MIAMI UNIVERSITY The Graduate School

Certificate for Approving the Dissertation

We hereby approve the dissertation of

Donald J. Domenici

Candidate for the Degree

Doctor of Philosophy

______Larry M. Leitner, Ph.D. Director

______Roger M. Knudson, Ph.D. Reader

______William B. Stiles, Ph.D. Reader

______Keith Tuma, Ph.D. Graduate School Representative

ABSTRACT

LISTENING TO THE VOICES OF CONSUMERS AND SURVIVORS: A QUALITATIVE STUDY OF EMPOWERMENT AND THE MENTAL HEALTH SYSTEM

By Donald J. Domenici

In recent years, there has been much discussion about the need for reforming the mental health system, including several government reports that address this topic. Although these government reports have mentioned the importance of involving consumers and their families in the process of reforming the mental health system, they are unclear about how we should go about doing so. Many authors have also identified stigma, discrimination, and empowerment as significant issues to address through mental health reform. The purpose of this study was to model a way that mental health professionals can engage in dialogue with people who utilize mental health services about how to improve the mental health system. I spoke to three women who have had varying experiences of mental health treatment. My goals were to generate dialogue across multiple perspectives and learn about participants‟ experiences in the mental health system, specifically with regard to stigma, discrimination, and empowerment/disempowerment. I also sought to foster empowerment and collaboration in my conversations with participants by encouraging them to share their views about mental health reform, attending carefully to their words, and inviting them to provide feedback about what I wrote. To analyze our conversations, I utilized a modified version of the Listening Guide, a qualitative research method that highlights relationality, aesthetics, and multiplicity in participants‟ voices. Through this study, I learned that there is a need for people who utilize mental health services to express their voices by telling their stories, inner dialogue plays a significant role in how people experience the mental health system, and mental health professionals need to be more aware of how their biases can influence treatment. I also learned about participants‟ experiences of stigma, discrimination, and empowerment.

LISTENING TO THE VOICES OF CONSUMERS AND SURVIVORS: A QUALITATIVE STUDY OF EMPOWERMENT AND THE MENTAL HEALTH SYSTEM

A DISSERTATION

Submitted to the faculty of Miami University in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Psychology by Donald J. Domenici Miami University Oxford, Ohio 2010

Dissertation Director: Larry M. Leitner, Ph.D.

TABLE OF CONTENTS Introduction…………………………………………………………………………….……….....1 The Need for Mental Health Reform….…………………..………………………....…....2 Consumer and Survivor Organizations….………………..……………………………....3 Stigma, Discrimination and Empowerment….…………..…………………………..…...4 Generating a Multilogue….…………………….…………………………………..…....11 My Positions/Biases….……………………………..…………………….………...…....13 Goals of the Present Study….……………..………………………………………..…....14 Method………………………………………………………………………………………...... 16 Participants………………………………………………………………………………16 Procedure …………………………………...………………………………………...... 16 Analysis………………….………………………………………………………….…....17 Results - Participant 1 (Sally)”………………….………..…………………………………...…21 First Reading: Main Narrative…………………………..………………………………21 Second Reading: The Voice of the Speaker………………...…………………………….28 Third Reading: Content Poems……………………………..……………………………30 Fourth and Subsequent Readings: Contrapuntal Voices…..………………………….…32 Synthesis……………………………………………………….…………………………35 Follow-up Contacts…………………..…………………….…………………………….38 Concluding Remarks……………………………………….……………………………..40 Results - Participant 2 (Elsie)………………………………………………..………………..…42 First Reading: Main Narrative……………………………...…...………………………42 Second Reading: The Voice of the Speaker……………………..……………………….49 Third Reading: Content Poems……………………………….....……….………………51 Fourth and Subsequent Readings: Contrapuntal Voices………..…………………….…53 Synthesis………………………………………………………….………………………56 Follow-up Contacts…………………..………………………….……………………….61 Concluding Remarks……………………………………………….……………………..62 Results - Participant 3 (Marcia)……………………………………………..………….……..…64 First Reading: Main Narrative…………………………….…………..…………………64 Second Reading: The Voice of the Speaker………………….……..……..………………70 Third Reading: Content Poems……………………………………………..…….………73 Fourth and Subsequent Readings: Contrapuntal Voices……………………..….……….75 Synthesis……………..……………………………………….…………………..………78 Follow-up Contacts………………….....…………………………………………………82 Concluding Remarks………………………………………………...…………………….82 Discussion………………………………………………………………………………...…….84 Summary……………..……………………………………………………………………84 Revisiting the Stigma, Discrimination, and Empowerment Literature…….……………...87 Implications for Mental Health Reform……………………………………..…………….90 The Use of Poetry in the Present Study………………………………………..…………..93 My Experience of Interacting With Participants…………………………………..………94 Limitations of the Present Study………………………………………………………..…97 References………….…………………………………………………………….…………..…99 Appendix A………………………………………………………………………...... 102 Appendix B……………………………………………………………………….………….....104

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Appendix C……………………………………………………………………….………...…..105 Appendix D……………………………………………………………………….………….....106 Appendix E…………………………………………………………………………………...... 185 Appendix F……………………………………………………………………………...... 193 Appendix G………………………………………………………………………...... 197 Appendix H……………………………………………………………………….………….....298 Appendix I……………….……………………………………………………….………...…..305 Appendix J……………….……………………………………………………….………….....308 Appendix K…………………………………………………………………………………...... 351 Appendix L……………...……………………………………………………………...... 357

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Listening to the Voices of Consumers and Survivors: A Qualitative Study of Empowerment and the Mental Health System

Chapter 1: Introduction

In recent years, many have pointed out the need for reforming the current mental health system (e.g., Everett, 2000; New Freedom Commission on Mental Health, 2003). According to Everett and various others, one important goal of mental health reform is to reduce stigma (negative stereotyping) and discrimination (social exclusion) against people who experience serious psychological distress. In addition, many authors have advocated for empowering people who receive mental health services (e.g., Linhorst & Eckert, 2003; Rose & Black, 1985). Empowerment here refers to people having the personal/political resources and opportunities to fully participate in society and decide what role the mental health system will play in their lives. One way to further a goal of empowerment is for mental health professionals to honor the voices of people who utilize mental health services by listening to what they have to say about their experiences in the mental health system (Chamberlain, 1995). Such movement toward empowerment could be a potentially useful and inclusive way to examine and improve the system. Ultimately, listening to patients, clients, consumers, and survivors could pave the way for more open dialogue, where the expertise of people living with serious psychological distress is valued as much as the expertise of the psychiatrists, psychologists, and other mental health professionals that work to help them. In the present study, I intended to model a way that mental health professionals can engage in dialogue with people who utilize mental health services about how to improve the mental health system. To be effective, such dialogue needs to involve multiple perspectives (i.e., a multi-logue), including the voices of people who have been impacted by the mental health system as “clients,” “consumers,” “patients,” “ex-patients,” and “survivors.” Therefore, in the present study, I sought out people who held differing perspectives regarding their experiences in the mental health system and looked at multiple positions within each participant‟s narrative. Through collaborative dialogue, I hoped to learn more about people‟s experiences of stigma, discrimination, and empowerment/disempowerment in the mental health system, and better understand how psychiatric labeling and mental health treatments help and/or hurt people. I also hoped to generate ideas about how professionals can improve the mental health system to meet better the needs of the people it serves. As I will describe, I made empowerment a central aspect of my study, not only as a topic of my conversations with participants, but also in the process of how our conversations were structured. Specifically, I wanted participants to feel more empowered through the process of our dialogue. By utilizing a qualitative approach that involves fostering a collaborative relationship with participants, attending carefully to their words (rather than attempting to quantify or categorize participants), and involving them at the level of co- researchers, I treated participants as empowered activists rather than passive subjects. Along the way, I engaged in self-reflection to examine how my own biases and opinions might be influencing the process of our conversations. To put the present study in context, I will describe the present state of mental health reform, focusing primarily on the consumer/survivor movements. In doing so, I will highlight the increasing importance of consumer/survivor involvement in shaping the direction of the mental health field. I also will provide an overview of some literature on stigma, discrimination, and empowerment, as they are key issues in this study. Finally, I will discuss previous studies that have focused on consumer/survivors‟ experiences of the mental health system. I will be

1 reviewing this literature to provide some background for the present study and contrast it with this previous research.

The Need for Mental Health Reform Over the past ten years, the United States government has published several reports that identify important issues and future directions for the field of mental health (New Freedom Commission on Mental Health, 2003; United States Public Health Service Office of the Surgeon General, 1999, 2001). These reports recommended several changes for the mental health system currently in place in the United States. For example, both the United States Public Health Service Office of the Surgeon General (1999; from here on referred to as “Office of the Surgeon General”) and the New Freedom Commission on Mental Health (2003; from here on referred to as “New Freedom Commission”) called for researchers and practitioners to provide services that are better tailored to consumers‟ individual needs, including those related to racial, ethnic and gender differences. Both reports also advocated addressing the problem of stigma as it relates to mental health, and allowing consumers to have better access to services and control over the type of services they receive. These publications are encouraging, as they indicate that the government has acknowledged problems of stigma and consumers‟ lack of control over their services. More important, however, is that government agencies have acknowledged the need for reforming the current mental health system. In fact, the New Freedom Commission (2003) went so far as to describe their agenda as nothing less than “transforming the mental health service delivery system” (p. 5) in the United States. As part of this process of reform, the New Freedom Commission recommended that the mental health system “involve consumers and families fully in orienting the mental health system toward recovery” (p. 37). Despite this recommendation, the New Freedom Commission was vague about how they attempted to involve consumers and families more fully. Although the New Freedom Commission partially based its report on comments from consumers about “the way mental health care is delivered in America” (p. 4), the report does not include any direct quotes from consumers or refer readers to transcripts where they might find these quotes. Further, the New Freedom Commission‟s report does not describe the context of these consumer comments. In other words, we do not know how the comments were attained (e.g., in person, by survey, etc.), nor do we know who collected the data (e.g., members of the New Freedom Commission, therapists, psychiatrists, etc.). Finally, the New Freedom Commission made no mention of talking to people that might refer to themselves as something other than “consumers.” For example, “psychiatric survivors” could have added a valuable alternative perspective on mental health reform. Therefore, future plans for mental health reform ought to include these and other perspectives in the dialogue. In light of the New Freedom Commission report, I believe it is important to involve consumers/survivors more fully in the process of “transforming” the mental health system. To do so, mental health professionals may need to bring consumers and survivors into the process of setting the kinds of goals that the New Freedom Commission has drafted. For mental health professionals to involve consumers and survivors in this process, we will need to collaborate with organizations run by psychiatric survivors, as well as those run by consumers. Collaborating in this manner will communicate that we are willing to listen to multiple perspectives regarding mental health reform.

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Consumer and Survivor Organizations In her review of the history of reform movements in the mental health field, Everett (1994) pointed out that previous reform movements share the common feature of having been primarily started and implemented by “privileged” members of society (i.e., mental health professionals), rather than by people who were being labeled as “mentally ill.” However, in the early 1970s, a social reform movement initiated by ex-patients began to evolve. This movement started with a number of groups that formed to allow ex-patients to discuss their problematic experiences in the mental health system. Ex-patient groups were concerned with issues such as involuntary hospitalization, marginalization, oppression, and the stigmatizing label of “mental illness” (Frese & Davis, 1997). These groups eventually developed into various consumer/survivor organizations with divergent philosophies and goals. Some maintained an anti-psychiatry stance, calling themselves “psychiatric survivors,” while others accepted the medical model of mental illness and sought to work together with the mainstream mental health system, calling themselves “consumers.” Everett (1994) described the consumer/survivor movement as the latest period of mental health reform, one that is unique in that the people who started and implemented it have received services through the mental health system. Now widespread, consumer and survivor organizations have continued to work toward mental health reform in the areas of public policy, self-help, recovery, advocacy, and support for families (Office of the Surgeon General, 1999). McLean (2000) described how consumers and survivors have worked toward providing self-help treatment alternatives, attaining representation with regard to policy-making, and participating in the development of mental health research proposals. By taking a more active role in promoting recovery and reforming the mental health system, mainstream consumer organizations, and, to a lesser extent, more progressive survivor organizations have successfully influenced the way people construe mental health issues, specifically, the relationship between the mental health system and the people it seeks to help. When ex-patient groups began forming in the early 1970s, most were critical of the field of psychiatry and the medical model that it espoused. Eventually, many moved away from the anti-psychiatry views of ex-patients, instead accepting the medical model of mental illness, and forming their own “consumer” organizations (McLean, 2000). Everett (2000) noted that the term, “consumer” grew out of attempts to emphasize the rights of patients as citizens. Generally, consumer organizations have worked with the mental health system to improve treatment options and provide better access to them (McLean, 2000). Consumer organizations have advocated for better access to resources (e.g., housing, employment) for consumers, and have fought to combat stigma and discrimination. The consumer movement also has offered support for families of people suffering from “mental illness” through organizations such as The National Alliance for the Mentally Ill (NAMI). On the other hand, psychiatric survivors view the field of psychiatry as a tool of social control that uses subtle methods of oppression under the guise of scientific authority (Everett, 2000). According to Everett, ex-patients created the term “survivor” to convey the strength and independence of people who have survived “the system.” The psychiatric survivor movement was begun by people who had been subjected to psychiatric treatment and viewed such treatment as harmful and problematic (Burstow, 2004). The psychiatric survivor movement has initiated activities such as publishing personal survivor stories, disseminating survivor art, lobbying for psychiatric survivors‟ rights, holding support groups, holding demonstrations, and providing alternative forms of care (Burstow, 2004).

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Judi Chamberlin (1978, 1995) was an active member of the psychiatric survivor movement who has written extensively about the movement and client-run alternatives to mainstream psychiatric treatment. Chamberlin (1995) explained that when she joined what was then called the “mental patients‟ liberation movement” in the early 1970s, ex-patients were looking to regain the power and control that they felt had been taken away by an oppressive mental health system. Chamberlin (1995) explained that the survivor movement has given ex- patients the chance to express their anger and pain without having these feelings invalidated as “delusional.” Survivor-run organizations provide self-help/support group services that stress the importance of shared experience and human contact as an alternative to psychiatric interventions that de-emphasize these elements. Chamberlin (1995) stated, “We are not afraid of each others‟ pain . . . whereas mental health professionals often want to drug our pain out of existence, or isolate us so that they will not have to deal with that pain” (p. 40). Chamberlin (1995) identified involuntary treatment as the key issue that concerns psychiatric survivors. She pointed out that the power differential between mental health professionals and consumers/patients goes unacknowledged, but serves to maintain the coercive nature of the mental health system. In short, “So long as forced treatment exists, patients will continue to be angry, psychiatrists will continue to diagnose our anger as a symptom, and we shall be stuck in the same tangle” (Chamberlin, 1995, p. 41-42). To address the issue of coercion, consumer/survivor organizations have sought political representation to influence public policy (Frese & Davis, 1997). According to Chamberlin (1995), for a true partnership to exist, mental health professionals and consumers/survivors need to have honest dialogue. This means that consumers/survivors need to be involved in policy development, professional meetings, and treatment planning, delivery and evaluation. Other authors have called for similar involvement of mental health consumers/psychiatric survivors in policy development and treatment planning (e.g., Burstow, 2004; Everett, 1994). In the present study, I strive to take seriously Chamberlin‟s (1995) recommendation for honest dialogue between consumers/survivors and mental health professionals. As mentioned earlier, I sought to foster this kind of dialogue across multiple perspectives, not just those of consumers or survivors. Although I did not interview mental health professionals in this study, I attempted to engage my own perspective as a mental health professional with the perspectives of several different people who have received mental health services. As part of the present dialogue, I asked participants about their experiences of stigma, discrimination, and empowerment in the mental health system. These issues are of particular importance because they often stand in the way of dialogue that is free of coercion. In the next section, I will discuss the issues of stigma, discrimination, and empowerment in more depth.

Stigma, Discrimination and Empowerment Stigma, discrimination, and empowerment each affect the extent that people can exercise their own sense of power. For example, stigmatizing beliefs are harmful to consumers/survivors in that they bring about social inequality and different forms of active discrimination, such as physical/verbal abuse and the denial of rights. Such a state of inequality perpetuates the existence of a society in which consumers/survivors are oppressed and disempowered. For consumers/survivors to be more fully involved in the planning and evaluation of mental health services, we need to understand the ways that the mental health system contributes to perpetuating a state of disempowerment. According to Chamberlain (1995), if mental health professionals could understand consumers‟/survivors‟ experiences of stigma, discrimination, and

4 disempowerment, they could better recognize how they might be treating their clients in ways that are disempowering or discriminatory. Chamberlin also suggested that mental health professionals do not want to believe that they are coercing clients into certain forms of treatment, but such coercion appears ingrained in the mental health system. If we can better understand how we contribute to issues such as stigma and discrimination, it can help us to foster empowerment in clients. In addition, we can begin to create a more balanced power dynamic to replace the unbalanced one that currently exists between mental health professionals and their clients/patients.

Stigma Corrigan and Penn (1999) defined stigma as a form of stereotyping that involves prejudiced or negative judgments. These authors drew on social psychology theory and research to examine the impact of stigma on people diagnosed with mental disorders, as well as efforts to reduce this kind of stigma. They described stigma as consisting of socialized knowledge structures that are unwarranted or over-generalized. For example, mainstream society often views people diagnosed with mental disorders as homicidal, childlike, or irresponsible. According to Corrigan and Kleinlein (2005), stigma also involves prejudice, described as the endorsement of negative stereotypes to the point that a person experiences a negative emotional reaction when confronted with members of the stereotyped group. The Office of the Surgeon General (1999) noted that stigma often prevents people from seeking treatment and reduces the willingness of the public to pay for treatment. Stigma also can lead to decreased self-esteem, and employment/housing discrimination for people diagnosed with a mental disorder (Corrigan & Penn, 1999). Others also have identified stigma as a roadblock to consumers‟ recovery and well- being (e.g., Campbell, 1989; Frese & Davis, 1997). Both the Office of the Surgeon General (1999) and the New Freedom Commission (2003) recommended education as a method of reducing stigma. Specifically, both reports recommended providing information to the public about specific disorders, effective treatments, and the fact that mental health is essential to physical health. This approach assumes that reducing negative attitudes, fears and prejudices toward people labeled as having mental disorders can be partly accomplished by discounting these negative stereotypes, and emphasizing that mental disorders are “real” conditions that respond to specific forms of treatment. Corrigan and Penn (1999) explained that mental health advocacy groups and government organizations frequently utilize protest and education strategies to try to reduce stigma. One problem with such an approach is that deeply entrenched stereotypes appear to function as automatic cognitions and are particularly resistant to change (Corrigan & Penn, 1999). Therefore, public protest and active forms of education (e.g., discussions, media portrayals, and simulations) appear to reduce stigma somewhat, but direct contact with people diagnosed with mental disorders often augment the effects of these methods (Corrigan & Penn, 1999). Corrigan and Penn (1999) noted that such direct contact appears to work best in situations where people have equal status or are in a cooperative or relational context; contact that goes beyond token representation. In addition, contact with people who deviate dramatically from a particular stereotype appears to be less effective at reducing stigma than contact with people who do not deviate from the stereotype as much. One explanation of this finding is that people often view individuals who engage in behavior that is vastly discrepant from a particular stereotype as exceptions to the stereotype rather a typical of a particular group (Corrigan & Penn, 1999).

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Drawing on the stigma research described by Corrigan and Penn (1999), the New Freedom Commission (2003) recommended that consumers take part in educating the public about mental disorders. However, we cannot address the impact of stigma simply by educating people about the importance of mental health and facilitating contact with consumers. Sayce (2000) pointed out that, although public education about mental disorders may help demonstrate the need for increasing funding and improving mental health services, there is no indication that this strategy changes behaviors that perpetuate social exclusion of consumers/survivors. Another problem is that sometimes, people receiving mental health services feel stigmatized by mental health professionals. Although the mainstream literature on stigma does not address this issue, several authors who identify as psychiatric survivors have done so (e.g., Chamberlin, 1995; Leete, 1991). As mentioned earlier, Chamberlin (1995) talked about how mental health professionals often diagnose patients‟ anger toward the mental health system as “delusional.” Meanwhile, Leete (1991) discussed the stigma that exists when mental health professionals label patients as incapable of making important life decisions, including, at times, decisions about their own treatment. These claims seem to challenge the notion that direct contact with mental health clients/patients leads to reduced stigma, since mental health professionals undoubtedly have more contact with this group than the public, albeit in a context that does not involve equal status. The implication here is that reducing stigma in the general public needs to begin with examining and changing stigmatizing beliefs and practices in the mental health system.

Discrimination According to Corrigan and Kleinlein (2005), discrimination involves behavioral responses to prejudice. The issue of discrimination has great relevance for the kinds of problems that mental health consumers and survivors face on a daily basis. Sayce (2000) pointed out the problems of social inequality and exclusion among consumers/survivors, noting the impact of discriminatory behaviors against people who utilize mental health services. By addressing discrimination, Sayce highlighted the exclusionary actions of people rather than just their attitudes and beliefs. As mentioned in the previous section, strategies such as educating the public about mental health issues may change people‟s stigmatizing beliefs, but not actually change how they treat people receiving mental health services. Alternatively, attempts to directly combat discrimination may have more of an impact on people‟s behavior. Examples of strategies that target discrimination include lobbying for anti-discrimination laws and advocating for consumers/survivors to prevent mistreatment or exclusion (Sayce, 2000). Corrigan and Kleinlein (2005) provided an extensive review of the impact that public stigma and discrimination have on people who experience serious psychological distress. For example, lack of employment and housing opportunities are two major issues that consumers and survivors face. Over the past 20 years, several surveys have documented the lack of employment among people labeled with psychiatric diagnoses despite the fact that most want to work (Corrigan & Kleinlein, 2005). In a recent national survey, unemployment rates among people who identified as having a mental disorder were three to five times higher than they were for people that did not report having a disorder (Sturm, Gresenz, Pacula, & Wells, 1999). Corrigan and Kleinlein (2005) cited similar research performed by the Substance Abuse and Mental Health Services Administration (SAMHSA) in 1998 that estimated a 60% unemployment rate among people with mental or emotional problems. Corrigan and Kleinlein (2005) noted that

6 consumers/survivors also face similar problems regarding housing, as they often experience homelessness or inadequate housing. While one explanation for these difficulties is that some people who experience serious psychological problems do not have the social skills or coping skills to obtain employment and/or adequate housing, Corrigan and Kleinlein (2005) cited numerous studies that demonstrate how negative public attitudes lead to employment and housing discrimination. Discrimination also may influence how the criminal justice system treats people diagnosed with mental disorders. For example, Teplin (1984) examined nearly 1400 instances of police encounters with people labeled as “mentally ill” and found a significantly greater arrest rate than in police encounters with people that do not have such a label. Further, according to Travis (as cited in Corrigan & Kleinlein, 2005), prevalence rates of people diagnosed with serious mental disorders in prisons have risen by 154% over the past 20 years. Consumers and survivors also face potential discrimination with regard to health care. Druss and Rosenheck (1998) examined this issue based on data from the 1994 National Health Survey. Approximately 10% of the 77,000 adults surveyed either reported having a mental disorder or significant psychiatric symptoms. A comparison of this group with the rest of the people in the sample showed no differences in the percentage of people who reported having health insurance or a primary care physician (Druss & Rosenheck, 1998). However, people who reported having mental disorders were twice as likely to report that agencies had denied them insurance because of a pre-existing condition and twice as likely to report having stayed at a job because they feared losing their health insurance benefits (Druss & Rosenheck, 1998). In another study, Druss, Bradford, Rosenheck, Radford, and Krumholz (2000) found that, in a sample of 113,653 Medicare patients being treated for myocardial infarction, people identified as having a mental disorder were significantly less likely to have received a procedure known as percutaneous transluminal coronary angioplasty. Although the authors seem to imply discrimination based on psychiatric labeling in this study, Corrigan and Kleinlein (2005) discussed potential confounding variables that may have had an impact on these findings (e.g., socioeconomic status). Although there may be alternative explanations in the above noted studies, the prevalence of such research suggests the far-reaching consequences of discrimination for consumers and survivors. Consumers/survivors‟ experiences seem to be wrought with numerous examples of discrimination. Sayce (2000) discussed similar examples of consumers/survivors being denied basic rights and having their opinions discounted because of having a psychiatric label. In addition, Sayce explained that many consumers/survivors report incidents of verbal abuse and physical violence toward them. In a study performed by Read and Baker (in Sayce, 2000), almost half of the 778 consumers surveyed reported that they had been verbally or physically attacked. In addition, 60% of the consumers surveyed reported that family or friends had treated them unfairly, and 50% reported that medical professionals had treated them unfairly in the course of their general health care (Read & Baker, in Sayce, 2000). As with the literature on stigma, much of the discrimination literature does not address consumers‟ and survivors‟ experiences of discrimination by mental health professionals. For example, Esso Leete (1991), who has lived with a diagnosis of schizophrenia throughout most of her life, has written about her experiences of discrimination from both mental health professionals and people outside of the mental health system. Leete recounted the debilitating effects of being administered “treatments,” such as electro-convulsive therapy (ECT), without being consulted because she was viewed as being “too ill” to make decisions for herself. She also

7 described how organizations denied her certain rights (e.g., re-entry to college, employment, a driver‟s license) and both professionals and non-professionals ignored her opinions when she told them she had been diagnosed with schizophrenia. Leete‟s experiences illustrate the power that psychiatric diagnoses, and terms such as “brain disorder,” have to perpetuate stigma and discrimination, dramatically altering the lives of people who receive such labels. Consumer and survivor groups have attempted to address issues of exclusion and inequality by seeking representation in policy-making, offering alternatives to psychiatric services, and participating in research that evaluates current treatment options. Many consumer and survivor organizations also have made efforts to employ consumers and survivors, ensure that employers treat them equally on the job, and advocate for resources (e.g., housing). Mental health professionals can provide support in these areas by acknowledging and addressing the existence of discrimination and exclusion in the mental health system. Moving in this direction can further a partnership between consumers/survivors and mental health professionals that is not built upon oppression and coercion. The foundations for such a partnership are in empowering consumers and survivors to where their citizenship is fully accepted.

Empowerment and Voice To paraphrase Leete (1991), stigma and discrimination have led her to feel enslaved rather than empowered. Stigma and discrimination place consumers and survivors in a position of disempowerment, stifling their voices and denying them some of the same basic rights as others. Sayce (2000) argued that people suffering from mental health problems only have an illusion of citizenship – lacking the “rights, responsibilities and complete membership in a society with everyone else” (p. 56). Further, consumers and survivors lack a voice in society because others often automatically discount their perspectives as invalid (Sayce, 2000). In other words, consumers and survivors find themselves in a position where other people do not take them seriously. Instead, others often give more credence to the opinions of their family members and clinicians (Sayce, 2000). Because consumers and survivors so frequently find themselves in the position of being “second class citizens,” it is crucial to reform for professionals to promote client/patient/consumer empowerment as part of mental health reform. Clark and Krupa (2002) pointed out that “empowerment” is a complex and multifaceted term that has engendered definitions from numerous disciplines. For example, Linhorst and Eckert (2003) defined empowerment as the ability to act on one‟s own behalf, rather than being oppressed, dependent, and powerless. Similarly, Rose and Black (1985) asserted that empowerment transforms forces that may seem inevitable and omnipotent into socially and historically situated circumstances that people can change. Clark and Krupa (2002) noted that, although the elusiveness of the term “empowerment” can lead to confusion as to what we are using the term to communicate, its multiple meanings also speak to a potential for hope and change. Clark and Krupa explained, “The beauty of such a complex term is that it allows for the attribution of multiple meanings and perspectives and seemingly endless possibilities for potential outcomes.” (p. 347) Drawing from several definitions of empowerment, Clark and Krupa (2002) described common elements, such as increasing personal control, sharing of power, mobilizing resources, and creating equity through social change. These authors added that empowerment could occur at the level of the individual, the small group, and the community. Empowerment approaches to mental health originated with community psychology and its attention to advocacy and citizenship (Fitzsimmons & Fuller, 2002; Rappaport, 1981).

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Fitzsimmons and Fuller (2002) stated that an empowerment approach challenges paternalistic practices in mental health services and recognizes people‟s existing power and capabilities. For example, they noted that this type of approach allows people to make decisions regarding their treatment and participate in their communities. Similarly, Linhorst and Eckert (2003) stated that, for people receiving mental health services, empowerment could occur through active participation in decision-making regarding treatment options. These authors reviewed a number of conditions for empowerment that they have observed with long-term patients at a psychiatric hospital. Linhorst and Eckert (2003) distinguished between internal conditions of empowerment (e.g., being able to manage one‟s own symptoms; having decision-making skills) and external conditions of empowerment (e.g., access to resources such as housing, employment, information, and social support; incentives for client participation in decision-making processes). Whereas internal conditions reflect the potential resources of people receiving mental health services, external conditions involve the reciprocal responsibility of society, including the government and mental health professionals, to promote inclusion, equality, and empowerment. Linhorst and Eckhert highlighted these different conditions of empowerment to point out that we all share the responsibility to help empower people dealing with mental health issues. An approach to reform that focuses on external conditions of empowerment could challenge mental health professionals to consider the impact that social factors, such as power dynamics, rights, and resources, have on mental health (Clark & Krupa, 2002). According to Bassman (1997), external factors are important to consumers/survivors‟ growth, recovery, and well-being. Bassman (1997) described a survey of over 9,000 consumers/survivors, family members and service providers conducted by the New York State Office of Mental Health. Consumers and survivors surveyed reported that services designed to reduce symptoms were less important in their lives than self-esteem, housing, and meaningful work (Felton, Carpinello, Massaro, & Evans as cited in Bassman, 1997). Although internal and external factors likely influence each other (e.g., symptom reduction may increase a person‟s chances of finding housing), issues such as housing, employment, and choice regarding treatment options can nonetheless affect consumers‟ and survivors‟ sense of empowerment and process of recovery. Therefore, they deserve recognition by mental health professionals for the potential role they may play in consumers/survivors‟ lives. Other authors have explored the benefits of an empowerment approach to mental health. Nelson, Lord, and Ochocka (2001) held focus groups and individual interviews with 59 consumers, family members, and staff members from several mental health organizations in Ontario, Canada, followed by in-depth interviews with 6 consumers. In many of these interviews participants talked about specific conditions of empowerment (e.g., responsive, community- focused mental health organizations, supportive relationships with peers and professionals) that facilitated mental health recovery, as well as disempowering conditions (e.g., lack of control over treatment, stigma, lack of confidence) that impeded recovery (Nelson, et al., 2001). Specific mental health changes described by participants included increased self-esteem, independence, skill development, health and well-being, improved relationships, increased involvement in the community, and better housing, employment, and education opportunities. Based on this qualitative study, Nelson, et al. (2001) concluded that empowerment at multiple levels is important to recovery. Salzer (1997) described additional benefits of an empowerment approach to mental health, noting that consumer participation in organizational decision-making offers a way of promoting innovation in service delivery, increasing accountability, and potentially improving

9 quality of care. According to Bassman (1997), many consumers and survivors have stressed the importance of approaches that emphasize a person‟s choice and preferences (e.g., regarding treatment goals). Fitzsimmons and Fuller (2002) added that research has shown that powerlessness and lack of control over events lead people to be more susceptible to health problems. People who lack choice also report decreased hope and motivation, as well as the abdication of personal responsibility (Bassman, 1997). An aspect of the present study that I view as important is generating dialogue that is respectful of the multi-faceted voices of participants. One key aspect of empowerment is the concept of “voice” (Clark & Krupa, 2002; Fitzsimmons & Fuller, 2002). Having a sense of “voice” refers to people being able to express their knowledge (Clark & Krupa, 2002). For example, Crossley and Crossley (2001) examined how the collective voice of psychiatric patients changed over the course of several decades in the second half of the 20th century. These authors compared a published account of people‟s experiences as psychiatric patients from 1957 with a separate account from 1996. Crossley and Crossley pointed out that while the earlier account featured themes of imprisonment, the later account contained themes of being a survivor. They also described differences in patients‟ perceptions of their own credibility, as the people in the 1957 account talked about their “mental patient” label as undermining their credibility. In contrast, those in the 1996 account described such a label as something that conferred credibility by nature of their being part of an oppressed group (Crossley & Crossley, 2001). Along a similar vein, Bolzan, Smith, Mears, and Ansiewicz (2001) interviewed people in Australia about their participation in mental health support groups, finding that, through these groups, they were redefining themselves as “experts” rather than “consumers.” More specifically, the people interviewed by Bolzan, et al. talked about support groups as a way to both learn from and help others, thus putting them in a more proactive role in which they are both the providers and receivers of services. Accounts such as these demonstrate how some consumers and survivors have developed an increased sense of their own voice and power. As noted earlier, mental health professionals have begun to recognize the voices of consumers and survivors. This trend is partially due to the consumer/survivor movement. There even has been some discussion about allowing consumers and their family members to be involved in the DSM review process (Sadler & Fulford, 2004). Although mental health professionals have mixed views about this possibility, and no mention has been made of involving people who identify as survivors, this type of proposal can lead to future dialogue between professionals and consumers. However, I believe that, as mental health professionals, we first need to acknowledge the role of power in our relationships with consumers/survivors and work toward minimizing the inequality that separates consumers/survivors from other people. Addressing this power differential can help to prevent coercion, the token representation of consumers/survivors, and other misuses of professional power. It is especially important for us to pay attention to the issue of power, because, in offering mental health services, there appears to be a danger of re-enacting situations involving power abuse that may be contributing to the current psychological distress that consumers/survivors experience (Everett, 2000). Several studies have looked toward consumers and survivors as experts regarding their own experience. For example, Everett (2000) conducted a study of the psychiatric survivor movement in a way that honored the experience of her participants and their sense of power and voice. Everett interviewed members of the psychiatric survivor movement in Ontario to learn about their transition from ex-mental patients to political activists. Survivors spoke about the need for a change in the way mental health professionals currently utilize power in the mental

10 health system, noting the need for alternatives based on the empowerment of people who receive mental health services (Everett, 2000). Participants mentioned the importance of empathy and allowing consumers/survivors to decide what they need rather than forcing treatments upon them. A number of participants viewed mental health professionals as wanting to suppress emotions such as anger. Participants also talked about the implicit power contract that exists in the mental health system, and the abuses of power that go unacknowledged by mental health professionals. For example, participants discussed physical and chemical restraints, electroconvulsive therapy, and coercion. Others talked about lack of resources being a problem, as well as the physical and sexual abuse that sometimes occurred within psychiatric institutions. Each of these themes echoes the sentiments of Chamberlin (1995) and provides some of the rationale for the psychiatric survivor movement and consumer/survivor-run treatment alternatives. The Well-Being Project (Campbell, 1989) is another study that was empowering of consumer/survivors. Campbell explained that the Well-Being Project sought to explore factors that promote or deter the well-being of people diagnosed with psychiatric disorders. The project was developed and administered by people with psychiatric diagnoses, and utilized both a quantitative survey and qualitative interviews. Researchers and participants had the opportunity to speak about their experiences and share their findings with other consumers, family members, and professionals (Campbell, 1989). Participants discussed a number of factors that promoted a sense of well-being for them, such as the importance of supportive relationships, alternatives to hospitalization, creativity, choice, and society‟s tolerance of non-mainstream behaviors. They also discussed factors that hindered their sense of well-being, including isolation, loneliness, internalized stigma, and negative stereotypes maintained in the media. As in Everett‟s (2000) study, participants also brought up the problem of involuntary treatment. Fifty-five percent of consumers who had been involuntarily hospitalized in the past reported that they had later avoided mental health services due to fear of being involuntarily hospitalized again (Campbell, 1989).

Generating a Multilogue In the present study, I sought to foster empowerment among participants by encouraging them to express their voices. By encouraging participants to tell their stories and express their views about mental health reform, I hoped to communicate that their voices were an essential part of the conversation that needs to occur if the mental health system is to be improved. It was not my goal to examine the specifics of service delivery or the effectiveness of particular treatments. (Sayce, 2000, made a similar distinction in her work.) Rather, I was more interested in learning about participants‟ experiences of stigma, discrimination, and empowerment/disempowerment in the mental health system. The present study is unique in that I looked at issues of power and voice in a way that highlighted the multiple perspectives of mental health consumers, survivors, clients, and patients regarding their experiences with the system. By inviting several different perspectives into dialogue, I attempted to take an approach that involved divergent thinking, or looking for many possibilities/answers, rather than convergent thinking, or looking for one answer (Rappaport, 1981). I attempted to generate a multi-logue that was respectful of each perspective, and honored the importance of communication that is free of coercion and the oppressive use of power. Part of my reasoning for taking an approach toward dialogue that honors multiplicity is that I believe this kind of collaboration across perspectives needs to occur in the mental health

11 system. In the present study, one of my most important goals was to provide a model for collaboration between mental health professionals and consumers, survivors, and others. Specifically, I sought to demonstrate how dialogue between consumers/survivors and mental health professionals can be more inclusive and attuned to the voice of consumers/survivors. Therefore, I believe that such a model must acknowledge the varying perspectives of the people whom the mental health system impacts. For example, only collaborating with consumers who support the dominant approach to mental health treatment is not enough to address adequately the issue of mental health reform. In addition to generating a multi-logue between different voices by talking to people who hold varying perspectives about the mental health system, I also sought to acknowledge and honor participants‟ internal dialogue. This focus on internal dialogue between contrasting voices is consistent with the idea of the dialogical self, as proposed by Hermans and Kempen (1993). Hermans (1996) described the “self” as being comprised of multiple autonomous “I” positions that each have a voice and engage in dialogue with each other. Hermans (2006) added that this model rejects the dualistic idea that the self exists internally and dialogue solely occurs externally. Elsewhere (Domenici, 2008), I discussed my views about how Hermans‟ ideas intersect with theories of archetypal psychology, hermeneutic constructivism, and personal construct theory. Specifically, I described how internal dialogue is a reflection of the human capacity to form meaningful relationships with the nonhuman world. For example, we can experience a strong connection to nature, Gods, fictional characters, inanimate objects, dream images, and fantasies. In addition, our relationships with these facets of the nonhuman world allow us to dialogue with them and imaginally experience them as autonomous others. I believe that these relationships are significant because they can validate and invalidate our ways of construing the world, for example, through prayer, engaging a dream image, or a conversation with one‟s “inner critic.” I view the theoretical perspective of hermeneutic constructivism as underlying my understanding of human meaning-making, internal dialogue, and relationships with both the human and non-human world. From this perspective, knowledge emerges though our interpretations of reality, which are based on our ever-changing relationship with an integral, interconnected, universe. In addition, we are part of this interconnected universe, and we simultaneously influence it while it influences us. Drawing on this theoretical model to inform the present study, I chose to examine ways that participants‟ language reflected contrasting “voices” or perspectives with regard to how they spoke about themselves and/or their experiences in the mental health system. I believe that, by doing so, I was able to acknowledge aspects of participants‟ narratives that deviated from their dominant ways of viewing themselves and their experiences, thus adding depth to the present inquiry. As I will describe in the next chapter, I utilized a qualitative approach to gather and analyze data because I was interested in how people described their experiences of the mental health system in their own words. I chose the Listening Guide (Gilligan, Spencer, Weinberg, & Bertsch, 2003) to analyze my conversations with participants in this study, because this method highlights internal multiplicity and the relationship between researcher and participants. My approach in this study was one of collaboration and dialogue, in which I entered a relationship with my participants (opposed to being an objective or neutral observer). Pinnegar and Daynes (2007) discussed how this move away from a position of objectivity in social science research is the most significant change involved in the turn toward narrative inquiry. Other authors have stressed the importance of acknowledging and exploring one‟s own subjectivity and biases as

12 part of good qualitative research (e.g., Marecek, Fine, & Kidder, 2001; Stiles, 1993). Therefore, before describing the specific method and qualitative analysis I used in this study, I will delineate my own position and biases.

My Position/Biases My position as a researcher in this study affords me privilege and power in multiple domains. I am a white male graduate student who, at the time of my initial conversations with participants, was part of the mental health system through my role as a psychologist-in-training. Currently, I continue to be part of the mental health system as a therapist at a college counseling center. In the present study, I hoped to create a dialogue that communicated a sense of respect and value toward people‟s experiences of the mental health system. In doing so, I found it important to recognize my own position of power and the potential influence it may have had on what people were willing to share with me. Since coercion can be such an oppressive tool when power is unevenly distributed, I tried to be particularly cognizant of how my position could have led participants to feel coerced to respond in a certain way. In the mental health system, open communication often does not occur because people feel coerced (at times in subtle ways) into accepting certain ideas (Chamberlain, 1995). In the present study, I invited people to participate, at the level of co-researchers, in an attempt to use my privileged position to encourage dialogue and foster a relationship of mutual collaboration rather than one of oppression and coercion. My intention was to co-construct multilayered narratives with people that aesthetically attended to the richness and uniqueness of their experiences, rather than attempting to categorize or quantify people or their experiences. I also attempted to involve participants in the process of reviewing and revising the way I presented their stories. I hoped that participants would be able to provide input about how I was portraying their stories, as opposed to me having full editorial power to “translate” or “analyze” participants‟ stories. Many of my views regarding the mental health field are consistent with those of the psychiatric survivor movement. For example, I believe that the medical model favored by modern psychiatry is oppressive in that it denies people their agency, rights, and responsibility. Such a model assumes that brain chemistry is the cause of psychological problems in a way that simplifies human experience and minimizes the role that people can play in their own recovery. As mental health professionals, we often try to eliminate behaviors that we do not understand rather than seeking to understand the ways that such behaviors are adaptive responses to a person‟s physical and/or psychological environment. I also believe that involuntary treatment is inhumane, and that people should have a choice in their treatment that is free from coercion and abuses of power. As a psychotherapist, I view the empowerment of people I work with as an essential goal of therapy. My approach to psychotherapy is rooted in narrative and constructivist theories that value understanding psychological problems in the context of a person‟s worldview and overarching life narrative. I have attempted to approach the present study in a manner that is consistent with my theoretical orientation toward psychotherapy. As mentioned above, I take an epistemological stance rooted in the philosophy of hermeneutics (specifically hermeneutic constructivism). With regard to research, the hermeneutic perspective rejects the notion that we can study the world objectively as detached observers (Packer & Addison, 1989). Rather, we are all embodied participants in the world, and, as such, we always are part of what we study. From this perspective, we negotiate knowledge through the active engagement of multiple perspectives (e.g., through dialogue with those who we are studying). Therefore, all knowledge exists within the context of our present interaction –

13 we cannot know the world outside of our present context within it. Research from the perspective of hermeneutics is an interpretative process that involves examining our biases (Packer & Addison, 1989). It is important to be aware of our biases as researchers, because they influence the interpretations we make. However, the research process influences us as well, changing the way we interact with the world in the future. Therefore, my intention in the present study was not to accurately represent objective truth as a neutral observer, but rather, to learn from my participants by participating actively in a dialogue with them.

Goals of the Present Study The purpose and goals of the present study are consistent with the epistemological stance described above. My overarching purpose was to model a way of engaging in a collaborative dialogue with people about their experiences in the mental health system. Building on this rationale, I sought to meet several goals through this study. First, I sought to generate dialogue across multiple perspectives by speaking to people who held differing views regarding their treatment in the mental health system (e.g., people identifying as mental health consumers, survivors, and/or as members of neither of these groups). I also examined inner dialogue by highlighting multiple perspectives within participants, using the metaphor of “contrapuntal voices.” (I will describe this metaphor in the analysis section below.) For the second goal of this study, I sought to learn about participants‟ experiences of stigma, discrimination, and empowerment in the mental health system. In other words, I wanted to find out what aspects of treatment participants found helpful and empowering, and what aspects they found unhelpful, stigmatizing, discriminatory, and/or disempowering. My third goal addressed the issue of mental health reform, as I specifically asked participants how they felt the system could be improved to meet their needs better. Whereas my goals up to this point have dealt with the content of my conversations with participants, the final two goals of this study relate to the process of empowerment in my conversations with participants. First, I sought to foster empowerment among participants with regard to how they view their interactions with the mental health system. Therefore, I utilized a qualitative approach that was consistent with this goal in that it involved fostering a collaborative relationship with participants, placing value upon their voices (as experts on their own experience), and inviting them into the interpretative process as co-researchers. My primary method of examining participants‟ experiences of empowerment (in their mental health treatment and in our conversations) was by attending to their comments throughout our conversations and in follow-up contacts. For example, one participant contacted me via email several days after we spoke, stating that our conversations had changed how she views the mental health treatment she receives, and that she felt more empowered to talk to her therapist about this change. My final goal was that I would engage in a continuous process of self-reflection with regard to how my own biases and opinions might influence how I interpret my interactions with participants. As part of my process of self-reflection, I attended carefully to the language of my participants. Whenever possible, I used direct quotes from participants (at times in the form of poetry) to describe their experiences. I also included my own reactions to each participant to make my process of self-reflection more transparent. I included this goal of self-reflection here because I believe it to be an important aspect of my collaboration with participants that is consistent with my qualitative approach to research. I hoped to tell a compelling story about my interactions with participants in this study in the course of working toward each of my goals. In addition, I wanted readers to better understand

14 participants‟ experiences in the mental health system, and in turn, become more aware of the importance of mental health reform and the challenges that it involves. I believe that reading about participants‟ experiences, as well as my process of self-reflection, can move readers to take personal and/or political action regarding mental health issues. For example, mental health professionals who read this study may be inclined to reflect on their own interactions with the people they work with and attempt to take a more collaborative approach to diagnosis, assessment, treatment planning, and/or policy-making.

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Chapter 2: Method

Participants For this study, I sought out participants who had received services in the mental health system and wished to talk about their experiences receiving services. Participants were recruited via a list serve for members of an international psychiatric survivor organization, as well as through local mental health professionals who passed on information about the study to clients they thought might be interested in participating. I initially had email and/or phone contact with eight potential participants (six women and two men), three of whom were, ultimately, unable to participate in the study. I eventually had conversations (either in person or over the phone) with five participants, all of whom identified as female and of predominantly Caucasian ethnicity. Participants varied with regard to social status, educational background, and geographical location (although all lived in the United States). I explained the purpose of the study to all participants and they signed informed consent forms (Appendix A). I transcribed and analyzed conversations for three of the five participants with whom I spoke, and did not include the other two participants in the results of this study. I could not include one participant because someone accidentally deleted the audio recording of our conversation, and I did not include the other participant because she did not meet the criteria of the study (she had never received mental health services, but instead spoke about her deceased son, who had). The three remaining participants had received mental health services (some voluntary and some involuntary) in multiple settings, including hospitals, community mental health centers, and private outpatient facilities. As was my goal, the experiences and perspectives of these participants differed enough to offer a sufficient amount of diversity in the voices represented in this study. Although all three participants discussed aspects of the mental health system that they found helpful, they each maintained a unique viewpoint regarding the value of mental health system as a whole. For example, although none of the participants explicitly identified as mental health consumers or survivors, they expressed views that were consistent with each of these groups.

Procedure I began each conversation with participants by asking the questions from an open-ended interview protocol that I created for this study (Appendix B). I created and utilized open-ended questions with the intention of generating discussion about each participant‟s background and experiences in the mental health system, including specific experiences of stigma, discrimination, and empowerment. Given my goal of generating an open discussion rather than a one-sided interview (i.e., one person asking questions and another person answering them), I will use the term “conversation” rather than “interview” from this point on. The focus of each conversation was on the experience of the participant, who I view as the expert regarding his or her own experience. I had between one and three conversations with each participant (having more conversations with participants who had more to say), with each conversation lasting 1-2 hours. Conversations were either conducted face-to-face or over the phone, recorded on a digital audio-recording device, and stored on a password-protected computer. To disguise the identities of participants, I created pseudonyms for each participant and removing any specific identifying information present in our conversations (e.g., names of people and places, distinctive demographic information).

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Analysis I analyzed conversations using the Listening Guide, a method of exploring a person‟s voice that focuses on relationality and multiplicity (Gilligan, Spencer, Weinberg, & Bertsch, 2003). The Listening Guide method grew out of analyses used by Gilligan (1982) in her work on gender and moral development. Since her initial work with this type of method, Gilligan and her colleagues have systematized the Listening Guide. A number of researchers have used this method to analyze various types of texts, as well as accounts of relationships, emotions, and other life experiences (Gilligan, et al., 2003). For example, Brown, Tappan, Gilligan, Miller, and Argyris (1989) discussed the use of the Listening Guide (which at that point they called “the Reading Guide”) in examining moral conflict. More specifically, they used this method to investigate two separate moral orientations in the narrative of an adolescent girl. Using the Listening/Reading Guide, the authors were able to attend to the voice of care and the voice of justice in the girl‟s narrative. Tolman (1994) described using the Listening Guide to understand adolescent girls‟ experiences of sexual desire. Tolman (1994) discussed how the Listening Guide was useful in highlighting the conflict between different voices, as participants talked about their experiences of joy and pleasure as well as those of fear, danger, and disempowerment. Similarly, Way (1998) wrote about using the Listening Guide to help sort out the nuances in themes and tensions between positions in the narratives of urban adolescents. The Listening Guide fits well with the goals of the present study in that it attends to ways the voice of the researcher can potentially dominate participants‟ voices, while promoting a relationship between the researcher and each participant. The researcher engages the multi- layered voice of each participant, and utilizes a multi-step approach to listen closely for various facets of a participant‟s voice. The researcher approaches each listening of a participant‟s story by attending to specific questions and to his or her own resonance to the stories that participants tell. In utilizing this method, the researcher does not try to be an objective or neutral observer, but instead notes and discusses aspects of his or her relationship to participants and their stories (Gilligan, et al., 2003). I utilized the steps outlined by Gilligan, et al. (2003) to guide my analysis, while adding some variation to the process as noted below. The first step described by Gilligan, et al. involves listening for the plot and noting the listener‟s responses to the plot. As part of this step, I attended to the social and cultural context of the story, as well as the setting (time and place), the people involved, themes, images, metaphors and omissions (Gilligan, et al., 2003). For example, while reading each conversation, I highlighted participants‟ main narratives regarding family, psychological struggles, interactions with mental health providers, treatment experiences, and significant relationships. I also noted my own feelings or thoughts about the narrative to refer back to as well. (Appendix C provides concrete illustrations of how data might be recorded using the Listening Guide method.) The second step of the analysis involves focusing on the voice of the speaker using “I poems” (Debold, as cited in Gilligan, et al., 2003). Gilligan, et al. (2003) described this step as a way of relationally connecting to a person‟s voice, and to how the person speaks about him or herself. This method attends to the “I” statements made by participants and how they are sequenced (i.e., what order they are spoken in). Such an approach can capture shifts in voice, meaning, or cadence in the form of a poem, while moving “the aspect of subjectivity to the foreground” (Gilligan, et al., 2003, p. 163). An “I poem” is created by noting each use of the first person “I” within a selected passage, along with the ensuing verb and any other important words that follow. Each line of the poem is comprised of an “I statement” in the order they appear in

17 the transcript. For example (as shown in Appendix C), the first three lines of an “I poem” might read, “I am worried; I leave here; I don‟t know.” This step highlights the speaker‟s subjective experience through a first person account in poetic form. In doing so, the researcher brings the voice of each participant to the forefront of the analysis in a way that aesthetically attends to the person‟s experience. In the present study, I generated a number of “I poems” for each participant. I based the generation of these “I poems” on the description provided by Gilligan, et al. (2003), although this method leaves room for differences in style and the subjectivity of the researcher. Therefore, some description of my process of creating these “I poems” seems to be warranted. To create the “I poems,” I first identified numerous series‟ of I-statements from each of the transcripts of my conversations with participants. I distinguished one series of I-statements from another based on differences in narrative elements (e.g., themes, plot, tone) covered in each part of the transcript. In addition, to avoid unnecessarily lengthy I poems, I limited each series of I-statements to no more than a few pages of text (usually less). For each I-statement, I included the verb that followed (if there was one), and then decided whether to also include some other words that followed. I made this decision based on whether these words seemed to fit with what appeared to be the main theme(s) of that particular part of the transcript. To keep the flow of the I-statements as consistent with the original transcript as possible, I chose to include every instance of the word “I” in a given sequence, even if a verb did not follow it, as in the utterance of an incomplete sentence. I included all of the “I poems” in the appendices, although in the results section, I chose to discuss three for each participant that I thought highlighted significant aspects of the person‟s dominant subjective voice. In doing so, I selected poems that reflected both general themes of participants‟ life narratives, as well as themes specifically related to their contact with the mental health system. For example, I included “I poems” from segments of the conversations where participants discussed their views of self, psychological difficulties, attitudes toward the mental health system, and aspects of the treatment they received. The third step to the Listening Guide is listening for contrapuntal voices expressed by the speaker. Gilligan et al. (2003) used a music metaphor to describe how multiple facets of a person‟s story have a relationship that is similar to melodies that play simultaneously in a musical counterpoint. The plot and “I” voice of the speaker (or main melody) set up a context from which to hear the other layers of the story (or counter-melodies), which provide depth to the analysis. This step typically involves multiple listenings for various contrapuntal voices. The rationale for this step comes from a view of the person that acknowledges internal multiplicity, or multiple voices that comprise a person‟s experience (e.g., Hermans & Kempen, 1993). For example, a person may express anger about his or her admission to a psychiatric hospital, while at the same time stating, “it was for my own good” (see Appendix C). Listening for contrapuntal voices allows the researcher to examine the multiple positions expressed in a given account. In this step of the process, I reviewed our conversations at least five times for each participant, attempting to glean contrapuntal voices each time. After doing so, I analyzed each contrapuntal voice that reflected a unique theme in a participant‟s narrative that appeared more than once. This process resulted in 2-3 contrapuntal voices for each participant, as I have detailed in the results section below. I did not specifically look for contrapuntal voices related to stigma, discrimination, empowerment, or mental health reform, although these themes were present in some of the contrapuntal voices I identified. In the final step to the Listening Guide, the researcher returns to the original research questions and synthesizes what s/he has learned from the multiple listenings to address these

18 questions. In the present study, I asked participants about their experiences of stigma, discrimination, empowerment and disempowerment within the mental health system. I also asked participants about how the system can better meet their needs. Drawing from these multiple listenings of each participant‟s story, I synthesized them into a coherent analysis. In addition, I attempted to contact each participant for feedback on what I had written. I included this step in my method as a way of making this study more collaborative by including participants as co-researchers (as mentioned earlier, collaboration is one of my goals for the study). I requested feedback from participants regarding their reactions and thoughts about what I had written, particularly anything that they felt was inaccurate or misrepresented their experiences or views. I explained to participants that I was willing to add to, remove, or change anything that I had written based on their feedback. In addition, I asked participants if anything had occurred in their lives since our initial conversations that would significantly alter the relevance or context of anything I had written (e.g., gaining knowledge that significantly changed the meaning of their past life events), since I made my follow-up contact attempts about 2-1/2 years after my initial conversations with participants. I was able to contact two of the three participants in this study, both of whom reviewed what I had written and provided feedback via email and/or phone (depending on the preference of each participant). I have incorporated participants‟ feedback into the results section below, while also discussing the specific details of my follow-up contacts with each participant. For the most part, I utilized the Listening Guide as Gilligan, et al. (2003) described it, although I expanded the use of poems in my analysis to enhance each participant‟s narrative on a more emotional level. To do so, in addition to “I poems,” I created content-oriented poems to highlight important aspects of participants‟ narratives that were not directly self-referential. As an example, I included a sample “depression poem” in Appendix C. I created these content poems by drawing on some of the main themes and/or contrapuntal voices I identified for each participant using the Listening Guide method. The actual content of such poems differed from person to person, depending on the content of her narrative and/or contrapuntal voices. Some examples of themes covered in these poems included medication, hospitalizations, expressing one‟s voice, and hallucinations. I created the content poems by using a slightly less formulaic approach than the Listening Guide method of creating “I poems.” After selecting a theme from a participant‟s narrative to weave into a “content poem,” I re-read the transcript of my conversation with the participant, identifying sections of text that dealt with this particular theme. I then pieced together statements made by the participant into freeform poems in a manner that I felt highlighted the theme. Although I kept the statements I included in the order they appeared in the transcript, I sometimes drew them from sections of text that spanned many pages, as there were some instances of themes coming up sporadically over a number of pages. As with the “I poems,” I have included all of these content poems in the appendices, but only chose to discuss three poems for each participant that I thought reflected the most significant aspects of the person‟s narrative. I decided to expand my use of poems in this study because I feel that poems are often more expressive of the aesthetic and emotional aspects of a person‟s voice and experience than other literary styles. Gilligan, et al. (2003) explained that the Listening Guide draws from both literary theory and the “language of music: voice, resonance, counterpoint, and fugue” (p. 158). Poetic language utilizes the musical elements of language (e.g., meter, timbre, cadence, even melody at times) in a way that can evoke strong emotions and deeply convey a person‟s lived experience (Furman, 2004). Goodall (2008) discussed the importance of framing a narrative in a

19 way that is evocative and attends to the language an author uses to represent a version of truth. In the present study, the Listening Guide serves to frame the story of my conversations with participants. By incorporating additional poems into this framing device, I have attempted to represent themes that came up in these conversations in a more evocative manner. In the words of Ely (2007): Poems streamline, encapsulate, and define, usually with brevity but always with the intent to plumb the heart of the matter; to bring the reader to live the emotions, the tone, the physicality, the voiced and not-voiced moments (p. 575). Goodall (2008) also discussed the power of a good story to change people‟s lives, which gets at the other reason I chose to expand the use of poems in the present study: to increase the potential of this project to move readers to personal and political action with regard to the struggles of people dealing with mental health issues. Gallardo, Furman and Kulkarni (2009) explained that poetry “encourages an empathic relationship” between author and audience (p. 291). I believe that it is important for readers to experience an empathic connection with the participants in this study, and to some extent, with me as well. Experiencing such a connection may help readers better understand some of the experiences of people who utilize mental health services, and become more motivated to change how they interact with these people. My use of poetry to this end is consistent with Richardson and St. Pierre‟s (2005) vision of a qualitative community that can “reach beyond academia and teach all of us about social injustice and methods for alleviating it” (p. 965). In the next three chapters, I have detailed the results of my analysis (I have devoted one chapter to each participant). Because the Listening Guide involves listening to (or reading through) the text multiple times (each time for different aspects of the material), I have discussed each listening/reading in a separate section, followed by a summary and synthesis for each participant, and a description of my follow-up contacts with participants. Whenever possible, I have included direct quotes from the transcripts of my conversations with participants. Please note that I have not changed any of the original words that participants utilized in our conversations, so as not to lose the individual voices of participants in my analysis. Therefore, all instances of slang, misspelling, and grammatically incorrect sentences are consistent with the original conversations. I have checked all quotes for accuracy, and used phonetically correct spellings to write out mispronounced or improperly spoken words.

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Chapter 3: Results - Participant 1 (Sally)

Sally was a divorced Caucasian woman in her early 40s who shared with me her experiences of inpatient and outpatient treatment in the mental health system. Sally described receiving various forms of voluntary and involuntary treatment, including psychotropic medication, group psychotherapy, individual psychotherapy, and couples therapy. She reported that she was diagnosed with paranoid schizophrenia, although some professionals also (or, in one case, instead) diagnosed her with bipolar disorder. Sally‟s views seemed consistent with the mental health survivor movement, although she did not identify explicitly as a “survivor” of the mental health system. At the time of our conversation, she was court-ordered to take psychiatric medication; she also saw a therapist, primarily to deal with the trauma of her first hospitalization (occurring about five years prior to our conversation). Sally had some initial questions about the confidentiality of the study, as she did not want her identity revealed. I explained to her that her real name and other unique identifying information would not be included in the final write-up of the study. Reviewing these confidentiality measures seemed to help her feel more comfortable with sharing information about herself. Sally and I had a single two and a half hour phone conversation that I recorded and transcribed for analysis (see Appendix D for the entire transcript of our conversation). All quotes in the present section are from the transcript, and the page numbers I referenced correspond to the pages of Appendix D (i.e., p. 1 refers to page one of Appendix D).

First Reading: Main Narrative Before describing the dominant plot of Sally‟s narrative, I will begin by introducing Sally as she presented herself to me. Because I came into this conversation hoping to learn about Sally‟s experiences in the mental health system, I had expected her to speak mainly about her identity as a survivor and/or consumer of the mental health system. However, although surviving the mental health system was an important part of Sally‟s story, she described her identity in other terms as well. Perhaps most dominantly, Sally presented herself as an advocate (both personally and professionally) for people to have the right to make their own decisions. She stated that she was an “educator” before her first hospitalization, working as a school psychologist. Sally described how her views about the mental health system stemmed from her experiences in childhood and work as a school psychologist, as well as her experiences in the system. In both her personal life and her career, she advocated for people receiving mental health treatment to have the right to personal choice. For example, she believed that they should have choice regarding their diagnoses, and the types of medical, psychiatric, and psychological treatment they undergo. Essentially, she viewed each of these issues as part of a person‟s lifestyle choices. Consistent with this goal, she described her approach to school psychology as one that was very child-centered and collaborative. Because of her awareness of and sensitivity to the harmful effects of stigmatization based on diagnostic labels, Sally ultimately believed that all treatment should be voluntary, and that the client should make the final decisions about his or her own treatment. Sally also brought up race, culture, gender, and family relationships in describing her identity. She said that she was the oldest of four children, explaining that she was an independent child and helped to raise two of her siblings until she left for college. Sally highlighted her tumultuous relationship with her mother, although she did not say much about her siblings and did not mention her father at all. Sally identified her ethnicity as “white,” but emphasized that

21 she grew up in several culturally diverse areas, and had always valued difference (e.g., noting, “I was the vice president of the international student association when I was on college campus,” p. 1). Sally seemed to have long been aware of the existence of stigma and discrimination with regard to race. She described being sensitive to this issue as far back as elementary school, explaining, “I was sensitive in elementary school where my friends who were just as intelligent, or more intelligent, than I was…they were not recommended for the honors and gifted programs like I was” (p. 53). She went on to say that her own experience of being labeled “seriously mentally ill” enabled her to better understand the experience of people who are discriminated against because of race. Sally also brought up the importance of gender roles in her life. She identified herself as heterosexual, but explained that she identified with a “tomboy” personality from a young age, preferring to dress in “boyish clothes,” despite her mother‟s protests. Similarly, the issue of dating became a point of contention between Sally and her mother: I had no interest in dating; all through high school I had no interest in dating, and she kept pushing me, and she kept wanting to visit- she pushed me to see if I wanted to see a psychiatrist to see if – I was lesbian, as if there was something wrong with me if I was (p. 6).

Plot/Themes Each of these experiences and aspects of Sally‟s identity played a role in the plot of her narrative. In short, Sally‟s narrative primarily involved her struggle to uphold her values in a society that was stigmatizing and a mental health system that invalidated her life choices. This theme of struggling to have her life choices accepted was first evident in her relationship with her mother, whose voice appeared at several points in Sally‟s narrative. Early in our conversation, Sally emphasized the fact that she was not very close with her family, and that she had a particularly problematic relationship with her mother. Sally explained that the pressure she received from her mother (e.g., in the past with regard to dating and dressing in more feminine clothes) became amplified when she was first hospitalized. At that time, Sally‟s mother began trying to convince her to take medication. Sally explained, “She wanted me to be on medication and that‟s all she would talk about on the phone…I couldn‟t deal with it anymore” (p. 5). Sally later added, “And so I had a lot of resentment towards my mom with that…I don‟t think she really understood – who I was, and she always wanted me to be somebody who I wasn‟t” (p. 8). This dynamic seemed to be omnipresent in their relationship, and eventually led Sally to end the relationship by cutting off contact with her mother. Further, Sally‟s experience of her mother pressuring her to act a certain way seemed to parallel her experiences of the mental health system. In a sense, Sally‟s struggle to be respected and make her own choices as a child and young adult were replayed through the invalidation she experienced by mental health professionals. These issues of choice and invalidation came to the forefront of Sally‟s narrative as she described her first hospitalization, probably the most significant event in her story (occurring when she was in her late 30s). Sally recounted the events leading up to her hospitalization in detail, focusing most closely on her physical and emotional state, as well as significant relationship issues in her life at the time. She began by pointing out that she was under a lot of stress from work at the time and was not sleeping much because of the long hours she was working. She also brought up the fact that there was a lot of uncertainty in several of her relationships. In particular, she was worried about a female friend who recently was in the hospital for depression and who was dating a man that caused Sally to feel uncomfortable.

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Perhaps more significantly, Sally had recently broken up with her boyfriend, whom she had difficulty trusting because she had recently learned that he had sexually assaulted someone when he was a teenager. Sally described becoming increasingly fearful and suspicious of certain people she did not know very well (such as her boyfriend). She also mentioned that she began to feel disturbed by comments others made toward her around that time. For example, she recalled a phone conversation she had with her boyfriend, stating, “He‟d called me and he told me that communication between the two of us would just drop. And… I just thought, „that‟s kind of an eerie thing to say‟” (p. 19). She also mentioned feeling scared because her friend made a cryptic comment that her roommate was talking about being the “Angel of Death” on the weekend that Sally was first hospitalized (p. 20). Sally‟s fearful emotional state culminated with her becoming particularly worried about the welfare of several people she knew, and, while on her way to visit one of them, she stopped off at a hospital she once volunteered at to use the phone to check on them. Sally described making several phone calls, but becoming slightly agitated after having some problems getting the phone to work: …and then I went to ask somebody about the phone, and I told them that the phones were cutting out. And… the person asked me „what do you mean that the phone‟s cutting out?‟… I didn‟t know how to really express myself, but I was – I just said you know, maybe they‟re – they‟re tapped because there was somebody answering from another department, and I thought I didn‟t have a privacy of the phone call to make the phone call that I needed to make (p. 23). Sally explained that this event led employees at the hospital to seize her and take her to a back room, saying only that they were going to do their “regular procedure” on her. Sally recalled that a nurse, a male security guard, and one other man took her, screaming, to a back room in the emergency department. She explained that once they entered the room, they closed the door, put a catheter in her and stuck something into her arm. At that point she began screaming that she knew her rights and demanded that they leave the door to the room they were in open (to which they complied). Sally described feeling terrified, fearing for her life and feeling extremely confused about why these people were violating her in such a way: …they said they were gonna do the regular procedure on me and I started screaming for my life. And… I had remembered that my passport had been stolen… a separate incident, so I wondered, „well, are they suspecting me as a drug criminal?‟ (p. 26). Sally also recounted feeling uncertain about how long they would keep her in the hospital or what she needed to do to get out, both of which hindered her ability to make informed choices. She explained, “I asked „how do I get out of the hospital?‟ and they kept trying to- they kept making it seem like it was going to be indefinite. I didn‟t know anything about the regs” (p. 28). In fact, one option presented to her was to go home with her mother, which Sally refused to do. She laughed as she recalled this decision, explaining, “I said no way was I going to go live with my mother. I said I preferred to stay in the hospital” (p. 10). In one of our follow-up contacts, Sally explained that a psychiatric nurse eventually told her she could leave the hospital if she promised to meet with a psychiatrist at a particular outside agency the following morning. Sally added that the psychiatric nurse informed her that, alternatively, her case would go before a judge. Thinking that she would have the opportunity to present her case in court, Sally agreed to this option. However, the judge did not allow Sally to testify on her own behalf. Rather, the judge reviewed her paperwork from the hospital and ruled that she was required to enter a psychiatric hospital for ongoing treatment.

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Sally was able to recount the progression of her emotional state as she became more and more frightened that evening. Clearly, being in the hospital against her will was an extremely invalidating event that occurred at a time in Sally‟s life when she was already feeling vulnerable and afraid. Rather than feeling like the hospital staff handled her agitation and fear with sensitivity and respect, Sally instead came away from this encounter feeling badly violated, and even more scared. Her hospitalization was particularly significant for her because she viewed it as having triggered her symptoms of schizophrenia. Sally explained, “I did not have schizophrenia before the first hospitalization. But, the first- after the first hospitalization I developed schizophrenia” (p. 48). From Sally‟s description of her symptoms, it appeared that what she experienced as worry and suspiciousness primarily brought on by stress and lack of sleep, became full-blown terror and paranoia following her first hospitalization (“I had a lot of conspiracy theories of who was involved,” p. 49). Sally‟s hospitalization was the first among many invalidating experiences in the mental health system. She described how her attempts to make sense of this hospitalization and subsequent instances of forced treatment (e.g., court-ordered medication) engendered a lot of distrust and “conspiracy theories.” Sally described this cycle of creating conspiracy theories about her forced treatment as a “self-fulfilling prophecy” (p. 49) that perpetuated further involuntary treatment being thrust upon her (i.e., she felt paranoid about being forced into treatment, and her paranoia was seen by mental health professionals as evidence of the need for continued involuntary treatment). However, Sally pointed out several times that she never was in the hospital because of being a danger to herself or others. Rather, each time she was hospitalized, it was because she had been deemed “persistently acutely disabled” (p. 77) by mental health professionals. (In several states, such a determination can justify a hospitalization, even when professionals do not deem that a person is a danger to self or others.) Sally expressed her frustration about her hospitalization even though she has never been a danger to herself or others, stating that she viewed this justification for involuntary hospitalization as a violation of the Americans with Disabilities Act. Following her description of the first hospitalization, the remainder of Sally‟s narrative mainly dealt with themes of stigma and lack of choice. Sally felt stigmatized through her treatment because of labels such as “seriously mentally ill” and “isolative.” In addition, she felt disempowered because the system took away her ability to make her own treatment choices. Sally identified stigma as one of the most difficult aspects of receiving inpatient psychiatric treatment. She explained, “the most negative thing about all the treatment was, is just the- the people that saw me there as an inpatient hospitalization” (p. 42). Sally pointed out that what made it particularly difficult for her was the fact that because she had worked in the field of social services, she saw several of her co-workers when she was in the hospital. She added that these encounters prevented her from returning to work, stating, “I thought, „they know I was here in the hospital.‟ I thought, „there‟s no way I‟m going back to the job.‟ So, psychologically I couldn‟t go back – I was too traumatized to go back” (p. 31). Sally also experienced certain labels as stigmatizing (e.g., “seriously mentally ill”). She described how it was especially difficult when she did not have control over whether she could disclose a particular label to others: They were forcing me to go to a… a building which dealt with only seriously mentally ill people… and that I thought was wrong. Where before I was allowed to go to one where there was either general mental health or seriously mental ill and you couldn‟t tell who… who was on which plan unless people volunteer the- say the information (p. 43).

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As mentioned earlier, an important theme throughout Sally‟s narrative was her struggle for the right to make her own choices. This theme was especially relevant when it comes to the use of psychotropic medication as a treatment option. Sally viewed the decision of whether to use medication as a life choice that everyone should have the right to make. In her work as a school psychologist, Sally was an advocate of educating people about both the positive and negative effects of medication, and was skeptical of drug company marketing. Professionally, Sally disagreed with her colleagues who favored medication to treat children diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), and, instead, she used behavioral techniques to work with these children. In her personal life, she chose to seek out alternatives to medication, for example, even when dealing with a knee injury as a teenager. She recounted her choice to forgo pain medication for this injury in favor of moderating the pain on her own: I was still experiencing headaches, and – and, I didn‟t like it, and I also realized that I couldn‟t feel the pain of my knee when I was on the medication. And… my knee wasn‟t getting any better, and I was out of season – and, so I wasn‟t able to compete. And, so I stopped taking the medication, and then I could feel the pain – the pain came back, but I could moderate the pain (p. 12). Sally maintained a skeptical view of psychiatric medications, attributing much of their reported benefits to the placebo effect. In addition, she explained that her family members and mental health professionals had a tendency to praise her when she was on medication and treat her more negatively when she was not. She suggested that these differing attitudes also could account for changes in symptoms that others often attributed solely to the medication. On several occasions since her first hospitalization, Sally engaged in outpatient individual and/or group therapy with counselors who did not require her to take psychotropic medication. However, she also was court-ordered to take medication at times (including currently): I never voluntarily consented to take the medication, so each time I was court-ordered to take the medication – because I refused to take the medication, so they decided I was irrational and didn‟t have the ability to consent to medication because I was refusing to take medication (p. 9). Sally explained that, for her, refusing medication was a matter of standing up for her belief that she should have the right not to take medication. In fact, she mentioned that other patients she met in the hospital advised her to agree to take the medication (so the doctors would release her sooner) and then stop taking it once she leaves. Unfortunately, refusing to comply with a form of treatment she does not agree with carried its own stigma for Sally. She stated, “It‟s such- such a stigma to be on court order for medication ‟cause you‟re take- taking away your… part of your competency. You‟re labeled as being incompetent in the area to make your medical choices” (p. 44). Sally highlighted the kind of Catch-22 that this decision represented – namely, being forced either to accept a treatment that she did not believe in or stand up for her values and invariably receive the stigmatizing label of being “incompetent.” Sally‟s own metaphor for this issue summed up her struggle quite appropriately: “Each time I‟ve gone with the court ordered treatment instead of willingly taking the voluntary medication, but that has been a huge stigma, and it’s been hard for me to swallow” (p. 44).

Characters In addition to those discussed so far (e.g., Sally‟s mother; her colleagues), Sally had several other characters in her story who are worth mentioning. First, Sally described several counselors with whom she worked over the few years prior to our conversation. She spoke of

25 these relationships as generally being helpful and supportive, even though therapy was challenging for her at times. Sally highlighted one particular instance of how her first counselor challenged her in a way she found helpful in the long term. Sally first entered therapy because of marital problems she was having with her husband at the time, as he was physically abusive toward her and had cheated on her with one of his family members. In therapy, Sally was able to talk about how painful it was to deal with her husband‟s incestuous infidelity, and her therapist suggested the possibility of getting a divorce. Sally explained that, since she had avoided considering this option up until that point, it was very hard to hear her therapist‟s suggestion, but ultimately she realized that getting a divorce was the right decision for her. Sally also talked about working with counselors on dealing with the trauma of her first hospitalization. She explained that therapy was helpful to her when it was voluntary and when she had the choice to select a counselor whose personality was a good fit for her. She added that several of her counselors were good at acknowledging and accepting her feelings, while also helping her to make more well-informed decisions, such as keeping herself safe in relationships. Sally also mentioned that her counselor recently had helped her to understand her symptoms better, by experimenting with alternate explanations of her paranoid thoughts: They say „well, schizophrenics don‟t listen to alternative explanations.‟ Well, they may not listen the first time, but if you try it again the second time and you be…understanding (of) their perspective or view, and say „Okay, well yes, it‟s possible that somebody could be out to follow you or whatever, like that – but maybe not… Can you just consider… maybe nobody‟s following you‟ (p. 64). Some common aspects of her therapy relationships that Sally found helpful were choice, validation of her emotions, and open communication. As I have mentioned, however, Sally also had encounters with professionals where these factors were not present, leaving her feeling unheard or disempowered. For example, she met several counselors who would not work with her unless she was on medication. Sally spoke about how off-putting this position could be, as she felt that counselors have made this decision based solely on the fact that she has a diagnosis of schizophrenia. She explained how the belief that all people with schizophrenia need medication got in the way of her establishing a relationship with some counselors (“It‟s been harder to start the counseling because of the- the biases these counselors have,” p. 37). In another situation, a counselor that Sally was seeing informed her by letter that she could no longer see her in therapy unless she started taking medication. Sally explained that she would have preferred to be able to discuss the issue in therapy: She didn‟t even tell me in a session in order for us to talk about it or discuss it or say why or anything like that. And I think I know why… I was redeveloping reoccurring schizophrenia. And… all of a sudden I got this letter… I think that that was just the wrong approach. I think she should have had some closure with me (p. 36) In this situation, Sally‟s main problem with her counselor was not necessarily their difference in opinion about medication, but, rather, a lack of communication about the subject. Although discussing the issue may not have prevented their work together from ending, it may have clarified the counselor‟s professional opinion for Sally, and as she mentioned, provided some closure in the relationship. One other character that bears mentioning was Sally‟s boyfriend, who was the same man she broke up with just before her first hospitalization. Around the time of that hospitalization, Sally was struggling with trusting others, making it difficult to work through issues with her boyfriend, who she did not know very well at the time. Sally mentioned that it was difficult

26 breaking up with him after learning details of his past that scared her. She was uncertain about how he would react to her ending the relationship, and, perhaps as a result, he became the subject of some of her paranoid “conspiracy theories” (e.g., the idea that he was trying to get her hospitalized). Sally explained that they were able to repair their relationship through open communication after he went through some counseling. She recounted one moment in particular that she believed both reaffirmed her trust in him, and served to alleviate some of her symptoms: What has helped me get out of the schizophrenia time is my boyfriend has come (to support her in court), and this is where he says he‟s really scared for me to get hospitalized again…the last, most recent time he testified about how horrible it was to see me on Prolixin and (other) medication, court-ordered. And I thought, „Oh, okay. He testified for me not being on medication so I guess he‟s not after to get me on medication after all‟… when it‟s come to the testimony or the hearing through the hospitalization, it‟s only been through that that I‟ve realized that he‟s been supportive with this (p. 65). This example showed how the stability and closeness of the relationships in Sally‟s life influenced the severity of her symptoms. Sally identified the presence of trust in her relationship with her boyfriend as an essential aspect of her psychological well-being. However, she pointed out that others were often quick to credit her improvement to the medication she is taking. Sally added, “It‟s unfortunately a bad coincidence so it makes it look like I‟m doing well after the medication, which isn‟t the case” (p. 65).

My Reactions Going into our conversation, I was very concerned with fostering an open dialogue by being up front about the purpose of my project, my theoretical orientation, and my views about the mental health system. However, I also wanted to make sure that expressing my views would not significantly influence what Sally felt comfortable talking about. Therefore, I tried to strike a balance up front between discussing my views about specific issues and affirming Sally‟s own experience. As our conversation progressed I realized that Sally and I shared some similar views about the mental health system, and this allowed me to feel more comfortable being open with her. Even if our views about the mental health system had differed significantly, I believe it would have been just as important to maintain an open dialogue with Sally. One example of how our dialogue played out occurred when Sally mentioned that her mother wanted her to take medication. I responded to this story by asking Sally whether her mother‟s stance was indicative of an ongoing pattern in their relationship. I also asked her whether there were similarities between the dynamics of this relationship and the dynamics of her relationship with the mental health system (e.g., regarding lack of choice, other people wanting her to be someone she did not want to be, etc.). I realized that, through my questions, I was disclosing my view that the mental health system sometimes rehashes relational dynamics that may lead to (or exacerbate) specific symptoms or problematic ways of relating with other people. As I reflected on this topic, I wondered about whether I was pushing my own conceptualization here, but, ultimately, I believed that my questions were relevant to Sally‟s experience, and, by asking them, I was able to act as an active participant in conversation with her (rather than a passive or detached interviewer). Another reaction I had while talking to Sally was that occasionally I had a hard time following her speech. Sally spoke very quickly and told a number of stories to demonstrate her points. Her style of communication made for numerous examples that illustrated the ideas she discussed, although it took me some time to adjust to her style. In the beginning of our

27 conversation, in particular, I felt like I was struggling to get a sense of the chronological order of her stories and a general sense of their timing and context. Once I was able to do so, I felt more comfortable interacting with Sally in a fluid manner. At one point, Sally mentioned that a past counselor once diagnosed her with bipolar disorder. When she said this, I immediately thought that this might have been a better descriptor of her symptoms than schizophrenia. I arrived at this view partly through my experience of her pressured speech, but more so from her descriptions of experiences that seemed like manic episodes (e.g., the period of overworking herself and sleeping little that preceded her first hospitalization). In addition, Sally said that her paranoid thoughts did not develop until her late 30s, which is not common with schizophrenia. Since diagnosis was not my intention in this study, I did not mention these reactions to Sally during our conversation. Upon further reflection, I reminded myself that the issue of diagnosis got away from Sally‟s experience and the main issues of this study, which I could not address by simply finding more “accurate” labels to describe a person‟s symptoms. The fact that I was thinking along these lines also served to remind me that, even as a therapist with a somewhat progressive theoretical orientation (i.e., I did not find DSM diagnoses particularly helpful in my work with clients), I was still ingrained in the discourse of modern psychiatry. Therefore, I recognized the need to remain aware of how this dominant paradigm influenced my ways of talking and thinking.

Second Reading: The Voice of the Speaker In this section, I have discussed three of the “I poems” I created using Sally‟s statements from our conversation. I selected the following three poems to discuss because I felt that they highlighted central aspects of Sally‟s subjective “I” voice. (See Appendix E for all of the “I poems” I created.) Whereas in the first section I focused on describing Sally‟s narrative as a whole, the next two sections will provide an opportunity to attend to specific experiences using her own language. The first poem that I will present here came from a section of the transcript where Sally was discussing her struggles with making decisions following her first hospitalization. I chose to discuss this poem because of the significant role this hospitalization played in her narrative. I never voluntarily consented to take the medication I was court-ordered I refused They decided I was irrational I was refusing

I should have never told my mom I got involuntarily hospitalized I got involuntarily hospitalized I called I told her I had no thoughts in my mind at all to tell my mom

I called my mom I wanted I said I preferred to stay

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I really appreciate the advice I should I should have never told my mom I had been hospitalized (p. 9-10) Sally‟s I-statements in this poem seemed to convey the tension between her sense of determination and uncertainty about her hospitalization. In the first stanza, her I-statements seemed to reflect the certainty she felt about her decision to refuse medication, despite the fact that others believed she was irrational for making this decision. In the second and third stanzas, her I-statements shifted toward her conversation with mother and regret about telling her she was in the hospital. I decided to end the second stanza with Sally‟s expression of uncertainty about what to tell her mother (“I had no thoughts in my mind at all to tell my mom”), in contrast to her more decisive statements in the third stanza, such as “I wanted,” “I said,” and “I preferred to stay.” Thus, this “I poem” reflects a significant shift in Sally‟s voice toward more decisive I- statements in her describing her hospitalization and subsequent conversation with her mother. The second poem I chose to describe came from Sally‟s description of how she stopped taking pain medication for a knee injury in high school. The passage that I generated this “I poem” from began and ended with declarative statements about Sally‟s views toward medication in general. Between these two statements was an explanation of her actions and experience of her knee injury: I had been a skeptic of medication I was in high school I was in athletics I didn‟t have athletic ability I had a knee injury I had, um I had, um I think it was

I was having such severe headaches I was still experiencing headaches I also realized I couldn‟t feel the pain I was on the medication I was out of season I wasn‟t able to compete I stopped taking the medication I could feel the pain I could moderate the pain

I decided I‟d much rather feel the pain I still have knee problems I just moderate my own pain (p. 12) After Sally‟s initial statement about being a “skeptic of medication,” she presented some background information about being involved in athletics, fumbling for details a bit. However,

29 once her I-statements began turning toward her direct experience of the situation in the second stanza (e.g., “I was still experiencing headaches,” “I couldn‟t feel the pain”), her voice seemed to gain confidence. After she described taking action (“I stopped taking the medication”), she explained her position regarding pain medication, stating, “I decided I‟d much rather feel the pain” and “I just moderate my own pain.” The impact of these statements extends beyond the situation Sally was describing, as it seemed to sum up her position regarding medication in general. The statements in this poem were similar to Sally‟s statement, “I never voluntarily consented to take the medication” from the first “I poem” (in their content, as well as their direct, declarative format). As in the first two “I poems,” the final poem in this section dealt with the theme of making a decision, in this case the decision to divorce her husband. However, the I-statements that made up this poem seemed to reflect more inner conflict and emotional turmoil than those in the first two poems: I saw I actually saw I saw I went I convinced my ex-husband I didn‟t really want to consider I realized I couldn‟t live with it I couldn‟t live with myself I didn‟t want to hear it I cried I biked I biked I biked I cried

I should get a divorce (p. 38) In this poem, Sally‟s conflict was evident in I-statements that seemed to reflect two opposing positions regarding her marriage. Her statements alternated between considering the need for a divorce (“I couldn‟t live with it,” “I couldn‟t live with myself”) and denying this possibility (“I didn‟t really want to consider,” I didn‟t want to hear it,”). I attempted to convey the emotion behind this overwhelming decision by using short, repetitive statements (“I cried,” “I biked”) that led up to Sally‟s final statement about coming to a decision. I put the final line (“I should get a divorce”) in a separate stanza to convey the sense of release and finality that I felt upon reading this statement, particularly following the tension of the preceding lines. I chose this poem because it seemed to touch on the process of change as Sally experienced it when she first engaged in counseling.

Third Reading: Content Poems As with the “I poems,” I have created a number of “content poems,” of which I will discuss three in this section. (All of the content poems I created are in Appendix F.) These content-oriented poems each highlight specific aspects of Sally‟s narrative to supplement my

30 discussion of her broad narrative. The following poems deal with the themes of medication, choice, and hospitalization, all of which were relevant to Sally‟s experiences in the mental health system. I generated the first poem from Sally‟s discussion of her views about medication early in our conversation: On medication

On the medication Not on medication A skeptic of medication

On the medication I stopped taking the medication Different types of medication

Take the medication You needed medication It wouldn‟t work without medication I was really skeptical of the medication I haven‟t needed medication (p. 11-14) Sally‟s skepticism of medication was apparent in her words here, as were the voices of those who wanted her to take medication and her colleagues who believed that behavioral treatments of ADHD would not work unless the child also took medication. The contrasts in her statements about medication (e.g., “on the medication/not on medication”) seemed to reflect how the issue of medication was a point of contention throughout Sally‟s life. Closely related to this conflict surrounding medication was the idea of choice, another important theme in Sally‟s narrative: I had the choice I‟ve had to make the choice To make your own medical choices

I did a lot of choice and I upset a lot of people

It‟s their choice I really, firmly believe in choice Again having choice And allowing choices

I think they should have a choice and they shouldn‟t be forced into it (p. 39-62) I decided to include this poem because (as mentioned previously) choice was probably the most consistent theme in Sally‟s narrative. The statements in this poem need little explanation, although it bears mentioning that the poem differed from the others in that the words in the poem spanned many pages of text. By pulling together a number of instances where Sally brought up “choice,” I created a poem that highlights the pervasiveness of the theme, rather

31 than its discussion in a specific context. In doing so, I attempted to cull Sally‟s comments about choice across multiple contexts into a succinct piece of poetry. The final content poem I have included here was from Sally‟s account of her initial hospitalization: I kept wondering how to get out of the hospital The only way to get out of the hospital I want to get out of the hospital The first hospital Then they transferred me to the second hospital The second hospital…

The second hospital, I was in there about 3 weeks Because I got hospitalized I had to take a leave of absence from my job When I was in the hospital The second hospital I saw numerous people from both those jobs that were in the hospital I thought, “They know I was here in the hospital.” (p. 29-31) I separated the two stanzas of this poem to correspond with Sally‟s experiences in two separate hospitals when she was first committed. The first stanza highlighted her desire and confusion regarding how to get out of the hospital, while the statements in the second stanza dealt with her concern about people she worked with seeing her in the hospital. Sally seemed to experience a sense of stigma about being in the hospital, as reflected in her statement, “They know I was here in the hospital.” As mentioned in previous sections, Sally described the stigma of her hospitalization as so traumatic that it prevented her from returning to work.

Fourth and Subsequent Readings: Contrapuntal Voices The Listening Guide method contains a useful way of gleaning the complex layers of a text through its use of multiple readings for voices that differ from the main plot. The “I poem” about divorce discussed earlier provides an example of how multiple positions can be represented even within a series of linear statements. In reading/listening for contrapuntal voices, I tried to focus on voices that spoke consistently across the narrative, rather than those that only came up briefly in the context of a specific story (e.g., the conflicting voices regarding whether to get a divorce). Three voices seemed to recur enough to create a sense of harmony (to use Gilligan‟s metaphor) or a backdrop to Sally‟s dominant I-position and plot.

Less Radical Voice I viewed Sally‟s dominant subjective voice as involving resilient advocacy for personal choice and a critical stance against the more stigmatizing and disempowering aspects of the mental health system. Although Sally characterized many of her experiences in the mental health system as unhelpful, there were times when she was slightly less critical of the system, and even utilized the language of psychiatric diagnosis to account for her some of her experiences. This position could reflect the voice of the dominant mental health paradigm, or perhaps just a less radically oriented voice. This voice first appeared early in our conversation when Sally was talking about her belief in personal choice with regard to medication. When I commented on how Sally seemed to emphasize choice a lot, she agreed. However, she also pointed out that she

32 believed “forced choice” could sometimes be a good thing, particularly with regard to parenting. She explained, “I do believe some forced choice is good, like one of the things my parents had me do is my parents required that I participate in athletic activities when I was in school growing up” (p. 15). Sally went on to describe how she had a difficult time with athletics (“it was very painful for me,” p. 15), but that in retrospect she believed the exercise was good for her. However, even in advocating for forcing children to be active, she left room for choice, noting, “I think there should be some forced choice, but I think there should be a choice of (activities)” (p. 15). In addition, it is important to note that Sally was firm in her stance that mental health professionals should never force clients/patients to take medication against their will. She was also clear about being against hospitalizing people against their will if they do not present a danger to other people. In this example, there appeared to be some dialogue between two positions (the more dominant advocate for choice and the less central advocate for a forced requirement). An internal dialogue between these two positions seemed to occur again when I asked Sally about how medication has benefited her. She initially credited the medication with helping her sleep better, stating, “The only benefit I‟ve had is when I‟ve been on the medication, I‟ve been able to sleep- sleep a little bit better sometimes” (p. 47). However, she immediately followed this statement by noting, “…but before I got hospitalized the first time…I never had a problem sleeping” (p. 47). Although Sally did mention that she was lacking sleep prior to her first hospitalization, she attributed her lack of sleep to working long hours (not to insomnia). As mentioned earlier, Sally attributed many of her symptoms (including sleep difficulties) to the trauma of this forced hospitalization (and subsequent involuntary treatment). Sally also talked about viewing the side effects of medications as outweighing any benefit they might have. In this example, Sally seemed to present a brief counterpoint to her criticism of medication by noting a possible benefit, but she immediately returned to her dominant position, by explaining that the trauma of forced treatment had overshadowed any benefit that such treatment might have. At other points, Sally‟s less radical voice was apparent in her use of the language of the mental health system. For example, Sally talked about “schizophrenics” and “having schizophrenia,” appearing to find this diagnostic label useful. Attempting to clarify her views about psychiatric diagnoses, I asked Sally whether she found them helpful in general. Her response seemed consistent with the less critical/radical voice: “I think sometimes they can be helpful…because somebody says „I‟ve been diagnosed bipolar,‟ you have an idea of what their diagnosis means…labels I think can be useful in having terminology to talk about stuff” (p. 55). Again however, she tempered this voice with a statement that fit more with her dominant narrative: “…but I think they often can be so damaging… because people have stereotypes” (p. 56). In a sense, this contrapuntal voice was most apparent when it was in dialogue with her dominant view of the mental health system.

Oppressed Voice Another voice that I came across in the text seemed to offer a contrast to the resilience that I saw as an important aspect of Sally‟s story. Just as each of us has moments when we feel overwhelmed or powerless in our lives, Sally‟s story also contained such moments. At times, Sally discussed these painful memories in a way that conveyed the profound invalidation she experienced at the time, speaking with the voice of one who is in the role of victim. This “victim” voice or “oppressed” voice seemed to appear as a response to Sally‟s power or choice being taken away, and was perhaps related to a need for a more empowering dominant narrative.

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One instance where this voice seemed to be especially noticeable was when Sally described her first hospitalization (“The first encounter with the mental health system was very scary and was very, very unfortunate,” p. 16). Throughout her description of this incident, Sally conveyed a sense of hopelessness and profound invalidation, using terms such as “terrified,” “scared,” and “traumatized.” Only traces of the resilience she presented in her dominant narrative seemed to remain, as she explained, “I started screaming for my life… I just was thinking whatever I could to try to save me, because I thought I was gonna get killed” (p. 26). This sense of helplessness continued even after she left the hospital, as the trauma of seeing co-workers in the hospital prevented her from returning to work. Sally stated, “I thought, „they know I was here in the hospital.‟ I thought, „there‟s no way I‟m going back to the job‟… psychologically I couldn‟t go back – I was too traumatized to go back to either job” (p. 31). Sally touched on her experiences of invalidation and disempowerment in other aspects of narrative as well, including when discussing her relationship with her mother and interactions with some mental health professionals. For example, she talked about mental health professionals pigeonholing her because of her diagnosis, noting, “that‟s what it‟s like being with- diagnosed with schizophrenia is you‟re labeled as… you‟re not being competent in the um, to make your own medical decisions. I was told I would have to take medication for the rest of my life” (p. 54). Sally seemed to experience psychiatric medication as a form of victimization and oppression, and she eventually decided to cut off contact with her mother because of their disagreements over medication. Sally described how being on certain medications left her feeling angry, impulsive, or hopeless. However, she did not have enough trust in the treatment providers she was working with at the time to tell them: I was not feeling like myself when I was on the hundred milligrams of Haldol, and I felt like – even doing something like uh, just stealing the police car or something like that which I never otherwise would do. But I kind of had the impulse, urge because I was just so angry… I didn‟t dare tell any of the people at the agency, because I thought they‟d just put more medication on me, or put another medication. And – also, when I was on Prolixin, I was suicidal the first time. I felt like- I felt like running myself in front of a train (p. 68).

Voice of Paranoia One other voice that I believe played a significant part in Sally‟s narrative relates to her experience of paranoia. Sally talked about experiencing fear and paranoia that led her to generate “conspiracy theories” about people who were out to harm her or others. She described this experience as part of her schizophrenia, and as such, I view it as the “voice of paranoia,” or perhaps even the “voice of schizophrenia.” Although this voice can be seen as closely related to the “victim” voice (e.g., both involve fear and invalidation), this voice seems more active, since creating “conspiracy theories” is one way of trying to make sense out of an invalidating experience such as being involuntarily hospitalized. The oppressed or victim voice differs from this one in that it seemed more helpless to take action. The voice of paranoia first became apparent to me when Sally recounted her first hospitalization. As mentioned earlier, her story of the events leading up to the hospitalization involved a description of how she became increasingly more fearful for herself and others. Perhaps because of ongoing interpersonal difficulties and/or lack of sleep, Sally found herself in a state of intense fear, and at that point the voice of paranoia appeared. Sally talked about becoming frightened because of reading into what people said. For example, she was very wary

34 about her boyfriend‟s comment that communication between the two of them “just drop” (p. 19) and her uncertainty about what he meant by this statement led to much fearful speculation for Sally. After her hospitalization, the voice of paranoia seemed to grow stronger, as she began looking for answers about how she ended up in the hospital: Because of that first hospitalization… the fact that I was never gonna get out and it seemed to be indefinite… and with all the incidents like the Angel of Death and cutting off the communication, everything like that, I had a lot of conspiracy theories of who was involved. And, trying to get me on medication and stuff like that (p. 48-49). Sally also described how her conspiracy theories affected her relationship with her boyfriend, stating, “He works in a field which does a lot of stuff with computers and electronics…so I have attributed to him that he‟s had all sorts of powers to be able to control me and manipulate me” (p. 49). These thoughts accompanied Sally‟s fear that her boyfriend wanted to have her hospitalized, and many of her “conspiracy theories” relate to her hospitalization. For example, she also expressed a fear that the government was perhaps responsible for her hospitalization and was trying to get her hospitalized again. Ironically, Sally‟s paranoid attempts to figure out who was responsible for her hospitalization actually end up getting her re- hospitalized. Hence, the voice of paranoia seemed to play an influential part in Sally‟s narrative, as her attempts to make meaning out of her experiences seemed to perpetuate further oppressive treatment.

Synthesis In this section, I synthesized the content from each of my previous readings in a way that specifically addressed the research questions of the project. I attempted to learn about Sally‟s experiences of empowerment, disempowerment, stigma, and discrimination in the mental health system by allowing her to tell her story and attending to both her broad life narrative and specific experiences. As described in the previous sections, Sally‟s dominant narrative dealt with her role as an advocate for empowerment and choice, and her struggle to maintain these values in her family, her career, and during her hospitalizations and outpatient treatment. Sally‟s subjective I- statements seemed to reflect the importance of choice in her life and mental health treatment. At other times, Sally‟s story conveyed an inner dialogue between multiple positions (e.g., helplessness and resilience). The following “I poem” highlighted one such instance with regard to Sally feeling suicidal when on a particularly high dose of Haldol: I was on medication I was not feeling like myself When I was on I felt like I kind of had the impulse I was just so angry

I was on I didn‟t dare tell I didn‟t dare tell I thought they‟d just put more I was on I was suicidal I felt like

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I felt like running myself in front of a train

I did not Because I was trying I had I said “Okay, I won‟t” (p. 67-68) To address the multiple facets of Sally‟s narrative, I also discussed several contrapuntal narrative voices that appear to be part of her story. For example, at times, she briefly entertained a less critical/radical stance on the mental health system, and, at other times, fear and “conspiracy theories” dominated her interactions within the mental health system and in her interpersonal relationships. At other times, as in the above poem, Sally experienced a level of oppression that led to a feeling of powerlessness (e.g., terror, suicidal thoughts, etc.).

Stigma and Discrimination Experiences of stigma and discrimination were present throughout Sally‟s multifaceted narrative, playing out in the relational dynamics between Sally and other characters in her story. Sally brought up the issue of stigma (or negative stereotyping) numerous times in describing her hospitalizations and interactions with both mental health professionals and others. For example, Sally felt stigmatized by labels such as “seriously mentally ill,” “isolative,” and “incompetent to make treatment decisions.” The stigma of these terms seemed partly related to her fear of how others (e.g., co-workers) would react to them, but also because she felt that they did not accurately reflect her experience. This lack of accurate reflection is perhaps most evident in Sally being court-ordered to take medication because she was deemed “incompetent” when she refused to take medication. Sally explained that it was “such a stigma to be on court order for medication ‟cause you‟re take- taking away your- part of your competency. You‟re labeled as being incompetent in the area to make your medical choices” (p. 44). It appeared that what, for Sally, was a philosophical disagreement about the decision to take medication to deal with her problems was labeled by mental health professionals and legal system as a matter of “incompetence.” Of course, a label such as “incompetent” can be extremely stigmatizing for someone who wishes to pursue treatment that does not involve medication. In addition to the stigma of mental health professionals labeling her incompetent to make her own choices, Sally experienced discrimination because of this label, in that professionals forced her to comply with certain forms of treatment. Sally experienced this type of treatment as discriminatory because she did not believe she did anything that warranted having her right to make her own medical choices taken away. She also pointed out the differential treatment that she received from others when she took her medication (e.g., people in her life praising her when she took medication, and expressing disapproval when she refused). Sally mentioned that such forced treatment is not only stigmatizing, but also can lead to people lying about whether they have taken their medication. For herself, she chose to refuse medication and be court-ordered rather than willingly accept a treatment that she did not want or agree with. As mentioned earlier, Sally described the process of being ordered to take medication against her will as “hard to swallow,” although she found some ways of trying to cope with it. She explained, “The medication I‟m taking…it‟s an injection, it‟s a once a month I get…and I choose to go that way because that way I don‟t have to orally succumb to their medication” (p. 37).

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Empowerment and Disempowerment Sally talked about empowerment in terms of choice. With regard to treatment in the mental health system, Sally felt empowered only as long as she was able to make her own decisions and have a say in her treatment. Sally described many experiences of disempowerment, from the trauma and violation of her initial hospitalization, to having her voice squelched at various points thereafter. For example, Sally described how people have viewed any complaints she had about her hospitalizations as evidence of how delusional she was. For Sally, forced treatment and interactions with professionals who did not foster open dialogue left her feeling disempowered in her life. Since Sally viewed the trauma of her initial hospitalization as the cause of her symptoms in the first place, it was not surprising that she had difficulty identifying aspects of the mental health system that led her to feel empowered (even when treatment has been voluntary). However, Sally did mention a few aspects of her therapy relationships that were helpful and felt somewhat empowering to her. She explained that it was helpful to have a therapist who was frank with her, acknowledged and accepted her feelings, and confronted or educated her once a solid relationship was established. For example, Sally mentioned that her therapist helped her keep herself safe, and helped her interpret and cope with her symptoms. Each of these factors played a significant role for Sally when she was dealing with her feelings about her husband‟s abuse, incest, and infidelity in therapy. Sally described her therapist as being accepting of her feelings about her husband, while also challenging and educating her (e.g., about relationship issues). Upon gaining some insight about the situation and about her own thoughts and feelings, Sally appeared to feel more empowered and confident enough to make a decision (i.e., the decision to get out of an abusive relationship). Much of what Sally had to say about empowerment related to her feeling connected to mental health professionals on an individual level. For example, she stated, “I think in making human connection and believing the person, and - accepting their own experiences for their own perceptions as how they are - that‟s empowering” (p. 62). As mentioned earlier, Sally talked about how positive relationships in her life were essential to her emotional well-being. The emphasis that she placed on the therapy relationship seemed consistent with this stance, as Sally viewed the quality of the relationships in her life as having more of an influence on her symptoms than her medication did. Further, Sally pointed out that having the option to choose a counselor/therapist who she felt worked well with her was empowering. In sum, for Sally, empowerment was fostered by open, meaningful relationships and having her feelings and choices respected. Alternatively, undergoing forced treatment and having her feelings invalidated undermined her sense of empowerment.

Mental Health Reform I addressed the issue of mental health reform with Sally by asking her how she thought the mental health system could better meet her needs and those of others. It was no surprise that Sally‟s first recommendation was that mental health professionals make more of an effort to establish a “human connection” with their clients/patients to better facilitate empowerment. Sally stressed the importance of mental health professionals being accepting of people‟s experiences and feelings. She added that professionals needed to believe in people and communicate that they can overcome obstacles in their lives, rather than telling them that they will never get better (or that they will only get better through medication). In the quote from the previous section, Sally mentioned the importance of professionals accepting people‟s experiences and perceptions “as how they are.” However, her description of being “accepting” did not necessarily imply

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“agreeing with.” For example, although Sally believed that her choices, opinions, and feelings should be respected, she also discussed how being offered alternative viewpoints was helpful to her at times. Significantly, these alternatives only seemed to be helpful to her when mental health professionals presented them as suggestions in the context of mutual dialogue (not as prescriptions, coercive recommendations, or forced treatments). This point also reiterates the need for choice among treatment options, as involuntary treatment removes a person‟s voice from the dialogue. In addition to these suggestions regarding choice and dialogue, Sally suggested several ways that the mental health system could potentially minimize the effect of stigma on people diagnosed with mental disorders. Sally‟s discussion of stigma focused, in particular, on the issue of confidentiality. This issue seemed to be significant for her, and, as mentioned earlier, she asked me about the confidentiality of this study before revealing certain pieces of information about her life (e.g., her career). Sally‟s first suggestion regarding confidentiality and stigma was for integrated settings – in other words, having various kinds of treatment in one building, rather than having a separate building (for instance) for people labeled “seriously mentally ill.” This suggestion arose from the stigma that Sally felt (as mentioned earlier) when she had to go into a building designated for “seriously mentally ill” people. Sally viewed having integrated treatment settings as a way of better protecting confidentiality, and thus allowing people to feel less stigmatized. Similarly, Sally also emphasized confidentiality with regard to disclosing one‟s diagnosis. For example, she recommended that people in groups not be required to disclose their diagnoses to other group members. Further, she suggested that groups for people with specific diagnoses (e.g., schizophrenia groups) have names that do not reveal group members‟ diagnoses to non-group members who might hear about the group. Sally also advocated for less stigmatizing or problem-focused group names in general (e.g., a neutral name such “women‟s group”). As I mentioned earlier, Sally explained that she did find some psychiatric labels useful, and she seemed to believe that the problem of stigma related to how people used these labels. For example, she mentioned that the label of “schizophrenia” often brought with it the stereotype of being unable to work (at least without medication). Sally also brought up the stigma that accompanied labels such as “isolative,” “court-ordered,” and “seriously mentally ill.” Again, she did not completely reject these labels, but, at least in her case, she found them to be problematic because she felt that the labels themselves and/or the stereotypes they carried with them were inaccurate. Therefore, one way that mental health professionals can improve the way these and other labels are used is by talking with our clients or patients about what they mean and soliciting feedback about whether they seem to fit with their experience. Although Sally did not make this suggestion directly, she did talk about advocating for this type of collaborative approach to diagnosis in her work as a school psychologist.

Follow-up Contacts Sally contacted me via email several times in the few weeks following our phone conversation. At one point, Sally offered to share information about my study with others who might have wanted to participate. She also sent several follow-up emails to clarify a few points she made in our phone conversation. For example, she mentioned some specific approaches to counseling that she found helpful, such as cognitive restructuring, EMDR, and interpersonal approaches to family and couples therapy. She also clarified that she felt stigmatized when others assumed that she was in the hospital because she was a danger to herself or others, since this was

38 the criteria for involuntary hospitalization in most states. In addition, Sally shared several articles with me that she thought might be relevant to my study. Specifically, she sent me an article about how trauma can cause schizophrenia, another on electroshock, and several articles that criticize the use of psychiatric medication. I contacted Sally almost three years after our initial conversation to provide feedback on what I had written about our conversation. I specifically asked Sally for any reactions she might have to what I wrote, whether she felt I was misrepresenting her experience in any way, and whether anything had changed in her life that would significantly alter the context of what we discussed previously (e.g., new information that contradicted anything she told me). Upon reviewing the transcript of our conversation and an earlier version of my analysis, Sally provided several significant pieces of feedback. First, she clarified a few personal details about her life (e.g., information about helping to raise her siblings, and how long she knew her boyfriend at the time of her first hospitalization). She also clarified that she had experienced both auditory and visual hallucinations in the past, and at the time of our initial contact, she may not have realized that these were hallucinations. In addition, she explained that she continued to believe that others are able to read her thoughts, and continued to take medication involuntarily because of her symptoms. She added that, at times, counselors helped her to gain some awareness of her symptoms, although medication had no effect on her symptoms. Sally also provided extensive feedback and suggestions regarding how I described her first hospitalization. My initial description of her hospitalization was somewhat brief, and I glossed over some of the details about the incident. Sally provided a more detailed description that led me to alter what I originally wrote. To illustrate the difference between our two descriptions of her hospitalization, I have included several of my initial sentences alongside Sally‟s suggested wording. My original wording was as follows: Sally explained that this event led employees at the hospital to admit her to the psychiatric ward, and, not surprisingly, this frightened her even more. Sally described that night as being very traumatic, adding that hospital staff forcibly brought her into another room, removed her clothing and gave her a catheter. In contrast, the following was Sally‟s suggested wording: Sally explained that this event led employees at the hospital to seize her and take her to a back room without explaining what they were going to do except to say that they were going to do their “regular procedure,” so she began screaming. The nurse, male security guard, and one other male proceeded to take her back to the back room in the emergency department where they stuck something in her arm and stuck a catheter up her body at which point she began screaming that they she knew her rights and that they needed to keep the door open at her demand. A male in the room then opened up the door. As I read Sally‟s suggested wording, I realized that she felt a more detailed discussion of her hospitalization was warranted to communicate her experience of the incident. Some of her wording changes also led me to become more aware of my own use of language. For example, I used the phrase, “admit her to the psychiatric ward,” whereas she preferred “seize her and take her to a back room.” In this example, Sally seemed to advocate for more descriptive language that was consistent with her experience, as “seize” has a very different connotation than “admit.” In addition to the fact that Sally was not actually “admitted” to the hospital that night (which I did not realize), I seemed to be utilizing more sanitized and/or “professional” language in this instance. In another example of this discrepancy, I noted that she was “given a catheter,” while Sally wrote that the hospital staff “stuck a catheter up her body” and clarified that “they stuck

39 something in her arm.” In the current version of my analysis, I drew heavily on Sally‟s language and the content she highlighted in an attempt to have this section better reflect her experience. One final piece of feedback that I received from Sally dealt with other aspects of the language of my analysis. Sally commented that she seemed to detect a bias in my write-up that suggested I supported the use of involuntary medication. She asked if this was my personal belief and whether I was aware of certain literature that challenged the usefulness of this approach. My initial reaction to his feedback was one of surprise, especially since I did not hold a pro- medication stance (nor did I support involuntary medication). However, as I worked in a mental health system that was largely supportive of the medical model (and often of involuntary treatment), I was aware that my language may reflect the biases I developed through being part of the system (even if I felt that some of the values of the system differed from my personal beliefs). I explained to Sally that I was not an advocate of involuntary treatment or the medical model, and asked if she could provide examples of how my language might suggest a pro- medication bias. Sally explained that she did not think I was clear in my writing about her belief that she is firmly against the use of forced medication and involuntary hospitalization when a person did not appear to be a danger to others. She also stated that I seemed to highlight her comments about medication helping her sleep, without pointing out that she believed the risks outweighed the benefits. In other words, Sally perceived parts of my write-up as implying more ambivalence on her part than she actually experienced. Upon reviewing my analysis, I realized that Sally‟s comments seemed to refer directly to my section about the contrapuntal voice that I labeled the “less radical voice.” Although it was not my intention to imply that this counterpoint to her main narrative negated her opposition to involuntary treatment, it appeared that my initial description of the “less radical voice” portrayed it as more influential in her life than she experienced it. In response to Sally‟s helpful comments, I incorporated her feedback into this section to revise my description of the role this voice plays in her narrative. It appeared that Sally believed I disagreed with her views about the mental health system because my description of the “less radical voice” was so different from much of her experience. Although I did not disagree with her views, her interpretation served to remind me that one‟s personal biases and opinions can never be fully removed from any research project.

Concluding Remarks I began this analysis by discussing aspects of Sally‟s identity, noting that she did not initially focus on her experiences in the mental health system when describing herself. Instead, she focused on her professional identity as a school psychologist and, more generally, as an advocate for choice among people receiving mental health services. Throughout our conversation, I began to understand how her life experiences and professional identity shaped much of how she perceived the mental health system and its role in her life. To reiterate this point, I included one final “I poem” that I felt touched on many of the experiences that Sally brought up in our discussion, including her hospitalization, her career, and her relationship with her mother. I found that the I-statements I used to generate this poem hinted at how these experiences and aspects of her identity were interconnected and mutually influenced each other. In a sense, this poem reminded me that to work collaboratively with people (in research, treatment, etc.), it is important to invite the whole person into the dialogue. I got diagnosed I got involuntarily hospitalized

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I got my two graduate degrees I was out in the working world I had always had a consistent work history I got I got involuntarily hospitalized I got involuntarily hospitalized

I just felt I wasn‟t suicidal I just I just couldn‟t handle it I‟d always I had always tried I wanted to have a good relationship with my mother I tried often (p. 8) Sally‟s experiences in the mental health system greatly affected her life by taking away her sense of agency and legal rights to make her own decisions regarding mental health treatment. She experienced her initial hospitalization as extremely traumatic and believed that it triggered many of her symptoms of paranoid schizophrenia. In addition, her subsequent hospitalizations and repeated involuntary treatment (namely medication) seemed to invalidate Sally‟s values and sense of agency even further. These experiences involved issues of choice and interpersonal invalidation that seemed to contribute to the symptoms that led to Sally‟s first hospitalization. At the time of our most recent contact, Sally was attempting to recover from her past trauma through counseling, and continuing to take medication against her will. Sally maintained her stance of advocacy and belief in choice despite the trauma and helplessness she experienced at times in her life. Her attempts at recovery involved finding aspects of the mental health system that she could draw upon for support (e.g., counseling), while maintaining her opposition to forced treatment. Overall, I thought that Sally provided a wealth of information about her experiences and views about the mental health system. I also found that being up front about my background and approach to research during our conversation helped me to develop rapport with Sally and make for a more open discussion. Throughout our conversation, there was some mutual dialogue, in that Sally sometimes asked questions of me and, at times, I offered my perspective on a particular topic. As a result, our discussion felt more like a conversation than an interview, consistent with my goal of establishing a collaborative dialogue. Of course, our conversation primarily dealt with her experiences, and she was more than willing to talk about them at length. However, I was far from an “impartial” observer reading questions from a script. Our conversation took on a life of its own at times, branching off in directions that departed from my prepared questions. These departures usually offered valuable background information and fleshed out Sally‟s narrative, and thus were welcome additions to our conversation. Finally, as described in the “follow-up contacts” section of this analysis, Sally offered feedback that clarified her narrative and helped me to reflect further on my own biases and the role they played in this study.

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Chapter 4: Results - Participant 2 (Elsie)

Elsie was a married Caucasian heterosexual woman in her late 40s who shared with me her experiences of both inpatient and outpatient treatment in the mental health system, most notably electro-convulsive therapy (ECT). Elsie did not identify as either a “consumer” or a “survivor” of the mental health system. Rather, she expressed views that were consistent with some aspects of each of these groups. I had three phone conversations with Elsie, the first of which involved discussing the purpose of the present study and the recent legal recourse that Elsie sought regarding the ECT she received (because of experiencing serious memory loss). Although I attempted to record all three of our phone conversations, an equipment malfunction prevented the first conversation from recording. Therefore, I based the following analysis on our second and third conversations (lasting around 3 hours and 15 minutes combined). The entire transcript of our two conversations is in Appendix G (page numbers of quotes refer to the pages of Appendix G).

First Reading: Main Narrative Elsie introduced herself to me in terms of her contact with the mental health system, specifically as a survivor of ECT suffering from significant long-term memory loss. In addition to ECT, Elsie talked about her hospitalizations, both voluntary and involuntary psychotropic medication, and individual psychotherapy. Elsie described receiving a diagnosis of bipolar disorder and explained that she was in individual therapy and taking medication at the time of our conversations. At times during our conversations, Elsie had difficulty recalling specific details about her past. However, she was able to provide a general description of major events in her life. For example, Elsie was vague about the details of her ECT (e.g., when she received it and how often), estimating that she received ECT on eighteen separate occasions before she was married (five years ago) and a number of other times after she was married. Throughout our conversations, Elsie used language that suggested she viewed herself as damaged or defective. Very early in our second conversation, she described herself as “somebody that‟s an incompetent… zombified, electric shocked mental health patient” (p. 1). Later she added, “I have definite… uh, bipolar disorder… I have alcohol issues and addiction issues, and now I have lost my memory. So now it‟s compiled. Now I‟ve got more problems to deal with” (p. 38). Elsie described a lack of meaning in her life, asking herself, “What purpose in life do I have?” and “What is my place?” (p. 18). Elsie also punctuated her narrative with more affirming self-views that are described later in this chapter. For example, despite suffering from numerous emotional and learning difficulties, Elsie graduated college and valued her education. Other major themes that came up in her narrative included feeling violated (e.g., by her parents being inconsistent and later by receiving ECT), escaping the past (e.g., through substance abuse and ECT), addiction/lack of moderation (both for herself and her family members), silence (regarding mental health issues), and the importance of support (mainly from her husband and her dogs).

Plot/Themes The plot of Elsie‟s narrative focused on the ECT she received and its impact on her life. However, Elsie also described her family, life history, and other experiences with the mental health system. Elsie had two older brothers and one younger sister, and maintained contact with each of her siblings. Her mother was deceased and she still had regular contact with her father,

42 who was in his 80s at the time of our conversations. Elsie discussed her family primarily in terms of “mental illness,” reporting a history of depression and possible schizophrenia in her father‟s family, and alcohol abuse in both her mother‟s and her fathers‟ families. Elsie was somewhat uncertain about the extent of these problems because her family rarely discussed them. She explained that there was a sense of shame in her family around topics such as sex and mental health issues, and therefore her family members did not discuss these subjects. For example, she explained that her father rarely discussed his own family of origin, and, with regard to mental health issues, “there‟s kind of a hush-hush that my dad doesn‟t want to talk about” (p. 6). In addition to making it difficult to learn about her family history, her family‟s attitudes toward mental health issues were incredibly invalidating for Elsie, as she received the message that her struggles were her own fault. To illustrate, she described a recent conversation with her father that became very heated: I said, „And you- and you think everything is just made up.‟ I said, „Is there something about mental illness that you don‟t want to accept?‟ And he said, „Yes, I don‟t accept it. Everybody has mental blocks. You‟re just blaming everything on your mental illness‟ (p. 41). According to Elsie, her father‟s statements were typical of her family members‟ attitudes about both her own difficulties specifically, and mental health issues in general. The theme of keeping issues quiet came up several times in our conversations, with the silence leaving Elsie feeling stifled and unsupported. Elsie reported that she remembers both of her parents drinking heavily when she was younger. Despite their heavy alcohol use, they both were able to hold jobs, although they struggled financially. She stated that her father continued to drink in moderation throughout his life, while her mother abused alcohol up until her death. Elsie added, “My mother definitely abused it… I still remember finding large containers of uh, vodka in her later years” (p. 7). Elsie elaborated on her mother‟s alcohol abuse, noting, “I have no doubt that she drank when she was pregnant with me as well as my little sister” (p. 8). Elsie explained that she and each of her siblings also abused substances (mainly alcohol) at times in their lives. She added that, aside from her oldest brother, who continued to drink “large amounts on the weekends” (p. 9), she and her siblings eventually turned to other forms of addiction (rather than substance use). For example, she described her own addiction to running (“if I wasn‟t running thirty or forty, fifty miles a week, I would have mood fluctuations” p. 22), as well as her sister‟s overeating and preoccupation with her health problems. She also described the following change in the younger of her two brothers: My brother… used to drink, smoke, and… marijuana and I‟m not sure what else. But he got into the running, because of all the running I was doing, quit smoking, and… he started getting into the cycling… he was riding in excessive amounts, um… 50 and 60 miles everyday after work (p. 9). The presence of addiction in Elsie‟s family seemed to provide an influential backdrop to her own difficulty finding moderation in her life. Indeed, the theme of addiction vs. moderation played out in her attempts to alter her mood through substance use, running, and ECT. In Elsie‟s words, “I don‟t seem to know what moderation is” (p. 83). Violation was a prominent theme in Elsie‟s narrative, both with regard to her receiving ECT as an adult, as well as certain aspects of her childhood. Elsie mentioned that her issues with mood instability and alcohol use partially related to a need to escape her past, namely her family and certain childhood memories. Specifically, she described the stress of growing up as a child

43 of alcoholic parents and witnessing their frequent arguing and financial problems. She also mentioned feeling angry with her parents because she was an unplanned pregnancy, something her father had revealed to her. In addition to feeling violated in her family environment, Elsie briefly talked about other children ridiculing her in school because of her learning disability. She also stated that a neighbor‟s brother attempted to abuse her sexually at the age of five or six, but she was able to get away and tell her parents. In this situation, she recalled experiencing her parents as compassionate and supportive of her. The attempted abuse seemed to fit with the theme of feeling violated, although Elsie stated that dealing with family strife was more traumatic for her than this incident. She identified several ways that she tried to “escape” her past, including avoiding or denying her emotions and seeking altered states of consciousness (e.g., through alcohol and running). Elsie explained that ECT became another method of escape, as it both provided a sense of euphoria and allowed her to forget much of her past. However, ECT ultimately became another form of violation, one that Elsie described as more harmful to her than anything she experienced during her childhood. She added that, although she did not want to remember parts of her past, through ECT she ended up losing both good and bad memories. As a result, Elsie wondered how she could work through issues that she believed contributed to her symptoms when she could not remember her past. At the time of our conversations, part of her recovery process involved seeking legal recourse and policy changes regarding ECT. Elsie had contact with the mental health system numerous times in her life, beginning when she was competing professionally as a runner after graduating high school. She explained that she saw a sports psychologist around that time because of experiencing mood instability and obsessive thoughts. Elsie also stated that she had trouble with reading and overall school performance throughout her childhood. In college, she underwent psychological testing, resulting in a diagnosis of dyslexia, and allowing her to receive disability accommodations in her courses (e.g., receiving her textbooks on tape; taking exams orally). She described a number of issues over the course of 10-15 years that led to her receiving ECT. Prior to her ECT, Elsie experienced depressive and manic episodes, as well as symptoms of anxiety. She explained that she often used alcohol to self-medicate her depression and anxiety, noting that alcohol had a temporary “euphoric effect” (p. 15), but ultimately led to her feeling even more depressed. Elsie mentioned that she spent time in the hospital on several occasions and doctors pumped her stomach at least twice because of suicide attempts involving mixing alcohol with sleeping pills. She also recalled being in a 30-day alcohol treatment program in the late 1990s and attending Alcoholics Anonymous at times in the past. She was not specific about how much she was drinking at the time of our conversations, but described her use as excessive. Elsie explained that, since receiving ECT, she was unable to remember some of her past treatment experiences (e.g., she remembered very little about her alcohol treatment). The memories she had of her treatment experiences were, for the most part, negative. In particular, she described being in the hospital as unhelpful because she did not feel she could relate to the other patients and saw the staff very infrequently. She stated that being in the hospital provided her with temporary housing and access to medication, but little else. Further, she did not feel that going to the hospital was an effective way of preventing her from attempting suicide because she knew what to tell the doctor to get released (i.e., that she was not thinking of killing herself). She placed slightly more value on some of the counseling she received that focused on coping skills, cognitive strategies, and distraction techniques (“the counseling was supportive,” p. 34). Elsie took various psychiatric medications throughout her adult life and noted that they had very little

44 impact on her long-term symptoms. Elsie also mentioned that side effects of her medications bothered her significantly. For example, she noted that at one point she was prescribed ADHD medication (a stimulant), but quickly stopped taking it because it induced symptoms of mania and anxiety. In addition, Elsie explained that, as a runner, she was preoccupied with staying thin and therefore refused to take any medication that had weight gain as a side effect. Elsie‟s refusal to take certain medications was one factor that led her psychiatrist to suggest ECT as an option. In her own words, “they eventually just convinced me that ECT would take care of all my problems and I would be back to normal” (p. 34). Elsie explained that her doctor initially prescribed twelve ECT sessions, but ultimately ended up administering ECT to her numerous other times. She felt angry about the way her doctor administered her ECT for several reasons. First, she did not feel that her doctor fully informed her about the potential side effects of the treatment, specifically memory loss. Elsie stated that her doctor seemed to downplay the possibility of memory loss, and the initial consent for treatment form she signed did not contain a clear explanation of this side effect of ECT. She also felt ignored by professionals (her psychiatrist, her psychologist) when she initially reported experiencing memory loss, although she eventually began asking for more ECT because she enjoyed the feeling of euphoria and the attention from doctors that it brought her. Elsie added that, in hindsight, she attributed part of her euphoria to the morphine her doctor administered following each treatment. She stated that, although ECT initially helped her to feel less depressed, the memory loss she experienced perpetuated her long-term symptoms of depression. Elsie also mentioned that, due to the sense of euphoria it brought on, ECT became another addiction for her (much like alcohol and running had been in the past). She explained that she was encouraged to continue receiving ECT because of the results she was seeing, but, in hindsight, she wished that her psychiatrist had discontinued the treatment after 15 or 20 treatments. She stated that, eventually, her psychologist tried to get her to discontinue ECT. However, at that point, she resisted the recommendation because of how good she felt after each treatment. While Elsie acknowledged that it was her decision to continue receiving ECT, she still feels that she would have made a different decision if she was fully aware of the long-term side effects and/or if treatment providers took her concerns about memory loss seriously. Elsie‟s experiences with ECT fit with the theme of violation that was present in other parts of her narrative. She described feeling “abused” and “violated” by ECT, stating, “Somebody stripped me of part of my life” (p. 18). Elsie described having “no real history” (p. 18), as she was unable to remember significant events in her life, such as her wedding day. The loss of these important memories left her with little sense of purpose in life, and struggling to find reasons to live. Elsie described feeling that she was “starting over” (p. 19) in many areas of her life (e.g., her marriage, career), noting that “everything‟s like new” (p. 26). The process of starting over was frustrating for her at times, as she felt “stupid” and ashamed when she could not remember something important, such as her husband‟s birthday (p. 37). She also mentioned that her problems with memory negatively affected her attention span and judgment. In addition, she talked about experiencing “horrifying” nightmares that seemed to reflect the violation and trauma of her ECT. For example, she recounted, “I‟m being chased and put inside a place, and being confined,” as well as, “the other doctor that gave the ECT was chasing me down with a bunch of dogs” (p. 57).

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Characters Elsie described several significant people in her life that played major roles in her narrative. Her husband was the most prominent of these people, as he was Elsie‟s main support throughout the five years they had been married and the only significant human support in her life at the time of our conversations. Elsie had known her husband for seven years, making him one of the few people who could attest to the changes in Elsie‟s memory since she began receiving ECT. As such, Elsie‟s husband was more than her life partner, but also a person who could verify her concerns to other people. For example, he accompanied her to a meeting with her lawyer, and she noted, “I think having him there... kind of helped verify the situation” (p. 1). In addition, Elsie‟s husband helped her to recall events that she could not remember, and seemed to be one of her only positive connections to her life before ECT. Elsie did not talk about whether her husband played any role in her decisions to try ECT or continue to use it despite her memory loss. Elsie described having several other sources of support over the course of her life. She explained that her dogs were the most important sources of support she had at the time of our conversations. At one point during our email contact prior to our conversations, Elsie mentioned that her dogs had been more therapeutic than any form of treatment she received. In our final conversation, she briefly touched on her belief that animals can be an important source of support for people with disabilities. Elsie also mentioned that when she was competing as an athlete (both running and swimming), her coaches and peers were very important to her, and she pointed out the influence of coaches in her life since around age six. She explained the important role of her coaches during childhood: With the learning disabilities, um… and then I think the stressors of home life… finding something where an adult figure would tell me, „Do this,‟ and I would do what they said and then I would come home with a ribbon or a trophy. So there was a certain – you give this person respect… you do what they instruct you to do, and you come home with ribbons, trophies… and my family- my mom and dad, even with the- some of the alcohol problems, still attended all my swim meets… and encouraged me to, um… compete, and were extremely proud of what I was doing (p. 24). In a sense, her coaches helped provide her with a sense of structure and accomplishment. They also provided Elsie a way to receive positive regard from her parents. She did not discuss any other instances of receiving such regard or support from her parents, although she mentioned that her maternal grandparents were perhaps her most supportive family members when she was a child. Specifically, she explained that her grandfather instilled in her a value of education that she continued to view as a significant part of her life, while her maternal grandmother provided stability and financial assistance to Elsie‟s family. Elsie‟s description of her grandmother seemed to reflect a sense of stability and consistency, although she also described her role in the larger family pattern of silence. She explained, “My grandmother, because she didn‟t use alcohol, was pretty supportive, but then, at the same hand, she was very much in denial about the family problems” (p. 25). Elsie frequently spoke about mental health professionals in her narrative, but rarely in the context of support. Rather, she described feeling unsupported by her psychiatrist and psychologist regarding her attempts to demonstrate that ECT had a negative impact on her life. Elsie was particularly frustrated with her psychiatrist, who was not willing to support her claim that her memory loss was due to ECT, even though he told her that he personally did not support ECT as a treatment option. Not surprisingly, Elsie described having an unfavorable view of the

46 doctor who administered ECT, as her memories of her interactions with him seemed to elicit emotions of anger, fear and sadness (in addition to the nightmares mentioned earlier). In terms of her struggles with ECT, Elsie felt unsupported by her family members, such as her brother, who implied that she was responsible for her memory loss since she signed the consent form for ECT in the first place. Elsie also stated that people often discounted her memory problems (much like her other difficulties) as something she made up (“people are telling me it‟s all in my head,” p. 40). The idea that Elsie‟s problems were “all in her head” seemed consistent with her family‟s tendency to avoid problems (specifically those related to mental health issues). Elsie‟s father seemed to be the family member who embodied this pattern of avoiding problems most strongly. Elsie described having a significant amount of conflict with her father throughout her life, mentioning several issues that created tension between the two of them because of how her father handled them. For example, Elsie mentioned that he stirred up conflict between her and her sister by speaking negatively of Elsie when he was around her sister (and vice versa). Perhaps most significant was that Elsie felt invalidated by her father‟s adherence to the idea that mental health issues should be avoided or kept “hush-hush.” As mentioned earlier, Elsie noted that her father accused her of “just blaming everything on (her) mental illness” (p. 41), a statement that she found invalidating of her emotional struggles. At other times, her father resisted her attempts to discuss her family‟s history of alcohol abuse and other problems (“I don‟t want to talk about it,” p. 41). Interestingly, Elsie‟s mother was conspicuously absent from her narrative. Elsie only mentioned that her mother was an alcoholic who drank while she was pregnant with Elsie and her sister. It is unclear what her relationship with her mother was like. However, Elsie did discuss how difficult it was growing up as the child of alcoholic parents, suggesting a level of emotion that may have be too painful for her to talk about in our conversations.

My Reactions I had several reactions as I spoke with Elsie and as I later reviewed our conversations. Most notably, Elsie‟s discussion of losing her sense of purpose in life was saddening to hear about, especially because, as a mental health professional, one of my highest values is helping people find an increased sense of meaning and purpose in their lives. Instead of feeling empowered and finding meaning in her life, Elsie felt the need to ask herself, “What purpose in life do I have? What is the reason for me to be here?” and “What is my place?” (p. 18). Rather than being able to work through past trauma, Elsie felt stripped of some of the most treasured aspects of her life history: And then you realize that you have no real history that you can recall details of. You have no real recollection of your athletics or your- your education, or um… even your honeymoon or your marriage. I don‟t remember my wedding vows with my husband. Um… I don‟t remember conversations or trips that we‟ve taken (p. 18). As I listened to Elsie recount the impact of her treatment, I recalled the phrase, “Do no harm.” Elsie‟s description of feeling violated, abused, and not fully informed about the risks of ECT suggested that this tenet was not upheld in Elsie‟s ECT treatment. As mentioned previously, the theme of violation seemed to be at the forefront of her narrative. She likened her experience to that of people who have been sexually abused, stating, “It must be awful to be violated and that‟s- that‟s how I feel. I‟ve been- I‟ve been violated. Somebody stripped me of part of my life”

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(p.18). Elsie acknowledged that not all of the memories she lost were positive, but made it clear that the trade-off did not feel like it was worth it for her. I also felt slightly uncomfortable as Elsie described her suicidal ideation and her tendency to avoid disclosing it to her psychologist and other mental health professionals. Elsie talked about her past involuntary hospitalizations due to active suicidal ideation. For the most part, she experienced these hospitalizations as disempowering and unhelpful. As a result, she had difficulty being honest with her psychologist about how she was feeling for fear that she would send Elsie to the hospital again. She explained that when she was in the hospital, she ended up “lying and telling the doctors what they want to hear” (p. 52). Although I was able to empathize with Elsie‟s sense of disempowerment, as a therapist I also could identify with her psychologist‟s ethical responsibility regarding duty to protect. At times, I felt somewhat conflicted about my role, as I was not in a position where I could intervene if I felt Elsie was in any kind of immediate danger. I decided to disclose my struggle to Elsie and we briefly discussed the impact that Elsie‟s concerns might have been having on her relationship with her psychologist. Elsie stated, “She's frustrated because I have not been telling her the truth” (p. 54), but noted that they had not discussed the issue directly. She then reiterated the reason for her hesitance, explaining, “If I‟m too up front with her then she‟s- professionally has to take certain measures” (p. 54). Elsie elaborated on her interactions with her therapist: She asked me today, I mean, her first question is, „Well how are you doing today?‟ And before I could even think, I just said, „Fine.‟ Actually, when I‟m extremely angry and distraught, and I‟ve been flying for the last six weeks (p. 56). Ultimately, I encouraged Elsie to be honest with her psychologist about how their relationship had changed since her last hospitalization. I also pointed out to Elsie that disclosing intense emotions or even suicidal ideation was necessary in therapy and that, typically, doing so was not reason enough to hospitalize someone. In addition to encouraging Elsie to be honest with her psychologist, I attempted to model such honesty through my self-disclosure about what I was feeling. Interestingly, this was one of the only times I made specific recommendations to a participant, but I felt that doing so was warranted to maintain openness in our dialogue. At times, I experienced Elsie as tangential and difficult to follow, a pattern that seemed consistent with her description of having attention problems. Elsie seemed to have a lot that she wanted to talk about, and this added depth to her story but made it difficult for us to stay focused at times. As mentioned earlier, we spent our first conversation (the one that did not record) discussing Elsie‟s recent legal case, and therefore did not get to any of the questions I had for her. Elsie‟s legal case was both interesting and significant, as it was one of the main ways she was attempting to re-empower herself by breaking the silence surrounding mental health issues. During our conversations, I felt inspired hearing Elsie speak of wanting to talk about her problems and work through the trauma of feeling violated. In the process of telling her story, she talked about wanting to help other people who might receive ECT by ensuring that doctors fully inform people of the potential consequences of the procedure. Therefore, Elsie‟s court case was as much about self-empowerment and preventing violation of others as it was about receiving compensation for past harm. Finally, I found myself interested in Elsie‟s struggles regarding language, particularly in her interactions with people who identified as either mental health survivors or mental health consumers. Elsie identified neither as a consumer nor as a survivor, but noted that at times survivors have criticized her for using the language of psychiatric diagnoses and “mental illness.” I could relate to some of Elsie‟s ambivalence about what terms to use and whether to

48 use the same terms with all people. At times, Elsie seemed to have difficulty communicating in general (e.g., finding the “right” words to say). However, her specific difficulties with the language of mental health issues seemed to reflect her lack of affiliation either with consumers or survivors. Her struggle with talking about mental health issues also seemed to speak to the need for increased dialogue and understanding between these different groups. In addition, her uncertainty about language seemed related to the themes of silence and invalidation that permeated Elsie‟s dominant narrative.

Second Reading: The Voice of the Speaker I generated a number of “I poems” from the text of my conversations with Elsie (see Appendix H), and chose three here that seemed to highlight different aspects of Elsie‟s dominant subjective “I” voice. The first poem I included here came from a section of our second conversation where Elsie was talking about her memory loss. I chose to discuss this “I poem” because I felt that it reflected the violation and loss that permeated Elsie‟s sense of self. I feel I‟ve been I‟ve been violated I‟m not I want I supposed I can‟t I have very little recollection of my past I told my husband I said I really I need I feel like I‟m starting over (p. 18-19) The I-statements that comprise this “I poem” highlight Elsie‟s subjective view of herself as someone who has been violated and cannot remember her past, as well as her attempts to express her struggles to others, namely her husband (“I told my husband… I said”). Several prominent themes from her main narrative came up through her I-statements (e.g., memory loss, violation), and the immediacy of the “I poem” format seems to bring the impact of these issues to the forefront. In particular, three of the extended lines that I chose for the poem seemed to capture her most salient feelings about how ECT affected her life (“I‟ve been violated,” “I have very little recollection of my past,” and perhaps most significantly, “I feel like I‟m starting over”). I generated the next poem from a segment of our conversation that involved Elsie describing her history of treatment in the mental health system. I was extremely highly medicated I would take just certain ones I wouldn‟t take „em I was willing to take I saw a counselor I started saying I was kind of

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I started asking for it I enjoyed the feelings that I had after the ECT

I have no problem saying that I mean I I was getting attention I would have been I am I wouldn‟t have submitted I really wish I needed I could I can‟t (p. 34-35) The first stanza of this poem begins with Elsie‟s description of herself as being “extremely highly medicated” in the past, qualified by statements about only being willing to take certain medications. In her I-statements, she also mentioned seeing a counselor and, after some time, reaching a point where she began asking for ECT because of how she felt after receiving it. The second stanza continues with Elsie owning the fact that she liked how she felt when she received ECT and the attention it brought her (“I have no problem saying that”). Several conditional I-statements follow (“I would have been,” “I wouldn‟t have submitted”), suggesting a sense of regret about decisions Elsie would have made differently if she could go back. I decided to end the poem with the statement, “I can‟t,” because I felt that it represented a shift from reflecting on possible pasts (i.e., “would,” “could” and “wish”) to acknowledging the limitations of the present. Overall, the I-statements included in this poem seemed to express Elsie‟s past and current feelings about her treatment experiences. The final “I poem” in this section highlights the role of alcohol and other substances in Elsie‟s life, particularly during her more self-destructive moments. Most of the I-statements in the following poem deal with her relationship to substance use and addiction. Am I using Am I wanting to drink I enjoy the wine I have to be extremely careful I don‟t even remember I went to treatment I went somewhere I remember I went to Alcoholics Anonymous I had a real difficult time I was depressed I would get I would get into a suicidal state I would save pills I wouldn‟t tell anybody I was realizing I was doing the wrong thing

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I‟d be in the emergency room I I‟ve had my stomach pumped I can remember I mean I even went to Mexico I figured I‟m going to kill myself I‟m just going to drink (p. 15-16) Elsie‟s I-statements in this poem seemed to reflect her relationship with alcohol, a substance she continues to use in moderation. I began the poem with Elsie‟s questions about using and statements about needing caution and moderation. I decided to include her use the word, “am,” prior to “I” in the first two lines, to preserve the context of these I-statements, which were actually I-questions. Next, Elsie shifted to speaking in past tense as she described her past attempts to kill herself with pills when she was abusing substances such as alcohol. Elsie seemed to respond to her questions at the beginning of the poem (e.g., “Am I wanting to drink?”) with statements such as “I enjoy the wine” and “I have to be extremely careful.” However, Elsie‟s use of alcohol for enjoyment contrasted greatly with how she used it in the past, as evidenced through the statements, “I‟m going to kill myself… I‟m just going to drink.” Based on Elsie‟s I- statements in this poem, it appears that she shifted from abusing alcohol to using it in moderation. However, she continued to recognize the potential for abusing alcohol and acknowledge her history of substance abuse as part of who she is.

Third Reading: Content Poems In this section, I have discussed three poems created from specific content areas of the text, to highlight further some of the themes in Elsie‟s narrative. I have selected three content poems that address the specific themes of ECT, memory loss, and hospitalization. (See Appendix I for all content poems.) I constructed the first poem from the portion of the text where Elsie spoke about the process of beginning ECT. They eventually just convinced me that ECT would take care of all my problems and I would be back to normal

Before the ECTs and even during the ECTs I was extremely highly medicated

I started saying how much the ECT was damaging me… and then I started asking for it, because I enjoyed the feelings that I had after the ECT (p. 34) In this poem, I touched on three of the main factors that played into Elsie receiving ECT, with each stanza featuring one of these factors. Elsie first expressed that her doctors convinced her to try ECT. Her language implied the promise of a solution (or perhaps a panacea) to her problems, although not necessarily a realistic sense of hope. Elsie‟s statements in the second

51 stanza highlighted the role of medication in her treatment at the time. Interestingly, Elsie described herself as “extremely highly medicated” before and during the period when she received ECT, despite the fact that she cited her refusal to take certain medications as one reason that her doctors initially suggested she try ECT. Finally, Elsie‟s statements in the third stanza marked her transition from questioning ECT and its effect on her memory to actively requesting further treatments (“and then I started asking for it”). Overall, the poem provides a brief snapshot, in Elsie‟s own words, of several facets of her relationship with ECT. Moving from ECT to the specific theme of memory loss, I created the next poem to bring together a number of Elsie‟s comments about her memory loss following ECT. Fear of the memory gone The memory process ECT was damaging me as far as mentally, and my memory

“There‟s a possibility it could damage your memory. It could keep you from functioning later on in life.”

And now I have lost my memory My memory has been wiped Wiped almost blank Short-term and long-term memory are extremely damaged

I don‟t have any memory, so why should I continue? (p. 15-45) This poem was atypical in that I included statements from across numerous pages of text. I did so because Elsie spread many of her comments about her memory loss throughout our conversation. Many of the statements included in this poem were Elsie‟s descriptions of losing her memory (e.g., “My memory has been wiped”), although the first and last lines were about the emotional impact of her memory loss. The first line dealt with her fear of losing her memory, whereas the last line reflected her sense of hopelessness about her reasons for living after losing much of her memory. I decided to create a separate stanza to highlight messages that Elsie wished she had received before she experienced severe memory loss, as indicated by quotation marks in the second stanza. In the first poem, Elsie‟s concerns about memory loss gave way to a desire for the mood enhancing effects of ECT. However, this poem touched on Elsie‟s sense of regret that her treatment providers did not inform her about the potential effects of ECT more fully. Ultimately, her regret seemed to turn into despair, loss of meaning, and hopelessness, as expressed in the last line of this poem. The last line recalled Elsie‟s statement that if ECT has benefited her in any way, the emotional impact of the memory loss she has experienced has nullified these benefits. The final content poem I included here contains lines from Elsie‟s description of a conversation she had with her husband about the futility going to the hospital. He says, “You think you need to go to the hospital?” I said, “What for?”

What are they gonna do for me at the hospital?

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They haven‟t helped me in the last six years So what‟s it gonna do now?

What‟s the worth? It‟s gonna be the same old stuff I‟m gonna get there and I don‟t like the situation

So… I‟m gonna tell the doctor, and Do what they want me to do, and Make sure my hair‟s parted right, and Tell them the right things, and They discharge me. (p. 99) This poem touched on Elsie‟s conflict about how honest she can be with her treatment providers, who have had the power and responsibility to have her hospitalized if they felt she was actively suicidal. In our conversations, Elsie talked about how going to the hospital had not been helpful to her in any way aside from allowing her to change her medication and providing temporary housing. Her views about empowerment and personal rights also came up in our discussion about involuntary hospitalization (namely, her belief that mental health professionals should not hospitalize people against their will for being a danger to themselves). These themes provided a context for some of Elsie‟s statements and questions that comprised this poem. I felt that the statements in the final stanza reflected her attitude toward going to the hospital particularly well. The issues of personal rights and involuntary hospitalization came up throughout our conversations, and I addressed them in more detail in the section on empowerment and disempowerment later in this chapter.

Fourth and Subsequent Readings: Contrapuntal Voices I identified two recurring contrapuntal voices that contrasted with Elsie‟s dominant narrative of violation in the mental health system. Whereas Elsie consistently spoke of herself as damaged, defective, and wanting to escape her past, these other voices offered alternative perspectives, in a sense challenging aspects of the narrative. The first contrapuntal voice I identified came from Elsie identifying herself as a professional athlete and discussing the role of athletics in her life from an early age.

Athlete Voice The athlete voice appeared early in my conversations with Elsie and offered a striking contrast to her initial presentation of herself as a defective “mental health patient.” Elsie spoke with a certain sense of pride and fondness about her experiences competing as a runner, both in college and professionally after college. Competitive running seemed to provide her with a sense of identity that was empowering in many ways, although limiting at times as well. Elsie explained that, as an athlete, she received support from coaches, trainers, and friends that she often did not receive from her family or other people in her life (“I had a support team of um, a medical doctor, a podiatrist, a massage therapist, and companies that supported me to fly all over the country,” p. 95). She also gained self-esteem from her identity as an athlete, as this role brought her respect from people and, at times, led others to overlook her flaws. She explained,

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“When I had the label as a professional athlete, I got respect.” “But… now it‟s like, you don‟t get that same respect or support” (p. 95). Elsie mentioned that, in high school, she believed teachers gave her higher grades than she deserved because she was a star athlete. Despite these benefits, Elsie‟s status as an athlete seemed to be a double-edged sword, as she felt it prevented her from getting assistance with her academic struggles to improve her reading and other skills. Therefore, while participating in athletics allowed Elsie to compensate for her learning difficulties and gain positive recognition and self-esteem, doing so also led others to view her in a one-dimensional light and ignore her other needs. Although in some ways Elsie‟s professional athlete voice challenged the notions of defectiveness and victimization that dominate her main narrative, there are aspects of her identity as an athlete that appeared very consistent with her main narrative. For example, Elsie described running as another form of addiction, since it allowed her to take her body to extremes and create an altered state of mind. In her own words, running offered her “a way to get high off the endorphins” (p. 9) and stabilize her mood fluctuations. Elsie also likened her inability to “slow down (her) thoughts” (p. 58) to her need to always finish a race when she was competing as a runner. As we spoke about this parallel, Elsie seemed to recognize the relationship between her philosophy as an athlete and her overall desire to be “goal-oriented” (p. 59), in that they both involved always trying to finish what she started. Thus, the athlete voice both provided depth to her story as well as a point of contrast to her main narrative.

Voice of Action At times in our conversations, Elsie spoke in a voice that seemed to challenge her own sense of helplessness, as well as the mental health system as a whole. During these times, Elsie sounded more confident, and even the tone of voice seemed to shift as she spoke of challenging labels and combating the silence that she noticed surrounding mental health issues. Since this voice seemed to involve a desire for a change in the status quo, either Elsie‟s own or that of society as a whole, I referred to it as the “voice of action.” However, “empowerment,” “agency,” and “anti-silence” are terms that also seemed to fit with the tone of this contrapuntal voice. The voice of action was present following Elsie‟s initial description of the long-term impact that ECT had on her memory and her overall quality of life. After describing her process of “starting over” and questioning her reasons for living, Elsie stated, “I don‟t want to be like Ernest Hemingway and just blow my brains out. I‟m gonna do something about the abuse that I went through with the ECT” (p. 19). At this point, Elsie‟s story briefly shifted from one of loss, victimization, and despair to one of empowerment, determination and action. She talked about her attempts to have the ECT she received recognized as abusive in court, and her willingness to take the case public, contacting newspapers and television stations if necessary. Elsie expressed a desire to empower herself to move past the abusive treatment she received and prevent others from being treated the same way. The theme of combating silence came out very strongly as Elsie discussed the possibility of taking her case public. She stated, “I‟m tired of people living with mental illness as being something you can‟t talk about” (p. 19). She highlighted this issue by explaining that the pastor at her church often makes a public announcement to pray for people in the hospital who are sick or injured, but not people who have experienced a psychiatric hospitalization. Elsie appeared to experience this silence as similar to her family‟s stance of not acknowledging mental health issues. Her desire to change societal attitudes and break the silence seemed to challenge these views and provide an action-oriented counterpoint to the idea of self- medicating her pain and trying to escape her past.

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In addition to challenging silence, at times Elsie talked about wanting to change how people talk about mental health issues. Specifically, she advocated for respecting the language that people use to describe their experiences, while also avoiding labels and messages that perpetuate stigma. For example, she described unhelpful messages that her husband received from his family (and to a lesser extent, from people associated with NAMI, a consumer family organization) about marrying someone who was “defective.” She explained that his interaction with people at a NAMI meeting “made him feel like he made a mistake for marrying me” (p. 67) and “he already got that from his family before we got married, I mean they- they didn‟t want him to marry me” (p.68). She paraphrased this harmful message as, “Are you sure you want to marry a nut?” (p. 69). Elsie also expressed some ambivalence about psychiatric labels, noting that they communicate that there is “something wrong” with a person, and perhaps that he or she is a “bad person” (p. 93). However, she also stated that not all labels are bad. For example, she expressed a preference for the term “disability” rather than “mental illness.” Perhaps the best example of how the voice of action came out in Elsie‟s critiques of labels and silence occurred at the end of our final conversation. Before we said goodbye, almost as an afterthought, Elsie mentioned that she was brought up to believe that doctors are “God,” noting, “If you have a doctor or a Ph.D, an M.D., or one of these professional labels… that means you know everything” (p. 97). She followed up this statement with a more irreverent (and empowering) take on such labels: Now, it‟s taken a lot of years, but I‟m finally realizing that you‟re just- you‟re just- you take – pardon my French – but you take a shit every morning, just- or I hope you do occasionally… everybody – even attorneys and doctors – hopefully take shits! But, I- you don‟t talk about that. You‟re not supposed to talk about people‟s shit. That‟s- keep that quiet. Yeah, put that in your paper! (p. 98). These statements seemed to cut to the power dynamics inherent in the labels we use in the mental health system, as well as the role of silence in perpetuating stigma because we are “not supposed to talk about people‟s shit.” One important role of Elsie‟s voice of action seemed to be to highlight such issues of power and silence. Elsie‟s desire for people to change the language they use to discuss mental health issues seemed to be a reaction to the negative views about herself that came out in her main narrative (e.g., her view of herself as defective and mentally ill). Interestingly, Elsie at first took a somewhat deferential position regarding the language she used in our conversations (e.g., stating, “You can leave out my terms if I‟m saying the wrong thing,” p. 5), but gradually she began to speak with more certainty, as the directness of her statements in the previous paragraph illustrates. Elsie‟s initial hesitance around “saying the wrong thing” may have related to her own struggles around language, as well as feeling invalidated by others regarding how she had described her experiences of psychological distress. Elsie had been criticized for using the term “mental illness” both by her family members (who believed it was an excuse for her behavior) and by people in mental health survivor organizations (who found the term pathologizing). Although Elsie seemed to agree that the term “mental illness” could be pathologizing, she also lacked other ways of communicating her distress to people in her life to convince them that it was not “all in (her) head” (p. 40). Over the course of our conversations, Elsie appeared to find alternative ways of describing her experience that challenged some of the assumptions of her main narrative (e.g., her use of the word “disability”). Thus, the interplay between the “voice of action” and Elsie‟s dominant narrative seemed present in how she discussed her experience of distress.

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Perhaps because of feeling invalidated by others, Elsie stressed a value of personal choice (e.g., regarding one‟s language, treatment, etc.) rather than an adherence to any particular approach to mental heath. For example, she explained that she did not strictly adhere to the philosophy of either mainstream consumer groups or more radical survivor groups, stating “I‟ve gotten some ideas from people who are involved with Mind Freedom (a psychiatric survivor organization), but I‟ve also gotten some excellent help and support from people in NAMI” (p. 3). As a result, Elsie took a moderate stance (“there needs to be some happy medium between the two,” p. 3), and found herself having to defend her views and choices regarding language and treatment (e.g., her decision to take medication). Even in Elsie‟s attempt to find a “middle ground,” she appeared to be seeking some resolution in her own internal dialogue. Perhaps by continuing to clarify her views, her voice of action will become a more consistent part of her sense of self.

Synthesis In each of the previous readings, I presented a slightly different aspect of the experiences, themes, and viewpoints that came up in my conversations with Elsie. Specifically, I described Elsie‟s story of feeling disempowered and defective in her experiences with the mental health system, and in her life in general. Along the way, I brought up aspects of her dominant “I voice,” along with contrapuntal voices that at times offered more empowering alternatives to her dominant narrative. My final reading involved synthesizing this content to address the research questions I initially set out to answer. Therefore, I included a review of the elements of Elsie‟s narrative that dealt with her experiences of stigma, discrimination, empowerment and disempowerment in the mental health system. In addition, I included her specific suggestions of how the mental health system could better meet the needs of the people it serves.

Stigma and Discrimination Elsie talked about experiencing stigma and discrimination in several ways. First, the issue of stigma was present in her family‟s skeptical attitudes about mental health and their tendency to avoid discussing problems openly. Perhaps one of her most significant experiences with stigma involved being told by her father that she was responsible for her own problems and was “just blaming everything on (her) mental illness” (p. 41). Because of comments such as this one, Elsie felt like there was no one in her family she could talk to about her struggles. In addition, she became frustrated with the silence that often surrounds mental health issues in society (e.g., as she experienced in her church), particularly as compared to disabilities that are more visible. Elsie spoke very little about experiencing stigma from mental health professionals, except with regard to feeling unsupported by her psychiatrist and psychologist in her claims that the ECT she received impacted her in a negative way. Specifically, Elsie talked about receiving mixed messages, particularly from her psychiatrist, who was not willing to support her claims publicly, despite having expressed to her privately that he believes ECT is problematic form of treatment. With regard to discrimination, Elsie again brought up the invisible nature of her problems, noting that she rarely felt actively discriminated against because she could usually hide her difficulties from others (“nobody really knows,” p. 50). The pressure to maintain silence seemed to be a double-edged sword for Elsie. On the one hand, silence offered some degree of protection from discrimination, while, on the other hand, silence perpetuated the stigma around talking about mental health problems because “people don‟t want to talk about it” (p. 50). Around the time of our conversations, Elsie came out about her problems in an attempt to

56 challenge the stigmatizing beliefs that perpetuate (and are perpetuated by) silence (“I‟m tired of hiding it,” p. 50). Unfortunately, she received messages about the need to remain silent from people she turned to for help. For example, she attended a vocational rehabilitation program, and the people she spoke to recommended that she not tell potential employers that she had a psychiatric diagnosis. Elsie felt frustrated by this message, as it seemed to condone discrimination toward people with psychiatric diagnoses. She explained that she would need to tell her employers about her limitations regarding what she could handle in order to receive the kinds of accommodations that would help her succeed in her job. Elsie later stressed that people with psychiatric diagnoses “deserve accommodations just like somebody with a learning disability” (p. 74). When asked about her experiences of discrimination in the mental health system, Elsie said that she had not felt discriminated against by her treatment providers. Rather, Elsie‟s main difficulties in the mental health system seemed to revolve around the issue of disempowerment.

Empowerment and Disempowerment Elsie described her treatment experiences as overwhelmingly disempowering, beginning with her extensive discussion of the negative effects of ECT on her long-term memory. Although Elsie acknowledged that she had a choice about whether to undergo ECT, she did not feel that her doctor clearly informed her about the potential side effects of the treatment. As a result, rather than allowing her to feel more in control of her life, ECT left Elsie feeling violated, disempowered, and “stripped” of part of her life (p. 18). In addition, Elsie talked about the disempowerment of having her concerns about memory loss minimized (both while she was receiving ECT and currently). In many ways, ECT led to a global sense of disempowerment for Elsie over an extended period. She explained, “The way I felt the last four and a half years – that I was a recipient, and… had to do whatever anybody told me to do… and now I‟m paying for it with my memory loss” (p. 74). Although the experience of disempowerment due to memory loss made up a large portion of Elsie‟s narrative, she also described other aspects of her treatment that left her feeling disempowered. For example, several times she brought up her hospitalizations (both voluntarily and involuntarily) and having her rights taken away because of being a danger to herself. Perhaps most disempowering and confusing to her was the experience of voluntarily admitting herself to a hospital because of having suicidal thoughts, and having doctors tell her she could not leave. In her own words: You voluntarily go to the hospital, and then all of a sudden the door shuts behind you and you can‟t get back out. It‟s like you lose all of the freedom and your rights. „Cause now you‟re mentally incompetent… and all that takes is a doctor to say that you‟re not stable (p. 51). Elsie‟s attempt to keep herself safe by voluntarily going to the hospital led to her losing freedom and rights. While in the hospital, she was unable to make her own decisions about when she could leave. Elsie explained that, as a result, she felt less comfortable with the option of going to the hospital if she were to feel suicidal again in the future. Whereas she had been inclined to ask for help if she needed it in the past, she became more reluctant to do so, noting, “If I‟m honest… I stand the risk of being detained” (p. 52). As mentioned earlier, Elsie believed being a danger to oneself was a personal right; “it‟s nobody else‟s” (p. 53). Because she did not want to remain in the hospital involuntarily once again, Elsie felt like she was running out of viable options for when she was feeling desperate. In addition to being

57 unhelpful and disempowering, Elsie‟s experiences of going to the hospital led her to be less than honest with her treatment providers. She posed the question, “Why go somewhere that you‟re gonna have to lie to get out when you‟ve tried it before and it hasn‟t worked?” (p. 52). As described earlier (and expressed in the form of a content poem about hospitalization), Elsie knew exactly what to do and say in order to get herself discharged from the hospital. Her experiences had seemingly eroded the trust between herself and her treatment providers and left her feeling skeptical about the process of treatment in general. For example, Elsie explained that she had not been honest with her therapist regarding her feelings and level of distress, telling her that she felt fine when she was actually feeling angry, distraught, and manic. She noted that her therapist had been frustrated at Elsie‟s lack of openness, and this situation affected their work together. Elsie added that her therapist had suggested that Elsie consider living in a group home, a suggestion that Elsie seemed to find invalidating, as doing so would remove her from her main support system, consisting of her husband and dogs.

Mental Health Reform Throughout our conversations, Elsie was open about making recommendations for improving the mental health system. Even before we spoke, Elsie‟s correspondence via mail and email suggested a desire to see certain practices changed, beginning with her call for hospitals to inform more explicitly ECT recipients of potential side effects of this procedure. Early on, Elsie mailed me informed consent forms that she had signed at various points during her treatment. The form that Elsie signed before receiving ECT for the first time contained small print that made vague reference to possible long-term memory loss, whereas another form she signed at a different hospital highlighted the issues more clearly. Elsie stressed the importance of providing ECT recipients with very clear information about the potential for serious life altering side effects of the treatment. She added that, by shedding light on the lack of clarity regarding the side effects of her own ECT through her court case, hospitals could be required to provide information that is more explicit to patients about these side effects. Similarly, Elsie talked about the importance of generally informing people of their rights when receiving treatment in the mental health system: Express to me that I have rights, just as a patient does going to an eye doctor… to see a different doctor, to see a different counselor, to see a different case manager if for some reason there‟s… personality conflicts, or… if I just want a different opinion (p. 74). On the surface, this particular recommendation appeared to be consistent with the legal and ethical standards of treatment utilized in the mental health system. However, it was clear that Elsie was not fully aware of her treatment options at times, as evidenced by statements such as, “I just didn‟t feel like I had…. any rights” (p. 74). One way to reduce such uncertainty might be to present information about client rights thoroughly and in multiple formats (e.g., by speaking with the client and presenting the information in writing). Mental health professionals also should review information about rights whenever a client or patient might have questions or doubts about it. In addition to informing them about their rights, mental health professionals should treat clients in a way that communicates respect for these rights. Elsie‟s suggestions about rights also brought up issues of choice and empowerment, as both were lacking in her treatment experiences. For example, she said that she was not encouraged to seek out multiple opinions regarding her treatment, and instead was left feeling like “once you get into a clique or system… you‟re at their mercy” (p. 74). As an alternative, Elsie wanted mental health professionals to be more open regarding treatment alternatives, rather than being overly reliant on any one method

58 of treatment. She explained, “It just comes down to what works and makes you productive and can live a meaningful life” (p. 83). Her suggestions here also spoke to the issue of allowing people to participate in setting the course of their own treatment. Elsie also talked about how her treatment providers relied too heavily on psychiatric medications in their work with her. She stated that, “too much focus is placed on the medication” (p. 33) and that there was not enough attention to her emotions, thoughts, and coping skills. Elsie mentioned that, although there had been times in her life when medication might have helped her feel less depressed, she did not think that medication had any long-term impact on her symptoms. She also noted that her psychiatrist seemed to attribute any change in her symptoms from visit to visit to the medication she was on, whereas she did not think that it had made much of a difference. Elsie stated that she did not “necessarily think medication is the only way to go” (p. 2), even if professionals deemed certain symptoms as physiological in nature. She highlighted her own need for help with coping, both with her symptoms and with the stigma she experienced because of them. With some hesitation, Elsie also stated that she felt the DSM was overused, stating, “I‟m sounding terrible, but… it may have its purpose in some areas, but I think it‟s- it‟s overused” (p. 88). Her hesitation and qualifying statement here (“I‟m sounding terrible”) perhaps reflected some interplay between the silence of her dominant narrative and the contrapuntal “voice of action” described earlier. Elsie also made several suggestions for combating stigma and misunderstanding regarding mental health issues. She stressed the need for increased education for the public, expressing concern that “people fail to realize that there are people with mental health issues” (p. 41). In addition, she talked about the importance of providing training for people who were not mental health professionals but might need to make referrals, such as pastors. This recommendation came from her own experience of not feeling supported or understood by the pastor at her church. Perhaps most of all, Elsie stated that she wanted family members and significant others to be better educated and more involved in the treatment process. For example, she felt that it would be helpful to bring her husband to her therapy sessions once per month to offer his perspective about how things were going (particularly given Elsie‟s memory problems). Elsie stated that if professionals better informed family members about what their loved ones were going through, they likely would be more understanding, supportive, and open-minded regarding the person‟s difficulties. She also suggested that professionals should explain to their clients or patients that it would benefit them for their family members to be an active part of the treatment process. Her point of view was somewhat surprising to me, given her strained relationship with her own family members (particularly her father). However, it appears that Elsie‟s viewpoint came out of a belief that her family could have been more supportive of her had they been better educated about the problems she was experiencing (as well as a desire for her husband to be more involved in her treatment process). Elsie also proposed that mental health professionals (e.g., rather than consumer and family organizations such as NAMI) be responsible for educating family members. She discussed this recommendation in the context of the pathologizing messages that her husband received from his family members and people associated with NAMI. Elsie repeatedly described receiving the message that she had created her own problems (“people are telling me it‟s all in my head,” p. 40) and therefore it was her responsibility to deal with them. As a result, Elsie felt stigmatized, blamed, and pathologized by how others talked about her struggles. Elsie‟s suggestion that education should come from mental health professionals implied that combating stigma and discrimination should start with professionals modeling an empathic and less

59 pathologizing stance toward people experiencing psychological distress. In addition, mental health professionals need to help the public acknowledge people‟s suffering and avoid victim blaming. Elsie also noted that counseling should involve helping people cope with stigma. In Elsie‟s words, “You need to be supported… not be condemned or be put on the side because you‟re different, you‟re weird” (p. 42). At one point in our conversation, Elsie expressed a strong dislike of psychiatric labels, and, to some extent, labels in general. As we were discussing the pressure she felt to hide the fact that she had a psychiatric diagnosis, she quickly commented on the fact that I had used the word “label” in reference to how problems were often conceptualized. Elsie pointed out that she had a visceral reaction to my use of the word “label,” calling it a word that “stank” (p. 90). She elaborated, stating that labels were overused and they influenced what other people saw in a way that was limiting. For example, as she described earlier, the “athlete” label carried a positive connotation for Elsie, but it also led others to ignore her academic needs. However, the labels of “bipolar disorder” and “mental illness” brought with them a lack of support, understanding, and respect from other people. As mentioned earlier, she further highlighted the power dynamic between herself and her treatment providers by noting, “If you have a doctor or a Ph.D, an M.D., or one of these professional labels… that means you know everything” (p. 97). Despite her dislike of labels, Elsie acknowledged that “some labels are okay” (p. 39), as they helped professionals understand and treat problems that people were having. However, she recommended two changes in how mental health professionals applied such labels. First, she recommended that mental health professionals (and others) not apply labels rigidly. Second, she suggested that people utilize more useful and less stigmatizing labels. For example, she mentioned her preference for the term “disability” rather than “mental illness,” as she found it less stigmatizing and more respectful of the whole person (rather than just focusing on “mental” deficits). Elsie illustrated her point by drawing on the analogy of using the term “chocolate chip cookie” rather than “flour and chocolate chips,” as the latter term described parts of an object, rather than acknowledging the whole product. While both “disability” and “mental illness” seem to highlight deficits and not the whole person, the spirit of Elsie‟s point posed a challenge for mental health professionals to be more thoughtful about the labels we use. With regard to counseling and other forms of mental health treatment, Elsie offered the metaphor of a car that needed a tune up or an oil change as being less pathological than labels that suggested deficiencies. Elsie offered several other practical recommendations for mental health reform that related to her thoughts about labels. In addition to preferring the term “disability” to “mental illness,” Elsie noted that people facing disabilities needed assistance with finding and maintaining employment. She also identified a need for mental health professionals to work more closely with state agencies (e.g., vocational rehabilitation programs) to help connect people with disability accommodations. She added that, in general, there had not been enough coordination between the professionals involved in her treatment, and it would help for the services she received to be less segregated and involve more of a team approach. Access to affordable services had at times been a problem for Elsie, particularly with regard to having adequate insurance coverage for counseling, testing, or other resources that go beyond hospital visits.

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Follow-up Contacts I had extensive contact with Elsie (primarily by email) before and after our phone conversations. As mentioned earlier, Elsie mailed me copies of the informed consent forms she signed when she was receiving ECT so that I could see the descriptions of the side effects on the forms. At several points in our email contact, Elsie reiterated how important her two dogs were to her, for support, hope, and unconditional love. She even sent a picture of her dogs and mentioned that she believed animals could be very therapeutic for people who were struggling with issues similar to hers. The day after our final phone conversation, Elsie emailed me to say that our conversations had helped her feel more empowered, hopeful, and free from the disempowering “chemical warfare” of her current treatment. She added that she was beginning to see patterns in her behavior that were unproductive (e.g., being too “goal driven” as a way of seeking attention and acceptance from others). She also mentioned that she felt encouraged and motivated to seek acceptance within herself (rather than from other people) and continue to proceed with seeking a legal investigation of her treatment. Elsie also emailed me a few articles about ECT and a description of her treatment that she had sent to a MindFreedom list serve. She explained that she sent these items for me to include in my project if I found them useful. Elsie also invited me to include anything she said in her emails in the present study, if I thought that it would help describe her current distress. I contacted Elsie almost three years after our initial conversation to provide feedback on what I had written. As with Sally, I asked Elsie to provide any reactions she might have to what I wrote, whether she felt I was misrepresenting her experience in any way, and whether anything had changed in her life that would significantly alter the context of anything we had discussed previously (e.g., new knowledge that contradicted anything she had mentioned in our initial conversations). Elsie initially agreed to provide feedback as soon as she could. However, I received a phone message from Elsie the day after I sent her what I had written, requesting that I call her. When I returned Elsie‟s call, she explained to me that due to several major life events, she found it too emotionally distressing to read my write-up of our conversations. She explained that her brother had died of cancer several months prior, and one of her dogs had recently died as well. Therefore, reading what she had originally said about her brother and dogs was difficult for her. In addition, Elsie mentioned that she was unable to find an attorney who would take on her medical malpractice case, as there was not enough evidence to prove that Elsie‟s doctor administered ECT in an unethical manner. She added that she began experiencing suicidal and homicidal ideation and plans (e.g., planning to shoot the doctor who administered her ECT) after she learned that she could not take her case to court, leading to another involuntary hospitalization. Elsie explained that her emotional struggles had continued due to these life stressors, and although she still wanted to provide feedback regarding my write-up, she did not know if she could do so at the time. She added that what she had read sounded accurate to her, but that she might have tried to read it too quickly at first. I encouraged Elsie to proceed at a slower pace if she needed to, and take care of herself emotionally (even if it meant that she did not provide me with feedback). I also suggested that Elsie perhaps talk to her therapist about what she felt like she could handle emotionally, as Elsie had said she already mentioned the project to her therapist. Elsie did not provided further follow-up feedback, and therefore I only included the information she provided over the phone.

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Concluding Remarks As a whole, Elsie characterized her experiences in the mental health system in terms of repeated disappointment, disempowerment, and lack of emotional support. The mental health system seemed to do little to challenge her lifelong experiences of defectiveness and violation. If ECT had any effect on Elsie, it was to bring further violation and disempowerment and become another addiction of sorts, allowing her to escape from some of her problems while creating others. The most frightening effect of Elsie‟s treatment, her memory loss, left her feeling like ECT took away part of her life, and in some ways, forced her to start over. Along the way, Elsie felt invalidated by family members and mental health professionals alike, and she received little support with regard to her memory problems. Perhaps, internal dialogue between the contrapuntal voices I have highlighted could aid Elsie‟s attempts to make sense of her difficult life experiences. In particular, the voice of action challenged her own sense of helplessness and pushed back against the invalidation she experienced, allowing her to speak out against it. Despite her negative experiences, Elsie was not entirely critical of the mental health system. Although she described a number of ways that she felt the mental health system could be improved (e.g., more explicit communication about rights, treatment options and risks; less reliance upon medication and stigmatizing labels; more education to combat stigma), she nevertheless believed that mental health professionals could be of benefit to people in distress. Her view was especially interesting given that it seemed she had rarely experienced the system as helpful to her. Elsie‟s assessment of the mental health system seemed to be that it could be helpful if people are well informed, treated with respect, and (along with their close family members) allowed to participate actively in their treatment (e.g., given choices). In fact, Elsie‟s somewhat moderate views about the mental health system had made it difficult for her to feel connected with either mental health consumer or survivor groups, as these groups represented mainstream and alternative viewpoints, respectively. The issue of power also was important in Elsie‟s narrative. In any interaction, power can affect who has permission to speak and whether people have their voices heard. Elsie touched on the discrepancy in power that certain labels can perpetuate (e.g., the labels of doctor vs. patient). A collaborative approach would require us to acknowledge such power discrepancies while also connecting around our shared humanity. Currently, we seem to lack forums where mental health professionals and people who utilize mental health services can discuss such issues openly. For example, professionals and clients could utilize the internet to discuss issues of power and professional labels. Although many mental health consumer, survivor, and professional organizations offer websites and electronic mailing lists to promote dialogue among each of these groups, it may also be helpful to facilitate more dialogue between people who provide services and people who utilize services. Conferences devoted to the open sharing of ideas regardless of one‟s professional status are another way to prompt such dialogue. For example, a conference on mental health reform would have a very different feel to it if it consisted of mental health professionals as well as mental health consumers and survivors (i.e., as opposed to just mental health professionals). One such conference occurred in 2007, when members of the World Psychiatric Association met consumer and survivor groups at a conference on coercive treatment in psychiatry. In addition, the International Center for the Study of Psychiatry and Psychology is an organization that consists of mental health professionals, as well as psychiatric survivors, family members, and advocates. This organization has routinely held conferences attended by each of these groups of people. However, most professional conferences rarely involve this type of dialogue. Finally, on an individual level, therapists can promote dialogue by

62 facilitating process discussions with their clients about the issue of power within the therapy relationship (and in the mental health system as a whole). I conclude with the description Elsie gave of herself at the beginning of our second conversation (mentioned earlier). However, I repeat it here in the form of a poem, to emphasize the power that language can convey – the power to spur us to action, to move us to tears, or to keep us entrenched in a certain way of viewing ourselves. Looking on Elsie‟s words again, I further appreciate her attempts to view herself as no longer: An incompetent zombified electric shocked mental health patient.

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Chapter 5: Results - Participant 3 (Marcia)

Marcia was a single Caucasian (and part Native American) woman in her mid-40s who had contact with the mental health system for around 13 years. Marcia did not identify herself as “mental health consumer,” although her views about the mental health system seemed very consistent with the mental health consumer movement. Marcia and I met in person at an office where she attends a social club for people diagnosed with mental disorders. We spoke for about an hour and Marcia shared with me information about her background and experiences of inpatient and outpatient treatment in the local mental health system. Specifically, she described her history of individual and group counseling, medication, and numerous hospitalizations. Marcia granted me permission to make an audio recording of our conversation that I transcribed and analyzed using the same method I used with previous participants. The format of this section is identical to how I presented the results for the previous two participants. See Appendix J for the entire transcript of our conversation.

First Reading: Main Narrative Marcia spoke in an open manner about her history in the mental health system; although she mainly focused on how she has benefited from the services she has received. Therefore, her assessment of the mental health system was very favorable. Marcia explained that she first entered counseling about 13 years ago and began seeing a psychiatrist shortly thereafter. Her treatment providers diagnosed her with posttraumatic stress disorder (PTSD) due to having a history of sexual abuse and experiencing flashbacks. Marcia added that she felt depressed and had suicidal thoughts since before she first entered counseling. She also experienced auditory and visual hallucinations that were been accompanied by homicidal thoughts at times in the past. Marcia was prescribed various medications to manage her symptoms over the years, and she was been hospitalized a number of times (most recently several months prior to our conversation) because of recurring suicidal and homicidal thoughts. For the most part, Marcia was able to manage her symptoms through medication and counseling, although she mentioned sometimes having changes in her medication when she is feeling more symptomatic. She described benefiting from the social support of friends who were also dealing with psychological difficulties, and emotional support from her niece and adopted son. I noticed several dominant themes in Marcia‟s narrative, including disconnection from her family and background (e.g., her cultural heritage; her father), self-blame regarding traumatic events (e.g., being sexually abused; her mother‟s death), and learning to voice her opinion.

Plot/Themes The themes of Marcia‟s narrative emerged in the context of her family history and its contribution to her contact with the mental health system later in her life. Marcia began describing her history by stating that she was one of eight children (“there was four boys and four girls,” p. 1), and that her mother and stepfather were both alcoholics. She then briefly explained that her oldest sister, who had passed away 3 years prior to our conversation, had a diagnosis of paranoid schizophrenia. She stated, “Her and me were the only two out of eight kids that were- that went and had a diagnosis done” (p. 1), possibly implying that other members of her family suffered from undiagnosed psychological conditions. She said little else about her other siblings, other than noting that she was close with her second oldest sister. When asked about her relationships with specific family members, Marcia described being close with her

64 mother, who she lived with until the age of 40 (moving out shortly before her mother‟s death). At times Marcia seemed to downplay problems with her mother and stepfather‟s alcohol use, stating that her family was close despite their drinking. However, she gradually began talking about the trauma of experiencing sexual and emotional abuse by her stepfather and the role the abuse played in her decision to enter counseling. Marcia highlighted her relationship with her adopted son (she was actually his great-aunt) and her niece, both of whom lived with her at the time of our conversation and seemed to be her closest family members. The most notable omission in Marcia‟s description of her family was her father, and when asked about this omission she explained that he left at an early age and they never had a relationship. The omission of her father seemed to relate to the prominent theme of disconnection that appeared in Marcia‟s narrative. Early in our conversation, Marcia made several comments about not feeling connected to her family‟s history. She explained, “I‟d like to know more about my heritage, background, but my- my real father, he‟s dead… and I couldn‟t get any information from him even if I wanted to ‟cause… he had nothing to do with us” (p. 2). The fact that Marcia‟s father left her family when she was very young seemed to contribute to her sense of disconnection, and possibly to her psychological symptoms later in life. She expressed some ambiguity associated with this loss, explaining that, although she did not have a relationship with her father, he tried to come back into her life when she was in second grade. Marcia recalled, “He came by the house to see me and he wanted me to move in with him, but my mother wouldn‟t allow it” (p. 7). Although this was the last time Marcia saw her father, she recalled an incident several years later when he invited several of her siblings to visit him at their grandmother‟s house, but did not invite Marcia. In what was perhaps her ultimate summary of their relationship, Marcia stated, “He did not ask for me. He had a picture of me in his pocket, but he claimed I wasn‟t his daughter. Yeah, I mean there was no love lost ‟cause there was none there to begin with” (p. 7). Years later, Marcia learned of her father‟s death through an obituary for his sister that mentioned he had preceded her in death. With regard to her cultural heritage, Marcia stated that she knew very little about either side of her family. Although she had no contact with her father‟s family, she did not appear to have much contact with her mother‟s family either. She noted, “I wish that I could find my family tree. That‟s one thing I wish I could do, but I can‟t because I don‟t know nothing about either side of my family” (p. 3). Marcia added that she never discussed her family background with her mother when she was alive. One aspect of her ethnicity that she was aware of was being part Cherokee, although she did not say whether this was part of her father‟s or her mother‟s ethnicity. Marcia stated that, although it did not play much of a part in her life, she still valued this aspect of her heritage. Upon briefly reflecting on the matter, Marcia added, “But, you know, I read up on stories from long ago, what happened to Indians and stuff, and I think… that was wrong” (p. 2). Perhaps Marcia related to the trauma and loss suffered by Native Americans. “They‟re still struggling today to get back what was took from ‟em” (p. 2), she added. Marcia seemed proud of this part of her cultural identity, perhaps because of how little she knew about the rest of her ethnicity. Unfortunately, the family members she did have in her life were not always able to provide the support that Marcia needed. She explained that her stepfather sexually abused her from at least as far back as age five almost until age 15. In addition, she stated that her stepfather became verbally abusive toward her once she began standing up to him:

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When I was in the teenage years, it wasn‟t what he did; it was what he was saying. You know - verbal abuse. And it was… because I took up for myself… when I was 13. That‟s when I first started talking back to him when he was trying… and I wouldn‟t allow it, and he knew that I meant business (p. 5-6). Eventually, Marcia was able to get her stepfather to stop sexually abusing her (“I wouldn‟t let him,” p. 6), although the verbal abuse continued for a time. Despite his abusiveness, Marcia maintained a relationship with her stepfather up until his death (when she was in her mid-20s), explaining, “somehow even though what happened, happened, always I would, um… go to him for answers” (p. 4). Marcia also mentioned that her mother‟s brother sexually abused her once when she was seven years old. She stated that she rarely thought about this event, and found her stepfather‟s abuse of her more emotionally distressing. However, unlike her stepfather, her uncle was still living. Marcia talked about how difficult it was to see him, stating, “every time I see him I think back to what he did and I want to hurt him so bad but I don‟t” (p. 10). Although Marcia tried to avoid thinking about the trauma of her sexual abuse, she was not always able to do so, explaining, “I try to push it at the back of my mind and not even think about it. But there‟s times I have flashbacks” (p. 10). Clearly, the emotional impact of her repeated sexual abuse was not something Marcia could simply avoid thinking about, and she eventually decided to seek out help to work through the trauma of these experiences. She explained that she typically experienced flashbacks more often when she was feeling very depressed, and that throughout much of her life she blamed herself for the abuse Self-blame seemed to play a significant role in Marcia‟s life, specifically in the development and maintenance of her psychological symptoms. When discussing her abuse, she stated, “I always thought back then that it was my fault; that I did something wrong” (p. 4), also adding, “I used to think, „What did I do wrong?‟” (p. 5). Marcia‟s self-blame perhaps was an attempt to make sense of her traumatic experiences as a child. Marcia explained that she did not feel like she was able to tell anyone about the abuse, and, at the time, she thought that her mother knew about the abuse but chose not to do anything about it. Marcia finally told her mother about the sexual abuse around three years before her death. At this time, her mother told her she was not aware of the abuse, in part because of her heavy alcohol use during Marcia‟s childhood. Marcia explained, “She said she didn‟t know what was going on, of course because she was a really bad alcoholic, and she didn‟t realize what he was doing until I told her” (p. 9). Nonetheless, her mother was supportive and understanding when Marcia finally told her about the abuse, in part because her own stepfather physically abused her and attempted to sexually abuse her when she was a child. As Marcia became an adolescent, her sense of self-blame seemed to diminish enough for her to fight back against her stepfather. Marcia explained, “I finally was able to stand up for myself and tell him, „No. You can‟t do that.‟” (p. 6). However, the early invalidation she experienced and the self-blame that accompanied it seemed to remain with Marcia in the form of traumatic memories, negative beliefs about herself, and intense emotions. Her sense of self- blame persisted long after the sexual abuse ended and even after her stepfather‟s death. She maintained a relationship with her stepfather throughout the remainder of his life, perhaps making it more difficult to acknowledge the full impact of his abuse until after his death. At one point in our conversation, Marcia attributed her stepfather‟s verbally abusive comments to his drinking. She stated, “I had to ignore it because it was the… the whiskey talking” (p. 6), a comment that seems to remove some responsibility from him. Marcia also mentioned that she

66 blamed herself for her mother‟s death later in life, because it occurred a week after Marcia finally moved out of her mother‟s home at age forty. Marcia explained, “I used to blame myself really bad, thinking if I hadn‟t moved she wouldn‟t have died. Well, she died of a massive heart- attack in her sleep” (p. 8). Marcia began counseling 13 years prior to our conversation, when she first took her adopted son to see a counselor because of his aggressive behavior. She recalled joining a parenting group while her son was in counseling and requesting an individual counselor because she was experiencing flashbacks, depressive symptoms, and suicidal ideation. Marcia explained that she worked on the issue of self-blame in therapy, noting, “My counselor helped me realize what had happened was not my fault at all” (p. 4). She worked with her first counselor for six years, and had two other counselors afterward (one for five years and the one with whom she had been working for two years). She also began working with a psychiatrist shortly after beginning counseling, who was prescribing Marcia Seroquel, Trazidone, Lamictal, Risperdal and Topamax at the time of our conversation. Her other supports included a women‟s group, a social club, and, in the past, several self-esteem groups, art groups, and a group that involved creating a mental health newspaper. Marcia explained that, since she started counseling, she was hospitalized multiple times because of suicidal and homicidal ideation (“so many times I‟ve lost count,” p. 22), most hospitalization occurring about eight months prior to our conversation. Marcia described her experiences in the mental health system in the context of how they had benefited her over the years. She explained that counseling helped her learn to voice her opinion, while taking psychiatric medication helped her control her hallucinations and other symptoms. She even described going to the hospital in a positive light, noting that it helped her feel safe and stabilize her symptoms whenever she was not doing well. She stated that when she was first in the hospital a few years prior to our conversation, she entered voluntarily and stayed for about a week until she no longer felt suicidal. Marcia explained, “I was having them real bad suicidal thoughts and I was- it was scaring me” (p. 21). She elaborated on why going to the hospital was helpful to her, stating, “I had um, therapy groups in there and I was able to talk to the nurses when I needed help” (p. 21). Marcia typically returned home from the hospital when she felt more stable, although she noted that she once was required to stay in a residential facility for about two months upon leaving the hospital. She said very little about this experience, other than that she was ready to return home once she was allowed to leave. Marcia placed a great deal of importance on her first counseling experience, in that it helped her confront traumatic events from her past. Marcia‟s description of her first time in counseling seemed to suggest that it was a cathartic experience for her: The first time I saw the counselor she asked me you know, about my background, and usually I don‟t tell nobody right off the bat until I get to know ‟em. Well that day I just- it- I just- it all come out all at once and I explained everything (p. 11-12). Marcia described her surprise at the fact that she told her counselor so much about herself and her past trauma. She also talked about feeling relieved and very emotional at the time, explaining, “I needed to talk to somebody to get it off my chest… I didn‟t believe I‟d actually tell somebody what happened when- but it felt good. It felt like a big ole weight lifted off of my shoulders” (p. 13). Marcia added that deciding to begin counseling was the first step in changing the direction of her life, explaining, “If I hadn‟t went when I did, I don‟t know how I- or where I‟d be today; you know if I‟d be in the hospital in the psych ward, or put in the institute place” (p. 14).

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Marcia‟s decision to request a counselor and begin talking about her past required her to confront painful memories and share them with her counselor. Taking this initial risk seemingly helped Marcia find a voice for what had long gone unspoken. In Marcia‟s own words, “I was able to express how I was feeling and what made me feel like that… Another thing they did was they made me feel, you know, that I am in charge of making my own decisions” (p.30). Marcia explained that her second counselor in particular helped her feel more comfortable talking to other people (and speaking in front of groups), stating, “I used to not talk a lot, like this. But uh… since I had seen her she got me motivated into talking a lot” (p. 34). A particularly significant moment for Marcia was giving a speech for this counselor at her going away party: I had actually wrote a speech and there was about 15-20 people here. And I read- I got up and I read the speech in front of everybody and I- in fact, I looked at ‟em, I said, “If each and every one of you have something to say to (her counselor), why don‟t you say it now one at a time. Tell her what you think about her. And they all got up one at a time… (p. 34). Marcia described several aspects of counseling that she felt helped her find her voice, stating that her counselors were “nice” and “they understood” (p. 13). In addition, she mentioned that she liked the fact that counseling was confidential, and, for the most part, she could decide whether her counselors could share information with others. When asked specifically about what helped her feel more motivated to talk to others, Marcia stated that it was her counselor‟s “kindness” and “willingness to help out” (p. 34). In finding support through counseling, Marcia not only found a voice for her struggles, but gradually became able to confront her fear of interacting with other people (“I was afraid that… I wasn‟t gonna like ‟em or they wasn‟t gonna like me,” p. 35). Being able to interact more comfortably, in turn, allowed her to feel more connected to others.

Characters Marcia‟s narrative contained a number of important characters that had affected her life. It appeared that her early life was influenced primarily by her father‟s absence and the home environment created by her mother and stepfather. The main themes in Marcia‟s narrative (self- blame and expressing her voice) seemed to stem from her relationships with her mother and stepfather. Marcia‟s stepfather seemed to alternately play the roles of harmful abuser and paternal problem-solver, the latter filling a void created by the absence of Marcia‟s father in her life. The dual role that he played in her life seemed to make for a complicated relationship between the two of them, as implied by her hesitance to blame him fully for the abuse she received. In part, Marcia attributed her stepfather‟s repeated sexual abuse and later emotional abuse, as well as her mother‟s ignorance of the abuse, to alcohol. Despite her mother‟s use of alcohol, Marcia stated that they had a close relationship and they lived together for most of Marcia‟s life. However, Marcia was only able to tell her about the past abuse several years before her death. Marcia‟s uncle was a less prominent (but also influential) character from her childhood. His role in her narrative was much less complicated than her stepfather‟s role, as she seemed to have little contact with him aside from his sexual abuse of her when she was seven. Although she stated that she did not think about her uncle much, she also admitted to having strong feelings about him (e.g., wanting to “to hurt him so bad,” p. 10), and flashbacks of his abuse. Perhaps, because they did not have much of a relationship, Marcia seemed to have little ambivalence about her feelings toward her uncle (as opposed to her feelings toward her stepfather).

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Marcia‟s father was one other figure from her early childhood who played a significant role in her narrative, despite, or perhaps because of, his absence in her life. She made several comments that suggested she felt unwanted by him. For example, she mentioned that her father claimed she was not his daughter and had not contacted her since she was a child. At points in our conversation, Marcia denied wanting to establish a connection with him. For example, she stated that not having a relationship with him did not bother her, adding, “How could it when I had no feelings for him?” (p. 7). The absence of Marcia‟s father also seemed to set the stage for her to maintain a relationship with her stepfather until his death, as he was the only father figure Marcia had in her life. Marcia generally described the characters in the latter part of her life narrative in a more positive light. Her adopted son (who is 17) and her niece (who is 27) were a significant part of her support system. These relationships reflected a maternal role that Marcia seemed to take on in her family. Marcia explained that she raised her great-nephew since he was a year old, adopting him when he was ten. Her niece lived with her for four or five years, along with her niece‟s three-year old son. In exchange for living with Marcia, her niece helped with household responsibilities, “She likes doing the cooking. She- she helps us with the cleaning of the house. She goes- picks up my checks for me. She goes to the grocery store for me” (p. 28). Marcia also gave an example of how her family members helped her recognize when she is becoming symptomatic: Lately I‟ve had aggressive behavior towards people here… Like yesterday, I had an argument with my son, and he‟s trying to talk to me calm, but here I am flying off the handle. He said, “Mom, you‟re not yourself. What happened? What‟s wrong?” “Nothing‟s wrong,” that was my attitude. I didn‟t want to tell him that something was wrong. And then I- after I stopped awhile and thought about what I was saying, I realized, th- there‟s something going on, um… that… needs to be addressed with the doctor (p. 22-23). Other important people in her life included her counselors, her doctors, and her peers from the social club she attended. These people played a large role in helping Marcia cope with her chronic symptoms over the years. The way Marcia spoke about counseling suggested that she experienced a great deal of personal growth through counseling. For example, her description of her relationships with her psychiatrist and counselor suggested that she trusts they have her best interests in mind. She explained that hearing she had the right to make her own choices regarding treatment was especially helpful in solidifying her relationships with her treatment providers. For example, she described being told, “If I felt that they wasn‟t doing something right, I had a right to let ‟em know” (p. 30). With regard to her peers at the social club, Marcia talked about feeling supported and accepted by them, something that was invaluable to her in a society where she did not feel accepted. She explained: See we all… here all together got a mental illness. We all come here to talk with each other, ‟cause here they don‟t discriminate. You know, we can be ourselves… everybody here just about has the same problems… they don‟t judge us here like the outside world does. They look at you as if you‟re not worth talking to. The people here don‟t judge you like that. We all stick together (p. 24-25).

My Reactions One of my initial reactions when I first began speaking with Marcia was uncertainty about whether our conversation would yield enough information that was relevant to my study.

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In contrast to my other participants, who were extremely talkative, Marcia‟s responses to my first few questions seemed somewhat sparse and vague. At times Marcia provided factual information to my questions (e.g., the number of siblings she had; the fact that she and her sister were the only two people in her family to receive a psychiatric diagnosis), but did not elaborate on her relationships or feelings much. When she did discuss her relationships with family members, she also spoke in vague terms at first (e.g., “close” vs. “not close”). However, after some prompting, Marcia began to open up, first about her sexual abuse history and then about dealing with self- blame regarding the abuse through counseling. From this point on Marcia appeared more comfortable and seemed to speak more openly about her experiences (rather than just providing facts about her life). Even though many of her responses were short, they contained a raw honesty and simple wisdom at times. Over the course of our conversation, Marcia continued to elaborate on her responses when prompted and communicate her views and feelings about the mental health system. However, she described most of her experiences in the mental health system as positive, offering very little criticism. With regard to her first time visiting a psychiatrist, she expressed concern that he was talking at her, but she attributed this concern to the fact that she did not yet know him or realize that he was trying to help her. Marcia‟s suggestions for mental health reform were all things that she had found helpful in her own treatment and felt were happening already. Although she said that was encouraged by her treatment providers to express herself if she disagreed with certain aspects of her treatment, Marcia said that she has never felt a need to do so. The fact that Marcia downplayed her experience of feeling like her doctor was talking down to her prompted me to feel uncertain about whether Marcia would feel comfortable offering criticism toward the mental health system if she did have any negative experiences. Ultimately, I decided to trust and respect Marcia‟s decisions about what she chose to discuss in our conversation, while also keeping in mind that there might be things she did not feel comfortable disclosing to me (after all, I am part of the mental health system I was asking her to critique, and we had only just met).

Second Reading: The Voice of the Speaker As with my other participants, I drew from the text of my conversation with Marcia to generate a number of “I poems.” I chose three “I poems” to present in the following section to highlight several aspects of Marcia‟s subjective “I” voice. (All of the “I poems” generated for Marcia are in Appendix K.) The first poem I included was one that I created to reflect how she spoke about feeling disconnected from her family history and ethnic background. All of the I- statements in this poem are from the portion of the text where Marcia discussed this feeling of disconnection: I‟d like to know I didn‟t I couldn‟t I wanted

I would‟ve liked to know I would like to I have no idea

I-

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I- I‟m sure I guess I don‟t know if I got heritage

I‟m really interested I wish that I could I wish I could

I can‟t I don‟t know I used to want I can‟t (p. 2-3) By examining Marcia‟s I-statements to create this poem, I found myself focusing on the emotions she expressed, rather than the specific issues that prompted these emotions. Marcia‟s I- statements in this poem seemed to communicate uncertainty, longing, and perhaps a sense of helplessness as well. Marcia alternated between expressing her desire for knowledge about her family history and expressing her lack of knowledge about it. For example, she used statements such as “I‟d like to know,” “I would‟ve liked to know,” and “I‟m really interested,” but followed them with comments of, “I can‟t,” “I don‟t know,” and “I have no idea.” This contrast is perhaps most notable in the transition between the fourth and fifth stanzas. The fourth stanza begins with her statement “I‟m really interested” and then shifts to a repetitive expression of longing (“I wish that I could; I wish I could”). However, in the fifth stanza, Marcia‟s interest and desire seem to quickly deflate and become relegated to the past (“I used to want”), and are replaced by the helplessness of “I can‟t.” The second poem that I have selected highlights how Marcia talked about her sexual abuse history very early in our conversation. Each of the I-statements in this poem is from Marcia‟s initial description of her sexual abuse experiences. These statements include her expressions of self-blame as well as her description of beginning to stand up for herself. I always thought I did something wrong I got into counseling I started counseling I- I used to think “What did I do wrong?”

I had him I had a uncle I was seven I never I was I could remember I was

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I was almost I was

I took up for myself I was I first started talking back I wouldn‟t allow it I meant business I was finally able to I wouldn‟t let him (p. 4-6) I divided this poem into three stanzas, with the first stanza containing Marcia‟s statements about viewing the sexual abuse as her fault before she began counseling. Marcia‟s I- statements in this stanza communicate her sense of self-blame (“I did something wrong”), but also suggest that the self-blame is in the past (“I used to think”). The second stanza contains more factual statements about the abuse she experienced and her memories of it (“I had a uncle;” “I was seven;” “I could remember”). Perhaps because of the painful nature of her memories, Marcia‟s I-statements began to move away from her thoughts and actions and instead took on a more passive tone. However, her I-statements shifted again in the third stanza, reflecting the sense of agency she attained that enabled her to take action against her abuser. Statements such as “I took up for myself,” “I wouldn‟t allow it,” and “I meant business” presented a stark contrast to the self-blame that Marcia described experiencing in the first stanza. These statements also provided a context for the final “I poem” I will discuss in this section, a poem that dealt Marcia learning to express her voice. I know I‟m able to tell somebody “I don‟t want to do that”

I used to feel If I said “no” I felt real guilty I don‟t feel guilty If I need to say “no”

I had the right I mean I didn‟t I did I expressed I felt I had a right I don‟t like this I could speak I want to I didn‟t feel like it I didn‟t want to

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I didn‟t have to I had- I got to make my own choices

I said I felt good I wasn‟t never taught to speak up I was able to voice my opinion I had to say I speak up I see I will voice my opinion (p. 30-32) The statements that comprise this “I poem” came from the section of the text where Marcia discussed how her experiences in the mental health system helped her feel more empowered. As such, the I-statements in this poem seemed to trace Marcia‟s process of learning to express herself without feeling guilty. The poem began with Marcia asserting her voice by stating, “I know,” “I‟m able to tell somebody,” and “I don‟t want to do that.” Her I-statements then shifted to her past guilt about saying “no.” With regard to saying “no,” Marcia used the past tense, stating, “I felt real guilty,” but quickly followed in the present tense with the statement, “I don‟t feel guilty.” Marcia then switched primarily to past tense as she talked about the messages she received in therapy about choice and asserting her opinion (e.g., “I had the right,” “I expressed,” “I could speak,” and “I got to make my own choices”). The final section of this “I poem” contains a few more statements in past tense (e.g., “I was able to voice my opinion) as well as a feeling statement (“I felt good”), before finally ending with an expression of confidence regarding the future (“I will voice my opinion”). As a whole, the simple I-statements in this poem seemed to speak volumes about Marcia‟s transition toward a more empowered sense of self.

Third Reading: Content Poems In this section, I have presented three content poems that highlighted specific aspects of Marcia‟s life narrative. I chose poems that touched on the topics of hearing voices, taking medication, and speaking up, as these topics were significant pieces of Marcia‟s narrative. I generated several other “content poems,” all of which are in Appendix L. The first poem in this section deals with Marcia‟s experience of hearing voices, and contains statements from the portion of the text where Marcia first discussed this experience. I was hearing these voices Here‟s the child‟s voice Here‟s the female voice Right in the middle is the male voice

The male voice was more growly- grouchy It was telling me to kill each member of my family Just to see what it was like killing somebody That really scared me

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Them voices It‟s been about a month or two since I‟ve heard any voices (p. 18-19) The statements I included in this poem offered a sense of how severe Marcia‟s symptoms have been at times, and my intention in creating this poem was to enhance the emotional impact of her statements. The first stanza consists of statements that introduced the voices Marcia was hearing, locating each of them spatially (i.e., the male voice in “the middle” with the female and child voices on either side). I then created the second stanza using several of Marcia‟s statements about the male voice. The male voice seemed to play a more dominant role than the others she described, and perhaps this is why she experienced it as “the middle” (i.e., central) voice. I chose to include her specific statements about the male voice to communicate how frightening Marcia‟s voices have been at times in her life. Ultimately, Marcia told her psychiatrist about her voices and received medication that she said helped her feel safe. For the most part, Marcia described the medication she takes as being helpful. However, she expressed some frustration about the number of medications she is prescribed. Her frustration comes across in her statements that make up the next content poem: It was my third or fourth time in the hospital They had me on like Ativans at the time I was just hallucinating I get real tensed and irritated for no reason

I‟m on… Seroquel, Trazidone, Lamictal, Topamax Risperdal Consta – that‟s a shot Consta or something like that

He was gonna put me on another pill “Don‟t you have a shot you can give me Instead of putting me on another pill?” I‟m on enough pills as it is You might as well call it a drug store That‟s how many pills I got

I‟d rather have a shot than to take a pill I know he‟s gonna put me on another pill When I tell him how I been feeling How irritable I been feeling (p. 21-40)

I began the second content poem with Marcia‟s mention of her “third or fourth time in the hospital,” during a period in her life when she was once again hallucinating and feeling unsafe. Marcia stated that she was only taking Ativan at the time, in contrast to the laundry list of medications that she currently takes, as recounted in the second stanza. In the third stanza, Marcia follows her matter-of-fact recitation of the medication she is on by expressing her frustration with the number of pills she takes. (“I‟m on enough pills as it is,” “You might as well call it a drug store, that‟s how many pills I got”). Marcia‟s language here seems to reflect a sense

74 of inevitability and helplessness with regard to her medication. For example, her statements in the final stanza of the poem seemed to suggest that whenever she has felt more symptomatic, the response from her doctor has been to increase her medication (“I know he‟s gonna put me on another pill when I tell him how I been feeling”). Aside from occasionally negotiating with her doctor to take certain medications via injection rather than in pill form, Marcia, apparently, has had little say regarding decisions about taking medication. Her lack of voice in this context seemed in contrast to the importance she placed on expressing her opinion throughout our conversation. The final content poem in this section returned to the issue of being able to speak up. They told me I could speak if I want to It was okay for me to speak up I wasn‟t never taught to speak up Not speaking

I was able to voice my opinion It used to be nobody didn‟t wanna hear what I had to say Now they take it into consideration I will voice my opinion then Even though it‟s not my place to say something I will voice my opinion then (p. 31- 32) The statements I included in the final content poem reiterated the idea that Marcia‟s treatment in the mental health system involved the message that she could express her opinion. This message differed from those she received from people in the past, such as some of her family members. For example, she stated, “It used to be nobody didn‟t wanna hear what I had to say,” and “Now they take it into consideration.” The shift in how others treated Marcia seemed to make it easier for her to voice her opinion, even when it was unsolicited. What seemed to go unspoken in this poem was the apparent lack of dialogue in her relationship with her psychiatrist with regard to medication. The apparent contradiction between having her opinion taken into consideration and the assumed inevitability of an increase in her medication may suggest a counterpoint to Marcia‟s dominant narrative of learning to speaking out. I will elaborate on the presence of such alternatives to her dominant narrative in the next section.

Fourth and Subsequent Readings: Contrapuntal Voices Marcia‟s main narrative dealt with themes of disconnection (from her family and cultural background), coping with past trauma, and learning to develop and assert her voice. Although Marcia primarily highlighted these issues, two other themes stood out that seemed to compliment and flesh out her main narrative. First, Marcia made repeated references to times in her life when she held back and was not able to express herself, thus expressing a counterpoint to her ability to speak up. I called this apparent tendency toward lack of expression, the contrapuntal “voice of silence.” The other contrapuntal voice that I noticed is slightly more complicated in that it typically came up in the context of Marcia literally hearing voices. I decided to call this second contrapuntal voice, the “voice of aggression” because it encompassed feelings of anger and some of the more violent urges that Marcia described.

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Voice of Silence Because learning to express herself was such an important theme in Marcia‟s narrative, the voice of silence came up primarily in the context of her past behavior. For example, as mentioned earlier, Marcia said that she previously had difficulty speaking in front of people and interacting with others in general. She talked about her past fear of participating in groups and her refusal to participate in activities at the social club she now frequents and finds supportive. Marcia stated, “I didn‟t think I was ever gonna participate here… or have anything to do with anybody here” (p. 35). She used the metaphor of being in a shell to describe her silence, stating, “I was in this real tight shell that I didn‟t want nobody get to me… or that nobody bother me, or get close to anybody” (p. 36). Delving deeper into the past, Marcia explained that she received early messages from her family that taught her to keep silent. She stated, “I wasn‟t never taught to speak up… It was all held back. Like the old saying back then, uh… „A child could be seen but not heard.‟ You know, not speaking when they should” (p. 31-32). These messages seemed to play out in the sexual abuse that Marcia received as a child, as she did not feel that she could tell anyone about the abuse or stand up to her stepfather for many years. Without the ability to talk about what was happening to her, Marcia blamed herself for the abuse until much later in her life. The theme of self-blame came up again when Marcia talked about blaming herself for her mother‟s death. It appeared that, in general, when Marcia was not able to express herself, she turned her feelings inward and blamed herself for painful events in her life. Although Marcia spoke extensively about how she “broke the shell” (p. 36) and was able to express herself when she needed to, remnants of the “shell” still seemed to find their way into Marcia‟s narrative. For example, Marcia rarely expressed disagreement or criticism in her interactions with treatment providers. She explained that her previous counselor told her she had a right to disagree with her treatment providers and that it felt good to hear someone tell her she could express her opinion. However, Marcia said she never actually expressed disagreement with her counselor or psychiatrist. She explained, “I didn‟t let no real bad negative come out of my mouth… if I did, I expressed a way that it wouldn‟t hurt nobody‟s feelings” (p. 30). Later in our conversation, when I asked Marcia if she had any experiences in the mental health system that felt disempowering, she quickly responded, “Nope, there‟s nothing like that, that‟s bothered me… Everything‟s been good. There was never a time that it hasn‟t been good” (p. 37). Although it was certainly possible that Marcia‟s experiences in the mental health system were overwhelmingly positive, some of her other comments suggested that she did not feel comfortable offering criticism of the treatment she has received. For example, despite her previously mentioned frustration about taking so many pills, she did not seem to feel she could address her concerns with her psychiatrist (aside from asking to receive her medication via injection rather than in pill form). Based on Marcia‟s statements, it appeared that it was somewhat difficult for her to express her opinion when it involved criticizing or disagreeing with mental health providers. At one point in our conversation, Marcia offered some criticism about her initial interaction with her psychiatrist, mentioning that she felt that her psychiatrist was talking at her rather than talking to her. She explained that she was scared of her psychiatrist when they first met, and refused to return for a second visit. However, Marcia later took responsibility for her discomfort, stating that she was only scared because she did not know him and did not realize that he was actually trying to help her. She added, “I hadn‟t had my eyes opened all the way to see that he was actually talking to me… Now he‟s been good so far. I haven‟t had no problems with him” (p. 38-39). Here, the theme of self-blame came up again (albeit in a less traumatic

76 context than it had earlier in her life), as Marcia seemed to blame herself for feeling uncomfortable around her psychiatrist. Her description of this encounter seemed to suggest that, rather than expressing her opinions openly with mental health providers, Marcia had held back and perhaps even turn her concerns inward.

Voice of Aggression The other contrapuntal voice that stood out against the backdrop of Marcia‟s main narrative seemed to challenge the voice of silence directly. The voice of aggression appeared in the context of Marcia‟s feelings of anger, violent urges, nightmares, and hallucinations. At times this voice manifested in subtle ways, such as through irritability or aggressive impulses. For example, as mentioned earlier, Marcia sometimes felt like hurting the uncle who sexually abused her when she was a child. Marcia talked about dealing with these urges by trying to ignore them. She explained, “I try to push it at the back of my mind and not even think about it” (p. 10), because it is “too late to have anything done” (p. 10). At other times when Marcia felt irritable, she took out her feelings on her son and niece. For example, she mentioned that she had recently noticed herself arguing with her son and “flying off the handle” (p. 23). Marcia explained that she often did not realize she was acting aggressively until other people pointed it out to her (“People tell me, „You‟re not acting like yourself,‟” p. 23). For example, in the aforementioned interaction with her son, Marcia recalled him saying, “„Mom, you‟re not yourself. What happened? What‟s wrong?‟” (p. 23). Marcia said she responded by saying, “„Nothing‟s wrong,‟” noting, “I didn‟t want to tell him that something was wrong” (p. 23). In this interaction with her son, there seemed to be some interplay between the voice of aggression (as evidenced by her irritability and arguing) and the voice of silence (as evidenced by her attempts to avoid talking about how she felt). Marcia said that she ultimately acknowledged her feelings and decided to talk to her psychiatrist about them, who presumably helped ward them off by increasing her medication. At times in her life, the voice of aggression appeared in less subtle ways, and had a significant impact on her behavior. For example: When I first start talking to the doctor, I told him I kept having this bad dream of… about eight men dressed all in black that would take me up to the river here… wanting to throw me off the bridge, but I wouldn‟t let ‟em. And every time I‟d look in the water I would see my niece‟s face looking up at me, smiling. And I couldn‟t figure out what that meant (p. 15). Marcia talked about feeling frightened by the men in her dream, associating them with the “Grim Reaper” and thoughts of ending her life. She stated, “It‟s kind of like telling me I need to end my life right then” (p. 16). However, she nonetheless tried to make sense of her dream and eventually decided to confront the images she feared: So one day I walked up to the river and I decided to go down the stairs to the- the water, just- you know, trying to face my fear. And I walked to the water and what I seen was not my niece‟s face looking up at me. It was my own face. And- ‟cause I- see, I can‟t swim in the first place. And I don‟t know why it made me look- made me look at myself in the water. And after I had faced that fear, I was okay. I didn‟t have the dream no more (p. 15- 16). The images in Marcia‟s dream seemed to force her to confront some of the intense feelings she often tried to avoid, such as the urge to end her life. Interestingly, once Marcia acknowledged these feelings and images (“faced that fear,” p.16) she no longer had the dream. In

77 addition, facing her fear apparently helped her resolve her desire to end her life at that time. In Marcia‟s own words, “When I went down to the river and seen that picture, and I- I thought, „Uh-uh.‟ I am not ready for something like that” (p. 16). At various points in her life, Marcia experienced auditory and visual hallucinations that also appeared to reflect what I called the voice of aggression. She recalled first experiencing hallucinations in her mid-30s, around the time she first began counseling, stating, “When I first started counseling and I first seen a doctor I had a situation where I seen this little boy… and his- it- I guess it was his little sister” (p. 20). Marcia said that she decided to tell her psychiatrist about the two children she saw, which apparently angered them. He said, „Can you get ‟em to talk to me?‟ I said, „No.‟ He said, „Why?‟ I said, „‟Cause they don‟t like you.‟ (Laughing) It was kind of funny when I talk about it now, but um… he said, „They don‟t?‟ I said, „No, ‟cause they got mad at me ‟cause I told you about ‟em the other day.‟ He said, „Oh…‟” (p. 20). Marcia‟s description of the children she saw, and their dislike of her psychiatrist, suggested that, perhaps, these images were speaking in a way that Marcia herself was unable to do. Although her dominant narrative left little room for her to express dislike for her doctor, the voice of aggression seemed to allow for feelings of anger and dissent. At times, however, Marcia‟s hallucinations were terrifying. For example, around three or four years prior to our conversation, Marcia became very frightened by visual hallucinations she experienced during one of her hospitalizations. I drew a picture of this little- this young guy who was all- dressed all in black and he had a bl- he had a black shirt, black pants, black shoes, and a black baseball cap on. And I could see his shadow on my wall, as if I‟m looking at you right now. And I went in my room to lay down, and I could have swore I seen him run behind the garbage b- garbage can in the bathroom” (p. 21). In this situation, Marcia seemed to access an image that she experienced as very threatening. In addition, some of her auditory hallucinations brought violent messages, such as the “growly- grouchy” (p.18) male voice mentioned in the content poem discussed in the previous section. Marcia explained that the male voice she heard at the time, “was telling me to kill each member of my family… and to bury ‟em in the backyard just to see what it was like killing somebody. And that scared- that really scared me” (p. 18). Occasionally, Marcia continued to experience hallucinations, although it had been several years since they involved violent or aggressive content. She explained, “Every once in a while I‟ll… I can see things, like on the wall… and I hear things and smell things that are not there” (p. 19). Marcia said that her most recent hallucinatory experience involved briefly hearing voices around 1-2 months before our conversation. She explained, “It sounded like somebody calling my name and telling me to do something, but nothing (violent) like what I just told you” (p. 19). At the time of our conversation, the voice of aggression seemed to play a diminished role in Marcia‟s life, perhaps because of the amount of medication she was on and/or increased stability in her social support and family relationships.

Synthesis Thus far, I have described multiple readings of my conversation with Marcia, and talked about how they have helped me understand different aspects of her multi-layered narrative. Marcia‟s story contained themes of early childhood trauma, invalidation of her voice, and disconnection from her past. She described her sense of resilience that gradually helped her feel

78 more empowered and express her voice to other people. She also wove voices of silence and aggression into her story, both of which seemed to influence her ability to feel empowered and make her own decisions. In the present section, I have discussed Marcia‟s narrative in the context of my initial research questions regarding stigma, discrimination, and empowerment in the mental health system. In addition, I have included Marcia‟s specific suggestions of how the mental health system can better meet the needs of the people it serves and address how mental health professionals can engage people around these issues in a more collaborative and empowering manner.

Stigma and Discrimination As mentioned previously, Marcia offered very little criticism of the mental health system, and she denied having any experiences of mental health professionals treating her ways that were overtly stigmatizing or discriminatory. Instead, Marcia spoke more about feeling stigmatized in public settings. For example, she explained that when she and her niece went to the rental office at her apartment complex to sign her lease, the woman they discussed the lease with ignored Marcia at times, talking to her niece instead (despite the fact that Marcia was the head of the household). As with the first time she met her psychiatrist, Marcia felt like she was being talked at by the woman, rather than talked to (“The lady at the office looks at me, but she‟s like looking through me,” p. 27). Marcia explained that this situation left her feeling judged because of her psychological difficulties. She particularly resented the woman‟s assumption that Marcia lacked understanding, even though she had no trouble comprehending what the woman said. She added that when others have treated her as if she did not understand them, she has felt like they viewed her as beneath them (“Don‟t try to act above me, ‟cause I know what I‟m talking about,” p. 27). Marcia described several other similar experiences of people stigmatizing her because of her psychological difficulties. She explained: Somebody looked at me like that and- and takes a step backwards, like, „I don‟t want to be around you; I might catch what you have.‟ You can‟t catch a mental illness from somebody. I don‟t like being judged because I have that (p.26). Marcia expressed her desire for others to try to understand what she was going through, rather than making assumptions about her based on stigmatizing views (e.g., the idea that you can “catch a mental illness”). In addition, she talked about wanting others to understand that she was not “mentally retarded” and that her condition was treatable (p. 26). At the same time, Marcia also expressed some level of understanding of people who held stigmatizing views, as she recalled times when she was judgmental of others. For example, she described initially feeling very judgmental of the people who attended the social club she was a member of (“I didn‟t think I was ever gonna participate here… or have anything to do with anybody here,” p. 35). Marcia explained that, at the time, her assumptions about the people at the club prevented her from getting to know them better: I was judging people or afraid- I was afraid that… I wasn‟t gonna like ‟em or they wasn‟t gonna like me. I didn‟t know that until I got to talk to ‟em that I was wrong. People do, you know, take to you. And it turned out to be a pretty good thing. Real good thing (p. 35). Occasionally, when others judged Marcia negatively, they also treated her in a discriminatory manner, for example, by ignoring her or treating her like a child. She talked about how others sometimes “look at you as if you‟re not worth talking to” (p. 25), which has led her to “feel inferior” (p. 29). For the most part, the discrimination she experienced was not

79 particularly severe, although it seemed to occur in subtle ways. In the aforementioned situation with the woman from her apartment complex, the woman did not deny Marcia any rights or services because of having a psychiatric diagnosis. However, the woman treated her as if she could not make her own decisions. Marcia mentioned that she could relate to people who experience discrimination because of their race, noting that at times the way she was treated felt similar to this type of discrimination. The social club Marcia attended helped her establish relationships with people who did not discriminate against her (“I got friends, but nothing like these here… that understand,” p. 25). She explained that everyone who attended the club had a psychiatric diagnosis, and therefore they understood each other‟s struggles. Marcia added, “We all come here to talk with each other, ‟cause here they don‟t discriminate… they don‟t judge us here like the outside world does…we all stick together” (p. 25). Marcia also found it helpful that the counselors who worked at the social club treated her and the other members with respect. She explained, “You know, they don‟t hold one above the other. We‟re all treated the same… And we‟re really lucky to have ‟em.” (p. 25).

Empowerment and Disempowerment Marcia only mentioned one instance of feeling disempowered by a mental health professional, occurring in her first interaction with a psychiatrist. As mentioned earlier, Marcia felt like he talked at her, rather than talking to her and trying to get to know her. At the time, their interaction left Marcia feeling like her psychiatrist was “just wanting to put you on every kind of pill there possibly is, without finding out if you really need it” (p.38). She added, “It took me some time to get to really know him to understand that he was actually trying to help” (p. 38). Although Marcia denied that there was actually anything wrong with the way her psychiatrist treated her at the time, she also stated that her initial interaction with the psychiatrist was indeed frightening for her. She explained, “I refused to go back. That‟s how scared I was of him… I had the arms of the chairs- I had my hands gripped like this (clenches fists)… my knuckles turned white” (p. 38). Marcia‟s description of her response to first meeting the psychiatrist seemed to suggest that her fear of how he might have viewed her and treated her made it difficult for her to interact with him. In fact, she attributed some of her problems with him to being so scared that she was unable to even look at him (“I hadn‟t had my eyes opened all the way to see that he was actually talking to me,” p. 38). In order for Marcia to listen to the psychiatrist‟s treatment recommendations, she needed to trust that he would be understanding toward her and respectful of her viewpoint. Part of what allowed her to feel more comfortable was feeling that she had a say in the course of her own treatment. Through my interaction with Marcia, I felt uncertain about how much of a say Marcia actually had in her treatment. Although she overcame her initial fear and seemed to trust her psychiatrist and the other professionals she worked with, she also seemed frustrated about not having much choice regarding the number of medications she took. Marcia touched on several examples of feeling empowered through her relationships with mental health professionals. Most notably, she highlighted the relationship she had with her first counselor, as this was perhaps the first time she felt she could openly express her feelings about her past (as well as explore why she felt like she did). Marcia also emphasized the importance of feeling that she was in charge of making her own decisions, even if it meant disagreeing with others or saying “no.” In therapy, she was able to examine the guilt that she felt whenever she expressed disagreement with others, explaining, “They got me to where now I don‟t feel guilty if

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I need to say „no‟… my counselor telling me I had the right” (p. 30). She elaborated on this empowering message by stating that her counselors told her, “Don‟t let nothing hold you back. If you got something to say, say it. Be it negative or positive, you got a right to say it.” (p. 30) Marcia was encouraged to speak out even if it meant disagreeing with her treatment providers, as they told her that they would take her feedback seriously. She seemed to value the fact that she was encouraged to speak up by her counselor. In her own words, “I felt good that somebody like that told me it was okay for me to speak up” (p. 31). On a related note, in addition to speaking up for herself, Marcia became more confident in her ability to speak out in defense of other people. She explained, “If I see somebody else getting hurt and somebody else doing the hurting on that person that shouldn‟t be doing it, I will voice my opinion then, even though it‟s not my place to say something to ‟em” (p. 32). Her ability to express her opinion in such situations seemed to allow her to take on a mediator or leadership role at times. She stated, “If I feel the need in order to get ‟em- get the two to talking again or something like that I will voice my opinion then” (p. 32). Marcia attributed her ability to express herself in such a manner directly to the social club she participated in and the counseling she received, stating, “That‟s how the system has helped me a lot… able to speak out” (p. 33). In addition, she joined other mental health consumers in her area to work toward political change regarding funding for mental health care. For example, she disseminated information to people in the area encouraging them to vote for upcoming mental health levies. Overall, Marcia said she felt more comfortable talking to other people, as she no longer felt that she was stuck in a “shell” (“I broke the shell,” p. 36).

Mental Health Reform When asked about how the mental health system could better meet the needs of the people it serves, Marcia made several simple recommendations that seemed consistent with her own treatment experiences. Her main recommendation was for increased access to services, as she stated, “Get more help available to the people who need it now, that doesn‟t have a counselor or a doctor to see” (p. 41). She touched on the need for increased funding and hiring more counselors to deliver services to people who needed them (“I know they get crowded. They get overwhelmed,” p. 41). This recommendation was consistent with Marcia‟s efforts to get people to vote for the local mental health levies to generate funding for services. It also seemed to reflect the gratitude she expressed about being able to receive mental health services. Clearly, she wanted others to have the same opportunities for treatment that she had in the mental health system. Another one of Marcia‟s recommendations (this one related specifically to empowerment), was that mental health professionals should focus on helping people “stand up for themselves and talk when they need to” (p. 42). She viewed this issue as important for people receiving mental health services, “so that their voice is allowed to be heard, just like anybody else‟s” (p. 42). Marcia seemed to value the help she received with finding her own voice and becoming more comfortable expressing herself. Interestingly, despite the fact that she dealt with depression, suicidal ideation, and hallucinations throughout much of her life, it was the help she received with the relational issues of voice and empowerment that seemed to be most significant to her. Finally, when asked about how mental health professionals might help reduce stigma and discrimination, she recommended providing education to people, stating, “Let everybody know that… mental health people are just like everybody else” (p. 42). She specifically suggested that

81 mental health professionals should inform the public that people diagnosed with mental disorders are different from people who are mentally retarded or developmentally delayed. These recommendations again seemed to come from her own experiences of being viewed as someone of low intellectual functioning and feeling that these views contributed to her being treated like a child. In addition to her suggestions about education, Marcia touched on the importance of people taking the time to listen to her and get to know her, so that they can see her as more than just a mental disorder. In her own words, “I want to be respected with what‟s here (she gestures toward her chest) and what‟s up here (she points to her head), not what (disorder) I have” (p. 26). She added that, if people would just “take the time to talk with a person with a mental problem, they‟d find a whole different person. But they don‟t do that. They‟d rather judge than uh, talk” (p. 26-27).

Follow-up Contacts I had no follow-up contacts with Marcia after our initial conversation. Although we exchanged contact information, I was unable to contact her for the follow-up portion of this project. Given the length of time between my initial conversations with participants and follow- up contact attempts (approximately 3 years), it is possible that Marcia‟s contact information had changed. Unlike the other two participants, Marcia did not have access to email when we met, which also limited my attempts to contact her. Therefore, her participation in this study was more limited than that of the other two participants.

Concluding Remarks Overall, Marcia seemed to have a more positive view of the mental health system than the other participants I spoke to in this project. Although she continued to experience hallucinations, suicidal thoughts, and aggressive impulses at the time of our conversation, she described her treatment as helpful. In counseling, Marcia was able to talk about the abuse she had experienced, and no longer blamed herself for what had happened to her. She also learned to value herself, voice her opinion, and feel like she was in charge of making her own decisions. These skills seemed to help Marcia feel more comfortable in social settings and establish meaningful relationships with others. She described her counselors as kind, understanding, and encouraging. Despite her initial trepidation about seeing a psychiatrist, Marcia also described her inpatient and outpatient psychiatric experiences as helpful. She seemed to value having the option of going to the hospital if she was feeling suicidal, and stated that the medication she took helped her to manage her symptoms. In addition, Marcia spoke very highly of the other supports she found through the local mental health system, including groups, her social club, and other social activities. These supports were invaluable to Marcia, and seemed to bring increased meaning and fulfillment to her life. Several alternative themes appeared in contrast to Marcia‟s dominant narrative of overcoming trauma and finding her voice and a meaningful life with the help of the mental health system. For example, she expressed some frustration with the amount of medication she took. Whereas other aspects of her treatment seemed to increase her sense of empowerment and control over her life, she expressed a sense of helplessness about needing to rely so heavily upon her medication. Statements such as, “I know he‟s gonna put me on another pill when I tell him how I been feeling” (p. 40), suggested that she had little opportunity to express her voice with her regarding this aspect of her treatment.

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Some might argue that Marcia should not have had a say regarding the medication she took, especially if the medication helped her manage her symptoms. Even if the medication was helping with her symptoms, the apparent lack of dialogue in her relationship with her psychiatrist seemed to contradict many of the positive messages she received in her other interactions with the mental health system (e.g., the idea that she should express herself and speak up when she has a problem). Further, the dynamic of her relationship with her psychiatrist and Marcia‟s larger pattern of rarely expressing criticism or disagreement with mental health providers suggested that, while the mental health system helped Marcia learn to express herself, it also might have subtly perpetuated her silence. Despite her lack of criticism toward the mental health system, some of Marcia‟s general suggestions about how she wanted to be treated seemed relevant for mental health professionals. For example, her point about the importance of taking the time to get to know people dealing with mental health issues was just as relevant to mental health providers as anyone else. It was clear from her accounts that her most helpful experiences in the mental health system were with professionals who treated her with respect, took her opinions seriously, and viewed her as a human being, not as a diagnosis. It was my goal to give Marcia an opportunity to tell her story and share her expertise about the mental health system in our conversation. I believe that my approach was consistent with Marcia‟s desire for people to take the time to get to know her, rather than simply judging her. As I reflected on my initial concerns about whether Marcia would be an appropriate participant for my study, I realized that I prematurely judged her. By taking the time to talk to Marcia (as she suggested), I was able to understand the depth of her experience and perspective in more nuanced way that I had initially anticipated.

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Chapter 6: Discussion

Summary In the present study, I spoke to three Caucasian women in their 40s about their experiences receiving mental health services, to learn about what they did and did not find helpful. Each participant presented a unique, multi-faceted narrative regarding her experiences of the mental health system. Sally told a story of maintaining resilience in the face of ongoing disempowerment. Sally‟s experiences of disempowerment involved having her choices repeatedly invalidated by a mental health system that forced her to comply with specific forms of “treatment,” namely psychotropic medication, for paranoid schizophrenia. Elsie‟s narrative also dealt with invalidation, but with less of a focus on the invalidation of involuntary treatment. Elsie has felt disempowered and “defective” for years, as she has dealt with ongoing memory loss and recovery from the trauma of excessive ECT. Although she received ECT willingly in hopes of reducing her depression, in hindsight she realized that she was not fully aware of the potential effects of repeated ECT. Finally, Marcia‟s narrative is one of turning to the mental health system to help her find her voice and deal with the effects of childhood sexual abuse, as well as the debilitating symptoms of depression and psychosis. Three overarching messages emerged through my dialogue with participants in this study that have been lacking in previous studies of mental health reform. The first of these messages was that there is a need for people who utilize mental health services to tell their stories and have a voice in the mental health system. Each person I spoke to in this study had a unique story that she was willing to share with me. At times, participants even expressed their appreciation for the opportunity to share their stories. For example, Elsie sent me an email after our final conversation to say that she had found our conversations both empowering and motivating, while Marcia expressed enthusiasm about the idea that professionals could learn from what she had to say. As mentioned earlier, the New Freedom Commission (2003) did not include any direct quotes from mental health consumers or survivors in their report on mental health reform. In addition, they made many recommendations about how to improve the mental health system, but did not talk about the importance of people who utilize mental health services having their voices heard and engaging in dialogue about mental health reform with mental health professionals. The present study focused on the voices of three people who were receiving mental health services, and modeled a way that mental health professionals can engage in dialogue with people in the mental health system and listen to what they have to say. The second message that came out of this study was that mental health professionals need to be more aware of how inner dialogue plays a role in a person‟s experience of the mental health system. For example, when Elsie commented that she felt the DSM was overused, she qualified her comments with the statement, “I‟m sounding terrible” (p. 88). This brief statement seemed to reflect a snippet of inner dialogue between the silence of her dominant narrative, and her desire to speak out, which I described as the contrapuntal “voice of action.” I believe it is important for mental health professionals to recognize this type of inner dialogue in our clients and patients so we can discuss it with them as part of treatment. Attending to inner dialogue can provide valuable information about a person‟s sense of identity, ambivalence, and voice. It can also help us understand how a person views his or her treatment options and allow us to assist the person with making the best choice for them. More specifically, we need to attend to how we might be validating or invalidating certain aspects of a person‟s narrative through our interactions with the person as a

84 client/patient/consumer. By examining the inner dialogue of participants in this study, it became apparent that this type of dialogue influenced how they experienced the mental health system. However, it also seemed that their experiences in the mental health system influenced their inner dialogue. For example, Elsie‟s dominant narrative of defectiveness, as well as the contrapuntal voice of action, both influenced and were influenced by her experiences in the mental health system. Her experiences in the mental health system seemed to replay some of the relationship dynamics she experienced in her family, thus reiterating her feelings of defectiveness, as well as her anger about how she was treated. At the same time, when mental health professionals dismissed her anger about her treatment, this both added to Elsie‟s desire to speak out, and led her to feel that she should silence her anger. Mental health reform can only be successful when professionals learn to acknowledge the complex relational impact our “interventions” can have on the people we work with. This point has become increasingly overlooked by a mental health system that has been moving toward a manualized, “one size fits all” approach to treatment. The third important message of this study was that it is essential for mental health professionals to examine our biases, and be aware of how our language reflects these biases. Through my follow-up contacts with Sally, I learned that, even in my attempts to use empowering and respectful language with participants, my biases unwittingly led me to talk about some of Sally‟s experiences in a way that she found dismissing. Specifically, she pointed out that I wrote about her first hospitalization in a manner that did not accurately reflect her experience of this event. Most notably, she pointed out that I wrote she was “admitted” to the hospital, rather than explaining in more detail that she was “seized” and taken into a back room. She also pointed out that my language seemed to imply that she experienced more ambivalence toward the use of psychiatric medication than she actually did. By listening to Sally‟s feedback and reflecting on her comments, I was able to recognize how my professional assumptions and jargon (e.g., “admit”) might color my perception of the mental health system and limit my ability to treat people in a way that is validating and empowering. My interactions with Sally also offer an example of how mental health professionals can engage in dialogue with, and learn from, people who receive services. In addition to the three general messages that came out of the present study, I also learned some specific information about participants‟ experiences of stigma, discrimination, and empowerment. With regard to stigma, the point that came up most consistently for all three participants was that they frequently found labels to be harmful and discussed labeling as a significant form of stigma in their lives. Participants seemed to identify labels bestowed by mental health professionals as being the most difficult labels to overcome, mainly because they carry the weight of professional opinion. For example, Sally expounded on the effect that professionals labeling her “seriously mentally ill,” “isolative,” and “incompetent to make decisions” had on her treatment. Not only did she find these labels to be inconsistent with her own experience, she also expressed concern that they would influence how her co-workers, family members, and future treatment providers viewed her. Both of the other participants talked about the impact of labels in terms of people holding negative beliefs that they associate with terms such as “mental illness” or “schizophrenia.” I took away from participants‟ comments about labeling, the message that mental health professionals need to learn to talk about people in ways that extend beyond just their diagnoses or deficits, perhaps by drawing on the strengths- oriented perspectives originally offered by humanistic psychology, and more recently highlighted by the positive psychology movement. Although all labels have the potential to become stigmatizing, it is important to examine the context we put them in and the implications

85 they carry. For example, talking about a disease model of “mental illness” carries implications regarding issues of responsibility and free will that we must be able to talk about in order to evaluate the impact of using such a model. Each participant also described how the stigma of such labeling has led to discriminatory behavior from others. One way that they experienced discrimination was through feeling silenced with regard to talking about their own mental health issues. For example, Elsie described receiving the explicit message, “don‟t talk about it,” from her family and other people in her life. This message led her to feel that she could not discuss her problems with anyone in her life, or even bring up her psychological limitations to negotiate work accommodations with potential employers. The other two participants also discussed the issue of silence in the context of not feeling heard by family members, mental health providers, and/or other professionals. Participants also talked about other people discounting their opinions, a problem that relates to the issue of silence. For example, Marcia explained that when others viewed her as “mentally retarded” or childlike, they ignored and discounted her because they assumed she lacked enough understanding to make her own decisions. Similarly, she described feeling that others have talked down to her and avoided her at times, making it difficult for her to connect with people outside of her social club. Elsie also felt that others discounted her because of her psychological difficulties. For example, she talked about how some of her family members blamed her for her depressive and manic symptoms. In addition, treatment providers and lawyers were unwilling to help her speak out against the doctor who administered the ECT that she experienced as traumatic. Because of her lack of success in this area, Elsie felt that people discriminated against her, leaving her powerless to speak out against her past treatment. The issue of power was particularly significant in Sally‟s descriptions of discrimination in the mental health system. For example, she spoke about the trauma of being forced to take medication and having her right to make choices regarding her own treatment taken away. These experiences involved professionals deeming her opinion irrelevant and denying her basic right to choose how she wanted to live. Sally felt oppressed by a mental health system that utilized its power to discriminate against her in these ways because of her diagnosis, even though she posed no threat to harm herself or others. Sally‟s narrative illustrated how discrimination by mental health professionals can be especially damaging, as their decisions often carry the weight of legal consequences, such as forced treatment. When participants were able to express their voices and not have their views discounted by others, they felt empowered. Marcia experienced her treatment as predominantly helpful and empowering largely because it helped her learn to express her voice. For example, she was able to talk about her feelings regarding past trauma, be assertive with others, and tell people when she disagreed with them. One key aspect of Marcia‟s sense of empowerment was that she could even be assertive with her treatment providers and not have her views discounted by them. Alternatively, Sally and Elsie rarely felt that they could express their voices to their treatment providers and have their opinions taken seriously. For example, Elsie brought up the fact that her voice was squelched repeatedly, such that her complaints about the treatment she received, were viewed as evidence that she was delusional and incompetent to make her own treatment choices. In addition, when she received ECT, she felt that other people minimized her concerns about the memory loss she experienced. Participants also discussed the issue of acceptance as an important aspect of feeling empowered. All three participants expressed a desire for mental health providers and other people in their lives to be accepting of them. For example, Sally felt empowered by therapists

86 who accepted her feelings and views as valid, even when they challenged her to see things from another perspective. Such a position of acceptance enabled Sally to better understand her feelings and feel more empowered to make decisions in her life. Similarly, Marcia felt accepted by her treatment providers and, especially, other consumers at her social club, who she felt understood best what she was going through. On the other hand, Elsie‟s experiences of having her views discounted left her feeling unaccepted by many people in her life. Finally, participants brought up the issue of choice as another significant aspect of empowerment. Each participant talked about feeling empowered when she was able to make her own decisions regarding treatment and/or feeling disempowered when she was not able to do so. For example, Sally very clearly stated that her experiences in treatment only felt empowering when was able to choose the type of treatment she received. In addition, she stressed the importance of being able to choose a counselor who she felt was a good fit for her. Similarly, Marcia talked about feeling empowered by counseling that helped her make choices regarding treatment and other areas of her life. On the other hand, Sally and Elsie both spoke about forced treatment as being incredibly disempowering. Sally experienced her initial involuntary hospitalization as very traumatic, and subsequent forced treatments as violating her rights as a human being. Elsie described how being involuntary hospitalized felt unhelpful and made it difficult for her to trust the mental health system and be honest with her treatment providers. In addition, the issue of choice played a significant role in the ECT she received. Despite the fact that Elsie was given a choice about whether to receive ECT, she did not feel like she was able to make an informed choice, primarily because she was not fully aware of the extent of the potential side effects of the treatment.

Revisiting the Stigma, Discrimination, and Empowerment Literature

Stigma and Discrimination In the present study, participants discussed several aspects of stigma and discrimination that were consistent with some of the literature I reviewed. Only one of the three participants explicitly talked about feeling stigmatized by the mental health system as a central part of her narrative. However, all three discussed how stigma and discrimination were part of their daily lives and interactions with other people. Marcia‟s description of people viewing her as “mentally retarded” fits with Corrigan and Penn‟s (1999) definition of stigma as consisting of unwarranted or over-generalized stereotypes. All three participants also discussed the discriminatory behavioral responses (Corrigan & Kleinlein, 2005) that came with such stereotypes. For example, they brought up examples of having their opinions discounted because of their mental health labels. These results supported Sayce‟s (2000) claim that it is common for people struggling with mental health issues to have their opinions discounted as invalid. This type of discrimination also speaks to the powerful impact that psychiatric diagnoses can have on people‟s lives. Participants in this study offered several suggestions for reducing stigma that were consistent with the recommendations made by the Office of the Surgeon General (1999) and the New Freedom Commission (2003). Specifically, both Marcia and Elsie talked about the importance of educating the public about mental health issues. Marcia also stressed the importance of sending the message that people should not judge her because she has a problem, but rather, they should try to get to know her. In addition, Marcia talked about the importance of consumer activism. For example, she often worked with the local mental health system to

87 encourage people to support funding for mental health services. Marcia‟s activism fits with Corrigan and Penn‟s (1999) claims about the importance of consumers taking part in educating the public about mental health issues. Corrigan and Penn (1999) also discussed how having direct contact with people diagnosed with mental disorders can help to reduce stigma. However, silence and power inequality seem to perpetuate stigma, regardless of whether such direct contact is occurring. All three participants talked about feeling silenced at various times in their lives; and while the discrimination literature does not explicitly discuss silence as a form of discrimination, it appeared to play a significant role in participants‟ experiences of discrimination. For example, when participants did not feel that they could talk about their mental health difficulties to others, it seemed to perpetuate social exclusion and, at times, denial of basic rights, two aspects of discrimination discussed by Sayce (2000). At one point, Elsie talked about having difficulty finding employment due to her mental health difficulties. While Corrigan and Kleinlein (2005) discussed employment discrimination against people diagnosed with mental disorders, they did not touch on the potential role of silence in such discrimination. Elsie described how the issue of silence affected her search for employment, in that she received professional advice to avoid sharing her mental health background with potential employers to avoid the type of discrimination described by Corrigan and Kleinlein. As a result, Elsie did not feel that she could find a job that would offer her support with regard to her mental health issues. Both Sally and Elsie specifically talked about feeling discriminated against by mental health professionals. Sally experienced discrimination from her mental health providers through forced treatment and harmful psychiatric labels that served to justify the denial of her choice regarding treatment. Sally‟s experiences in the mental health system are consistent with Chamberlain‟s (1995) description of how professionals often diagnose anger toward the mental health system as delusional. Both Sally and Elsie described feeling discriminated against through their involuntary hospitalizations, which supports Leete‟s (1991) claim that patients feel discriminated against when mental health professionals label them as incapable of making their own treatment decisions. This finding is significant, as people‟s feelings about receiving involuntary services can significantly affect their willingness to seek services in the future, as was the case with Elsie. As mentioned earlier, Campbell (1989) found that 55% of consumers who had experienced an involuntary hospitalization reported that they had later avoided mental health services due to fear of another involuntary hospitalization. Marcia offered an alternative to Leete‟s (1991) perspective, in that she found her involuntary hospitalizations helpful because they served to keep her safe when she was feeling symptomatic. Marcia‟s positive view of her hospitalizations reflected her more positive experience of the mental health system in general. This finding raised the question of why Marcia‟s view of the mental health system was more positive than both Sally‟s and Elsie‟s views. On the surface, each participant appeared to have similar mental health experiences (e.g., involuntary hospitalizations, various psychiatric medications, counseling), with the notable exception of Elsie‟s ECT. One possible reason Marcia‟s more positive view of her treatment might be the way that services were delivered, or, in other words, not just how professionals treated her as a patient, but how they treated her as a person. For example, Marcia stated that her counselors allowed her to talk about her feelings in therapy and helped her feel more comfortable expressing her voice with others. She experienced these aspects of counseling as positive in that they helped relieve some of the emotional burden she felt and helped her develop a social support network. When I asked

88 what helped her make these changes, Marcia did not talk about the medication she was on, the coping skills she learned, or even the traumatic memories she worked through in therapy. Rather, Marcia talked about how her counselors understood her, were kind toward her, and were willing to help out. These comments seemed to speak to the way professionals interacted with her, not necessarily the treatment modality they utilized, although the things she found helpful are consistent with the basic tenets of humanistic psychotherapy, such as empathic understanding. Another possibility is that participants‟ views of the mental health system differed because they had different needs that the system was not always able to meet. For example, Sally wanted to engage in voluntary treatment, as she experienced involuntary treatment as invalidating, unhelpful, and, at times, traumatic. On the other hand, Marcia said that her involuntary hospitalizations were helpful, in that they allowed her to feel safe. Therefore, although they were each administered involuntary treatments, they construed these treatments in very different ways. This point carries significant research implications for studying treatment outcomes. Rather than empirically validating the effectiveness of a particular treatment modality for a group of people, such as those labeled with a particular diagnosis, professionals may be better off trying to understand people‟s individual needs and how they construe their own recovery.

Empowerment All three women in this study touched on the importance of feeling empowered by having access to the rights and responsibilities shared by other citizens, an issue discussed by Sayce (2000). The themes of choice, acceptance, and voice, brought up by the three participants also fit with Linhorst and Eckert‟s (2003) definition of empowerment as a person‟s ability to act on his or her own behalf. These themes incorporated other definitions as well. For example, several authors described the concept of “voice” as an important element of empowerment (Clark & Krupa, 2002; Fitzsimmons & Fuller, 2002). In addition, all three participants talked about the need to have certain external conditions (as defined by Linhorst & Eckert, 2003) fulfilled in order for them to feel more empowered. For example, when Sally, Elsie, and Marcia have had access to social support, employment, and mental health providers that helped them feel accepted and make their own choices, they have generally been better able to express their voices, act on their own behalf, and work toward positive change. When these factors have not been present, they have felt powerless to improve their life situations. The idea of external conditions of empowerment carries several concrete implications for public policy that could significantly improve the lives of people in the mental health system. For example, people in the mental health system could benefit from having a sense of community with other people who are dealing with similar problems. Marcia spoke extensively about the importance of her social club, a program that a local mental health agency offered. To the contrary, both Sally and Elsie talked about feeling isolated, as their contact with the mental health system did not involve this type of social support. Elsie‟s negative experiences seeking assistance with finding employment also spoke to the need for employment services tailored to the needs of people in the mental health system. These examples suggest that attention to basic human needs, such as social and financial support, is necessary if we want to help people feel empowered in their lives. According to Linhorst and Eckert (2003), along with the rest of society, it is partially the responsibility of mental health professionals to help promote the inclusion, equality, and empowerment of people struggling with mental health difficulties. However, Elsie and Sally‟s

89 narratives were consistent with Chamberlain‟s (1995) claim that instead of promoting empowerment, the mental health system stifles it by relying on coercive treatment methods. Elsie and Sally both described experiences that recalled Leete‟s (1991) point that people in the mental health system merely have an “illusion of citizenship,” and they have felt that the mental health system has stifled their voices. On the other hand, Marcia felt that the treatment she received allowed her to play an active role in her community, for example, by gaining social support and lobbying for mental health funding. Marcia explained that her treatment helped her gain a sense of voice, in that she could express her opinion, both with her treatment providers and with other people in her life. These results are consistent with Everett‟s (2000) study of members of the psychiatric survivor movement, who emphasized the importance of empathy and allowing consumers/survivors to decide what they need rather than forcing treatment decisions upon them. Finally, Sally‟s discussion of power in the mental health system brought up an obstacle to empowerment pointed out by Everett (2000). Specifically, Everett talked about the danger of re- enacting abusive relationship patterns that may have contributed to a person‟s current psychological distress. Although members of the psychiatric survivor movement have brought up this issue, the mainstream literature on mental health reform (e.g., The New Freedom Commission, 2003) and empowerment (e.g., Clark & Krupa, 2002) does not discuss it. For Sally and Elsie, the mental health system re-enacted problematic family dynamics involving power and coercion, which seemed to contribute to their dissatisfaction with the services they received. However, Marcia mentioned that her treatment providers were empathic toward her and had helped her address her trauma history since she first entered treatment. When relationships with mental health providers involve coercion, there is a significant danger of these relationships being more harmful than helpful.

Implications for Mental Health Reform One of my main objectives in the present study was to learn from participants how we can reform the mental health system to better meet their needs. The first, and most basic, message offered by the participants in this study was that mental health professionals needed to listen better to people who utilize their services. Since the concept of empowerment closely relates to the issue of voice, it is our job as mental health professionals to listen carefully and allow clients, consumers, patients, and survivors to express their voices. Sally, Elsie, and Marcia highlighted this message in several ways. For example, Sally emphasized the importance of a having a “human connection” in her mental health treatment, in the form of treatment providers who were accepting and respectful of her feelings and experience. Similarly, Marcia highlighted the importance of feeling respected by her counselors and other professionals. Marcia also stated that she wanted others to try to understand what she was going through, rather than making assumptions about her based on her diagnosis, stigmatizing beliefs, or misinformation. Although mental health professionals might have an extensive understanding of mental health issues, we still carry biases and make assumptions based on these biases. If we are not aware of them, these assumptions can prevent us from listening carefully and understanding the experience of people we work with. As mentioned earlier, when I began thinking about Sally in terms of a DSM diagnosis, I was no longer attending to her words and experiences. Instead, I was making assumptions about her based on professional biases ingrained in the mainstream study of psychology in the United States. Unfortunately some of the biases that many mental health professionals rely upon to do our jobs are also limiting our ability to understand what our clients/patients are going through.

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As mental health professionals, we can combat stigma and discrimination by modeling the process of treating people who are dealing with psychological difficulties respectfully. However, as mentioned earlier, this process needs to involve examining our biases and making a commitment to listening to people who utilize mental health services. When we are listening carefully, we can then engage in an open dialogue with people, without having to rely on coercive methods. Both Elsie and Sally talked about the importance of communication in their interactions with mental health professionals. Sally pointed out that it has been helpful to receive feedback from professionals, but only in the context of open dialogue. Further, Elsie recommended that professionals provide clear information to people receiving services, and perhaps their families as well, about their rights, treatment options, and potential side effects of treatment. Both of these suggestions reflected participants‟ desire for mental health professionals to be honest with them and engage in a mutually respectful dialogue. However, as long as we continue to reify our professional biases and rely on methods of coercion to deal with people who are “treatment noncompliant,” honest dialogue will not be possible. The issue of power exists in any relationship; and, when power is unequal, it is more difficult for people to engage in open dialogue. Therefore, another implication of the present study is that the mental health system must allow for shared power between mental health professionals and people seeking mental health services. Of course, by nature, a doctor-patient or therapist-client relationship will never completely be equal, as one person is relying on the other for help. However, policies, practices, and laws that widen this discrepancy in power hinder the process of dialogue. When mental health professionals impose forced “treatments” upon people, they shut down dialogue and take away any semblance of a collaborative relationship. Therefore, we need to consider very seriously the consequences of utilizing our power to take away people‟s rights by forcing a particular form of treatment upon them. Both Sally and Elsie experienced their involuntary hospitalizations as invalidating and unhelpful, while Marcia found them helpful. These differences suggest that we may need future research to help determine when involuntary treatment is helpful vs. harmful. Such research could help mental health professionals weigh the potential harm that forced treatment might cause to a client/patient and determine whether the benefits outweigh the risks. Both Sally and Elsie spoke out against forced treatment and stated that taking away a person‟s choice of treatment is unacceptable, unless it is to protect the safety of others. Sally specifically talked about experiencing forced treatment as an invalidation of her lifestyle choices, such as her decision not to rely on medication to manage her symptoms. Therefore, Sally experienced the mental health system as working against her rather than for her. As mentioned by Everett (2000), members of the psychiatric survivor movement believe that the mental health system needs to allow people to decide what is best for them. Doing so would be one way of fostering a culture of shared power and responsibility. Rather than taking away a person‟s choice and communicating that we believe the person is incapable of making competent decisions, we can be open about why we believe a certain form of treatment is the best one for that person. For example, in cases of hospitalization, we need to communicate, through our words and actions, that safety is our highest priority and that we have a person‟s best interests in mind. In addition, if we do send someone to the hospital due to safety concerns, inpatient medication management should not be their only treatment option. People should have the option to create a safety plan that does not involve receiving psychiatric medication, or any formal “treatment.” For people who do not want medication or formal psychotherapy, patient-run support groups might be more

91 desirable alternative. Such a collaborative approach to treatment would communicate respect for people, and help them to make their own choices by allowing them to have options. Elsie highlighted the issue of choice when she talked about her treatment providers being overly reliant on medication and/or ECT, and not being open to alternatives. As a result, Elsie did not feel like she could seek out other options (“you‟re at their mercy,” p. 74). Elsie‟s point suggests that she would have felt more empowered to participate in her own treatment decisions if she felt that there were other options available to her. For example, I believe that long-term therapy that focuses on helping clients understand the meaning and potential causes of their symptoms at an emotional and relational level is more helpful to people than keeping them medicated, or shocking their brains. In addition, I believe that consumer or survivor led support groups and activist organizations can help people feel empowered in ways that the mental health system often cannot. To increase such alternatives to hospitalization, medication, and other mainstream treatment options, mental health professionals need to collaborate with consumer and survivor organizations. Collaborating at a systemic level not only allows consumers and survivors to have a voice in the future of the mental health system, but it could also demonstrate to individuals who are seeking services that mental health professionals are willing to engage in dialogue and shared decision-making regarding treatment. In short, it would begin to change the culture of modern mental health. Another implication of the present study is for mental health professionals to be more aware of how the professional language we use can affect our patients/clients. As mentioned earlier, each participant gave examples of how certain labels they have been given have felt stigmatizing. Because professional labels, such as psychiatric diagnoses, carry the power of professional opinion, it is important for mental health professionals to examine how the labels we use contribute to the problems of stigma and discrimination. Unfortunately, our professional labels often can be just as stigmatizing as those that are rooted in prejudice and negative stereotypes. For example, when we give someone a psychiatric diagnosis, we are reducing the person to a label that denotes his or her pathological thoughts, emotions, and behaviors. As a result, we lose the depth and complexity of the person‟s experience in favor of a biased and simplistic descriptor of how he or she is defective. Sally‟s diagnosis led to other negative labels, such as “seriously mentally ill” and “incompetent to make decisions.” One problem with these types of labels is, once they are applied, thereafter they influence how others judge the person. Sally talked about how certain labels made it difficult for people to trust her judgment and allow her to make her own treatment decisions, such as whether to take psychiatric medication. Therefore, because of these labels, mental health professionals and other people could assume they knew something about Sally without needing to take the time get to know her. If we take seriously the issue of labeling, examining our language may also require us to redefine how we view discrimination. For example, many professionals would not consider ECT as discriminatory, yet Elsie‟s “bipolar disorder” label led to her being the recipient of excessive ECT administrations that drastically hindered her ability to live a meaningful life, due to extensive memory loss. Although she agreed to this treatment for her bipolar disorder, she was not fully aware of the potential for such life-altering consequences. In addition, she felt that the legal system discriminated against her for having a psychiatric diagnosis, because she could not find a lawyer who was willing to help her speak out against the ECT she received. Similarly, Sally‟s story of enduring forced treatment, despite the fact that she was not an immediate danger to herself or others, highlighted the need for mental health professionals and policy-makers to look at how existing policies and forms of treatment may be contributing to the problems of

92 stigma and discrimination. Sally experienced the labels mentioned above (e.g., “seriously mentally ill”) as discriminatory, in that they led to her being treated unfairly. As a result, these labels had a profound effect on her life and treatment options. An examination of such professional labels is missing from much of the mainstream discussion about stigma and discrimination. For example, the description of stigma and discrimination offered in the 1999 Surgeon General‟s report on mental health does not address the potential impact of such labels. However, many professionals have challenged the mainstream mental health system‟s use of DSM diagnoses, as well as practices such as involuntary treatment (e.g., Breggin, 1991; Caplan, 1995; Honos-Webb & Leitner, 2001; Szasz, 1974). Essentially, the DSM is a professionally sanctioned system for labeling people who are in psychological distress. Given the present discussion of stigma and discrimination with regard to labeling, it would make sense to reconsider our reliance upon such a rigid categorical approach to diagnosis. As mentioned earlier, Elsie offered two recommendations regarding the use of labels that could be useful for the mental health system to utilize. She suggested that people apply labels less rigidly and that people use labels that are less stigmatizing, such as the term “disability” rather than “mental illness.” If taken seriously, Elsie‟s suggestions can help us create a professional lexicon that does not pigeonhole people and acknowledges the whole person, rather than just a person‟s deficits. For example, the term “schizophrenia” is a label that describes a specific set of behaviors and subjective experiences. However, as Szasz (1974) and others have explained, we have reified this term as a way of referring to a group of people who have a “brain disease” and can only begin to obtain a more “normal” life by taking medication. Once a group of professionals has agreed to apply this label to a person, we often dismiss any attempt to focus on aspects of the person‟s experience that deviate from “schizophrenia” as irrelevant. Further, if the person disagrees with the diagnosis or the treatment methods that accompany it, such dissent is often viewed as further “evidence” of the person‟s illness (as mentioned by Chamberlain, 1995). As long as we are binding people‟s identities to our professional labels in this manner, they will remain in a state of disempowerment.

The Use of Poetry in the Present Study Before moving into my experiences interacting with participants in the present study, I will briefly discuss what using poetry as part of my research method added to the present study. By using poetry in the present study, I intended to highlight specific aspects of participants‟ narratives in a more aesthetic manner. Specifically, I used Gilligan‟s “I poems,” as part of the Listening Guide method to highlight the subjectivity of each participant by looking at how they each spoke about themselves. In addition, I expanded the Listening Guide method to include “content poems,” so I could highlight other aspects of each participant‟s narrative that did not come up in the form of I-statements. To create these two types of poems, I alternately narrowed and broadened my field of vision to pick out pieces of text and look at them in the context of each participant‟s overarching narrative. In doing so, I needed to pay close attention to the language participants used, reflect on the significance of this language in their stories, and take an exquisite amount of care in presenting each participant‟s words. As a result, including poetry in my methodology increased my emotional understanding of participants‟ stories and the connection I felt to each participant. Therefore, in a sense, these poems are as much about what I took away from my interactions with participants as they are about the participants themselves. Drawing on the connection I felt toward participants, I tried to create poems that would help readers attend to participants‟ language, just as I had done in creating the poems. I believe

93 that presenting participants‟ words in the form of poems allowed me to share their words with readers in an emotionally evocative manner. Therefore, my discussion of poems as part of the results of this study added depth to my analysis that I hoped would help readers feel more connected to participants‟ individual stories and to the story of my collaboration with participants. For example, a reader would be able to understand that Marcia has heard voices by reading the transcript of our conversation, or my description of our conversation. However, by reading the content poem that highlighted her experience of hearing voices, I believe that a reader would be more likely to empathize with Marcia and understand what it might have been like for her to hear voices. As pointed out earlier, poetry “encourages an empathic relationship” between author and audience (Gallardo, Furman & Kulkarni, 2009, p. 291). By aiming to foster such emotional understanding through using more aesthetic research methods, I hoped to increase the potential for this study to move readers to personal and political action regarding mental health reform.

My Experience of Interacting With Participants Over the course of recruiting participants for this study, I had contact with several people who were receiving mental health services and one parent of a person who had received mental health services. In each of these interactions, I noted how willing, and, in some cases, grateful, people were to share their stories. For example, at one point I received an email from a man stating that he had been specifically looking for an opportunity to tell his story to someone. Unfortunately, due to difficult life circumstances, he was unable to participate in this study. On another occasion, I spoke to the mother of a young man who had killed himself after experiencing increased suicidal ideation while taking an anti-depressant medication. This woman talked about wanting to share her story, both with mental health professionals, and with people receiving services as a way of helping to change how professionals treat people in the mental health system. Elsie also made similar comments about wanting to help change the system by telling her story.

The Collaborative Process Overall, everyone I spoke to seemed to appreciate the collaborative nature of the present study and take seriously my invitation to take on the role of co-expert. For example, both Elsie and Sally sent me articles that they felt would help me better understand their experiences and/or their views on ECT, medication, and/or the mental health system as a whole. Another person I interviewed (who was not included in this study because of an accidental deleting of the audio recording of our conversation) shared with me various pieces she had written about her views of the mental health system and talked about wanting to educate others about the problems with the system. Although I had the least amount of contact with Marcia, perhaps in part because she did not have internet access, she also talked about wanting to educate others about issues relevant to the mental health system. Given that Marcia‟s dominant position regarding the mental health system was more consistent with the mainstream perspective, her attempts to educate others primarily involved advocating for people to support the local mental health levy. However, she still provided a number of suggestions about how to improve the mental health system. The collaborative nature of my method helped to create an invitational space where participants felt comfortable sharing their views and experiences with me. In the present study, participants were able to share their stories and expertise with someone in the mental health system willing to listen. One of my goals in the present study was to foster a sense of

94 empowerment among participants by allowing them to tell their stories. Although I did not specifically ask participants if they felt empowered by participating in this study, several aspects of my interaction with them suggest that they did to some extent. First, the amount of enthusiasm displayed by practically everyone I spoke to as part this study suggests that these people felt a need to talk to someone about their stories. As I have described, in most cases, my communication with participants extended beyond one phone conversation, as I spoke to people multiple times and/or received follow-up emails from them with further information that they thought I might find helpful. As mentioned earlier, participants talked about empowerment in terms of being able to express their voices and having people accept them for who they are. Given the willingness of participants to share their stories with me, it is clear that they experienced this study as an opportunity to express their voices in a forum that was accepting. Only Elsie specifically stated that she felt empowered by our conversations, although it is possible that the others also felt this way. My dual role as a researcher and a mental health professional seemed to offer a more balanced power dynamic than many of their other interactions with professionals. For example, the fact that I did not have a say in their treatment decisions or ongoing therapeutic relationships with them may have contributed to a sense of safety that helped participants speak openly. However, the issue of power still came up in my interactions with participants, most notably in my conversation with Elsie about labels. Elsie highlighted the gap between the power ascribed to the labels of PhD or MD (“that means you know everything”) and labels of psychiatric diagnoses. It was clear that Elsie felt this discrepancy in our interactions, as she was sometimes apologetic for speaking out against mental health professionals or the system in general. For example, at one point she qualified her critique of the mental health system with the statement, “I‟m sounding terrible.” In one of our email contacts, she even addressed me as “Mr. PhD to be.” However, Elsie also talked about how she appreciated my willingness to listen, when others have not. The importance of being treated as an equal was perhaps most apparent in Elsie‟s comments about “shit.” As mentioned earlier, she followed her discussion of professional labels by saying to me, “you take a shit every morning,” and, “everybody – even attorneys and doctors – hopefully take shits!” Elsie‟s follow-up comments about feeling empowered from our conversations may have been a result of feeling that I was willing to talk about the metaphorical “shit” in her life, but without trying to pretend I was above dealing with “shit” of my own. Clearly, participants in this study, and potential participants, expressed a strong desire to tell their stories to someone who was willing to listen. Their desire to share their stories implies a need for more opportunities for people to talk about their mental health experiences. Further, their willingness to collaborate with me in the present study suggests that people who utilize mental health services could benefit from being able to work with mental health professionals to improve the system. Such collaboration could help consumers and survivors feel more empowered and have more trust in mental health professionals. Interestingly, Marcia was the only participant who said that she already had outlets to talk about her mental health experiences in a non-judgmental setting and collaborate with professionals to improve the system. These included her social group and opportunities to encourage people to support the local mental health levy. Perhaps the fact that she has these outlets in her life is another reason that I had less contact with her than my other participants. In other words, she may have had less of a need for an opportunity to tell her story and collaborate with a professional around the issue of mental health reform.

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My Biases and Self-Reflection One useful aspect of utilizing a collaborative method such as the Listening Guide is that the method incorporated self-reflection into the research process. As mentioned earlier, it was my goal to reflect on my own reactions and biases in my interactions with participants. By reflecting on my own reactions throughout this study, I was able to maintain awareness of how my professional opinions and biases influenced my interpretations of each conversation. As mentioned earlier, I am a white male therapist, trained in clinical psychology, and working as part of the mainstream mental health system. Although I disagree with the medical model and psychiatric diagnostic system that mainstream mental health has embraced, I still speak the language of these perspectives when I am communicating with other professionals, and, at times, even with my clients. Therefore, I hold a multitude of biases that are present in everything I have written about this study. Like the participants I have been describing, my own narrative consists of contrapuntal voices that each contribute to my perspective. These voices include the voices of the mental health system, narrative psychology, hermeneutics, my family/cultural background, and the rest of my personal/professional identities. As mentioned earlier, I tried to be open with participants about my professional views, while also communicating respect for, and understanding of, their perspectives. At times, I was aware of my biases in the moment and tried to respond to them accordingly. For example, I was aware that my professional training and values influenced how I experienced and responded to Elsie‟s comments about feeling more depressed and wanting to kill herself. Ethically, I felt a responsibility to encourage her to be open with her therapist about what she was going through, especially given the nature of her suicidal thoughts. However, I also disclosed my struggle to Elsie as a way of modeling the kind of dialogue that I encouraged her to have with her therapist. Since therapy is one of the few outlets available to her to address her intense emotional distress, I felt that it was important for Elsie to maintain this relationship, despite her fear that her therapist would send her to the hospital again. At other times, I was not as aware of my biases; and, in one instance, I received feedback about bias in the language that I used. As mentioned earlier, Sally provided extensive follow-up feedback about my analysis of our conversation, and reviewing Sally‟s feedback helped to increase my awareness of biases that may have been present in my language. For example, Sally‟s suggested revision of how I described her first hospitalization led me to re-examine my use of professional terms such as “admitted,” and attempt to match my language to Sally‟s narrative. In addition, Sally‟s comment about detecting a pro-involuntary medication bias in my writing led me to re-examine the tone and wording of my analysis. Although I am not consciously aware of holding any biases toward being in favor of involuntary medication, I believe that my understanding of Sally‟s ambivalence about mainstream mental health treatment differed from Sally‟s experience. In other words, Sally disagreed with some of my statements that portrayed her as ambivalent regarding involuntary treatment and medication at times. Part of this discrepancy seemed to relate to her strong identification with what I called her “dominant position” or “main narrative” over her contrapuntal voices. However, it is also possible that I was reading too much into her statements, since I was actively looking for inner dialogue in my analysis. I found it valuable to examine how my perspective was similar to and/or different from the perspectives offered by my participants. Although conducting the present study did not change my major views about the mental health system, it did lead me to be more aware of the language I use to think and talk about the system. This change occurred as I reflected upon the

96 language that participants used and how it compared to how I wrote about their stories. In addition, it also occurred through my attempts to collaborate with participants. For example, prior to my follow-up contact with Sally, I did not think about how the term “admit” could be so inconsistent with her experience of an involuntary hospitalization. If a person has an experience of being “seized” and I or another mental health professional are talking about how the person was “admitted,” we are talking about two completely different events. As mentioned before, even though I do not subscribe to the medical model and other tenets of the mainstream mental health paradigm, I still work within the system and cannot help but be influenced by it. Hearing the stories of Sally, Elsie, and Marcia helped to remind me of this fact and understand that all mental health professionals need constant reminders of our biases and assumptions. Completing the present study also has changed the way I think about mental health reform, mainly through having a first-hand opportunity to engage participants in a discussion about this issue. Prior to my conversations with participants in this study, I primarily thought about mental health reform in terms of how mental health professionals can be more respectful of people we seek to help, and provide services that people find empowering and helpful. Although I was aware that accomplishing these goals should involve consulting with consumer and survivor organizations, I now have a greater appreciation of the need for more mutual dialogue and collaboration. I believe this change occurred because the process of listening to, and writing about, participants‟ stories helped me feel an emotional connection with my participants. I was able to empathize with the emotional impact that the mental health system has had on each participant. Therefore, I view the topic of mental health reform as an issue that we can only address effectively when other professionals are able to take this step and allow the stories of clients, patients, consumers and survivors to direct the process of change. For this type of change to occur, we must form a partnership with these groups of people and communicate that we value their expertise. Schneider, et al. (2004) offered an excellent example of such a partnership through a participatory research project that involved a collaboration between a psychology researcher and members of a Canadian peer support group for people with schizophrenia. The research project involved participants conducting in-depth interviews with each other about their experiences with medical professionals that they coded for major themes and used to draft recommendations for medical professionals about how they would like to be treated.

Limitations of the Present Study There were several limitations in this study, in part due to the extensive nature of the methodology I used. As mentioned earlier, basing my method on the Listening Guide provided a great deal of depth to my analysis and promoted dialogue, self-reflection, and attention to the language of my participants. However, I was unable to speak to a large variety of participants to include other voices into the present study. The three participants in the present study were all Caucasian women in their early to late 40s who were currently receiving outpatient mental health services and were each hospitalized on previous occasions. It would be helpful for future studies to speak to men, people of different ethnic and cultural backgrounds, and people who have had a variety of treatment experiences. I believe that non-Caucasian participants could have spoken about how discrimination based on race or ethnicity intersects with discrimination based on mental health issues. Several authors have discussed the issue of race bias in how professionals utilize psychiatric diagnoses (e.g., Ali, 2004; Garb, 1998). In a study by Loring and Powell (1988), the sex and race of both hypothetical clients and the psychiatrists asked to provide

97 diagnoses for them significantly influenced diagnoses the psychiatrists made. For example, both Caucasian and African-American psychiatrists were more likely to give hypothetical patients labeled as African-American more severe diagnoses, such as paranoid schizophrenia. Therefore, to understand better the potential for race bias in the mental health system, it is important to hear about the experiences of people from various cultures and ethnic backgrounds. The issue of gender was not a major focus of participants‟ narratives. However, the issue of gender still may have affected their experiences in the mental health system. In fact, much of what Sally and Elsie had to say about feeling mistreated by the mental health system is consistent with broader criticisms of bias against women in the DSM and the medical model. For example, Caplan (1995) discussed how certain DSM diagnoses serve to pathologize the experience of women as being “histrionic,” “borderline,” or similarly defective. Cosgrove and Riddle (2004) also discussed the assumption of a male norm in clinical studies and the use of diagnostic terms that decontextualize the experiences of women, such as “poor self-esteem.” Breggin (1991) noted that women typically receive diagnoses of depression more often than men do. In addition, in examining over ten years of ECT data, Breggin found that over two-thirds of people who received ECT had been women. This statistic begs the question of how many other women have had experiences similar to those that Elsie described. In light of the points made by these authors, it would be helpful to speak to male patients/consumers/survivors to contrast their experiences with those of the women with whom I spoke. Another limitation of the present study was that I was unable to obtain follow-up feedback from all of my participants, most likely due to the long time gap between my initial conversations with participants and my attempts to make follow up contacts. This problem was mainly due to my progress being slow with regard to transcribing and analyzing conversations. If I were to engage in a similar project in the future, I would use a research team to help expedite the analysis process. In addition, involving multiple researchers would bring a variety of other perspectives into the process, and therefore add more qualitative data. It also could be beneficial to expand the role of participants in future similar studies. For example, participants in the aforementioned study performed by Schneider, et al. (2004) helped analyze interview transcripts. Doing so could make the analysis a more lengthy process, since it would take additional time to coordinate with participants. However, it also could allow the voices of participants to come through more strongly, and make the study more collaborative. Increased collaboration with participants would have been especially beneficial with regard to the use of poetry in the present study. One final limitation of the present study was the potential for participants to feel violated by the fact that I was using their words to create poems. Although participants did not express any strong feelings, positive or negative, about my use of poems in this study, this was the part of my method where I took the most liberties with how I presented participants‟ words. Even though I attempted to be very careful with how I used participants‟ words, there was still the potential for abuses of power in my method, especially given my position as a researcher and mental health professional. Because of this potential for violation, I tried to take the utmost care to describe the context of each poem and create poems that fit with the overarching themes of each participant‟s narrative. However, I may have been able to amplify the emotional impact the poems in this study, by inviting participants to create or co-create the poems as part of the analysis. Researchers should consider these issues when conducting future studies using poetry.

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Appendix A: Informed Consent Form

Description of study: I am participating in a research study through the Miami University Psychology Department. The purpose of this study is to learn about people‟s experiences of stigma, discrimination, and empowerment within the mental health system, and discuss ways to improve how the mental health system is currently set up. I will be asked to participate in at least one face-to-face or telephone interview that will be audio-taped and take approximately 2-3 hours and will take place at a mutually convenient location. As part of my participation in this study, I will be treated as an expert about my experience of the mental health system, and as such, I will be able to provide input as to how the information discussed in the interview will be presented. The researcher will (either by mail, e-mail, or in person) provide me with a summary and interpretations of the content of our interview. I will be given time to review this material and add, change, and/or delete parts of it. My total participation in this study will be approximately 3-5 hours (depending on the length of the interview, and the amount of time I choose to spend collaborating about how the final form this study will be presented).

Risks: I may experience some discomfort at being asked to disclose personal information during my interview, especially given the potentially emotional nature of the material being discussed. I may choose not to answer questions or discuss topics with which I am uncomfortable. I also understand that I have the option to discontinue my participation at any time during the study.

Benefits: My participation may help benefit the field of psychology in that it can provide a model for how mental health professionals can collaborate with mental health consumers, survivors, clients, patients, and users in a way that is non-coercive and values their opinions. My participation also may help further our knowledge of stigma, discrimination, and empowerment in the mental health system. I will not be paid for my participation. However, I may gain a better understand my own experiences and/or feel more comfortable expressing my views about the mental health system.

Alternatives: There are no alternative research options in this study. However, I am free to discontinue my participation at any time.

Confidentiality: My interviewer will have access to identifying information about me (e.g., my name, contact information, etc.). Dr. Larry Leitner, the faculty advisor for the study, is the only other person who will have access to my identifying information. In the final part of this study, I will have control over how the information I provide about myself may be used in published research reports. I understand that someone who knows me well may be able to recognize some of my statements. Therefore, I also have the right to specify which personal information that I would like falsified to protect my anonymity in the event of written publication or presentation of this research.

Questions: If I have questions about my participation in this study or about the study itself, I may contact Donald Domenici at 529-2423 ([email protected]) or Dr. Larry Leitner (faculty advisor) at 529-2410. If I have questions about my rights as a research participant, I may contact the Office for the Advancement of Research and Scholarship at 529-3734 ([email protected]).

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Note: By signing your name below, you are indicating that you understand your participation is voluntary, you are giving your consent to be audio-taped, that your responses will be kept confidential, and that you are at least 18 years of age.

______Participant Signature Witness Signature

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Appendix B: Open-Ended Interview Protocol I. Social/Cultural Context and History a. Tell me about your family history and cultural background. b. What are some of the most important relationships in your life? II. General Experiences in the Mental Health System a. How did you first get involved in the mental health system? b. What kinds of treatment have you received? c. How did these treatments affect you? What was your experience of them? III. Stigma and Discrimination a. In what ways have you experienced stigma or negative stereotyping (either because of having a psychiatric label, or for related reasons). b. In what ways have you experienced discrimination because of experiencing psychological problems or having a psychiatric label (e.g., being denied rights or services, treated unfairly, socially excluded, verbally or physically attacked). IV. Empowerment and Voice a. In what ways have your experiences in the mental health system led you to feel more empowered in your life (e.g., able to make your own choices, express your voice, participate fully in society)? b. In what ways have your experiences in the mental health system led you to feel more disempowered in your life (e.g., having your voice stifled, not being able to make your own decisions or participate in society)? V. Mental Health Reform a. In what ways can the mental health system be improved to better meet your needs and/or the needs of people who utilize mental health services? b. Specifically, how can mental health professionals work to facilitate empowerment among people who receive mental health services? c. What can mental health professionals do to help eliminate stigma and discrimination among people who experience serious psychological problems?

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Appendix C: Sample Listening Guide Analyses Step 1: Listening for the Plot a) Summarize the plot, setting, characters, and themes (e.g., “X then talked about how she felt like no one trusted her when she was in the hospital. She explained that . . .”). b) Note one‟s own responses to the story (e.g., “I felt helpless as I listened to this story. I kept thinking about the bleak picture that X was painting. . .”). Step 2: I Poems a) Sample Text (with I-statements underlined): “I am worried that when I leave here there won‟t be anyone that will take me in . . . it‟s like nobody trusts me anymore. I don‟t know what to think.” b) Sample Lines from „I Poem‟: I am worried When I leave here I don‟t know Step 3: Contrapuntal Voices a) Sample Text (with respective contrapuntal voices underlined and italicized): “I don‟t think I deserved to be put on medication against my own will - I was pissed off at being treated like a child who couldn‟t make her own decisions. I mean, I know it was for my own good because I was doing things to hurt myself and I don‟t know what else could have been done. . .” b) Examples of Contrapuntal Voices: 1. (underlined): Angry voice; 2. (italicized): Compliant voice. Step 4: Composing an Analysis a) Synthesize interpretations from each listening into a summary (i.e., describe the relationship between voices in the context of the plot and setting). b) Address initial research questions based on these interpretations. Added Step: Content Poems a) Sample Text (with specific content statements underlined): “My depression was like a smothering fog. I didn‟t want to leave the house or talk to anyone. When I think about the impact of depression on my life I feel like I‟ve missed out on so many things that other people take for granted . . . It‟s like - when I feel depressed it‟s like the whole world disappears.” b) Sample Lines from Content Poem: My depression was like a smothering fog The impact of depression When I feel depressed it‟s like the whole world disappears

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Appendix D: Transcript of Conversation with Participant 1 (Sally) Introduction: Don (D) explains that the interview will be used as part of his dissertation project, and describes a bit about his background (personally, academically, theoretically).

D: . . . is there anything that you‟d like to know about me before we start?

S: No, not at all but I really appreciate all the opportunities you‟ve had for me to ask you questions.

D: Yeah, I‟m. . . I want to see this as kind of a dialogue, and I hope that there could be some back and forth, so. . .

S: Great.

D: Yeah, if there‟s anything that comes up along the way, um, feel free.

S: Okay.

D: Okay. And the other I wanted to mention – if at any time you have trouble hearing me, or if the uh – my phone goes out just let me know.

S: Okay (laughs).

D: Okay, I um, thought maybe we‟d start with some general background questions about yourself.

S: Okay.

D: Um, maybe you can start by telling me a little bit about who you are, and, uh, maybe the background you‟re coming from – family or cultural background.

S: Okay, um, well I come from a - family of, uh – four children – I‟m the oldest of four.

D: Okay.

S: And…um…white, I guess if you wanted to know ethnicity. But I‟ve grown up in a lot of, uh – culturally rich areas. I‟ve, I mean, a lot of my friends are Asian and I‟ve had a lot of different friends of different backgrounds, I was the, uh… vice president of the international student association when I was on college campus.

D: Mm-hm.

S: So I‟ve done a – um, I‟ve…just – and I went to an elementary school that was very mixed interracially, it was – we had a lot of Jewish, a lot of Blacks, a lot of Catholics…and so it was good.

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D: Okay, so – a lot of cultural diversity…

S: Mm-hm.

D: …throughout your life.

S: Mm-hm.

D: Um, have you always lived in (the state she lives in)?

S: Uh, no. I grew up in (another state).

D: Oh, okay.

S: And I went to school in (another area).

D: Mm-hm.

S: And to college in (another state) – undergraduate, in (same state).

D: Okay, where‟d you go in (the state she mentioned)?

S: Um, I‟d rather not this – I‟d rather this part not be part of the study.

D: Oh – that‟s… that‟s fair enough.

S: Okay (laughs). Um, (S names a specific college/university).

D: I‟m sorry?

S: (S repeats the name) is where I went.

D: Uh-huh.

S: Do you – have you heard of it?

D: Um, I‟ve heard of a (same name) in, uh ….

S: (S names a specific area).

D: Is it toward, like (a particular city)?

S: Yes, uh-huh.

D: Yeah, I‟ve heard of it.

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S: That‟s – that‟s where I went to college.

D: Oh, okay.

S: Okay, but I‟d rather that not be mentioned in the study.

D: Okay. I‟ll take that out when I do transcribing. I‟ll just remove the details on that.

S: Okay, great.

D: Um, and then I guess I should mention that, um… everyone has the – the option to use a pseudonym and I think you said you did want to do that, right?

S: Yes. I do want to use a pseudonym.

D: Um, if you want I could let you pick the pseudonym that you want, otherwise I‟ll just make it something nondescript.

S: Yes – nondescript pseudonym is fine.

D: Okay. That‟s – that‟s fine.

S: Okay, great.

D: Okay, um, anything else that you think is important, about - for me to know about your family background or anything like that?

S: Um… well, I – then I came to (a specific state)… and I got a job here after I graduated college – and then I pursued graduate school here, afterward.

D: Okay.

S: Um, in – in (a city), and I‟d rather not leave the city where I‟m from in (a state).

D: Sure. Um, what is your um – what did you pursue graduate training in? What field?

S: Um, I‟d rather leave that - (laughs).

D: Okay.

S: I‟d rather leave that out also.

D: Sure – that‟s fine. I think it – it goes without saying and I think I mentioned in the informed consent form that - anything you feel uncomfortable talking about…um, you don‟t have to mention.

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S: And – I feel comfortable talking about this stuff, but it‟s just I don‟t want this as part of the study.

D: Mm-hm.

S: So, if it‟s helpful for you to know, I can let you know it as long as it‟ll be (protected?)

D: Um, I guess it‟s only helpful for me to know if you feel like it‟s, um – an important part of who you are that - that…you know I…that it would be important for me -

S: I don‟t think it really matters

D: Okay. In that case -

S: Um, and you can say I got two different graduate degrees.

D: Okay. Alright, um – another thing, since I – I kind of take a – an approach to learning about people that involves, um – you know, relationships as extremely important… I‟m just wondering if there are some…

S: Oh, I‟m divorced.

D: Uh, okay.

S: Okay.

D: I was just wondering what some of the most important relationships in your life are right now, or in your past, either one.

S: Um…my friends have always been most important to me.

D: Mm-hm………okay. So would you say you have a – a kind of a close – group of friends that – you feel comfortable with?

S: Mm-hm, and I always have had my gr – friendships have changed over the years, where – because I‟ve been to different geographic locations.

D: Right.

S: And so the friendships have changed wherever I‟ve been – um, but they‟ve always been important to me.

D: Mm-hm. I‟ve always, um – personally I‟ve always felt like in some ways my friends were kind of my family – my close friends were, uh…

S: That‟s the way it is for me.

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D: …sort of my family to me.

S: Yes, I‟ve not been – I‟ve not been real close with my family.

D: I see. Yeah. Alright, um – anything else about you that - you feel would be important for me to know before I – ask any more – uh specific questions about…

S: Well…

D: …uh, the mental health system, or whatnot?

S: Growing – growing up I had a um…I had an emotionally turmoil relationship with my mother.

D: Okay.

S: And…since I‟ve been in the mental health system I‟ve cut it off with my mom because it became too unbearing. And…it‟s been a relief for me to cut that relationship off (laughs).

D: Yeah.

S: Fortunately (laughs). So…

D: You said since you‟ve been in the mental health system, is that – did that have something to do with making the choice to cut -

S: Yes.

D: Okay.

S: Yes. She wanted me to be on medication and -

D: I see.

S: - that‟s all she would talk to me about on the phone was – she would just call me out – “are you on medication?” and “take medication” and “just do it” this and that – and I just – I couldn‟t deal with it anymore. So…

D: Yeah, I can see why. Um – one of, uh – one of the things I‟m interested in, and I – I feel like this – this comes up with regard to, uh forced treatment, and with regard to medication.

S: Mm-hm.

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D: Um, I, I sometimes wonder if those kinds of, uh – those kinds of alternatives are…almost like a rehashing of um, of parent…parent-child relationships, and some of the dynamics that – that exist, I was wondering if that was the case for you, was…

S: Yes. Yes, very much so.

D: Was your mom‟s uh…trying to get you on medication – was that kind of indicative of some of the things that you and her had been through in the past?

S: Uh…

D: With regard to just y-your relationship in general?

S: Yeah – uh, she never forced me to be on medication but she‟d always force me to do a lot of things growing up.

D: Okay.

S: And, would not allow me to be my own person.

D: I see.

S: Like, for example – and this is very, um – very important to the relationship. She pushed me in junior high, she wanted me to date – and I personally thought that was too young for dating (slight laugh).

D: Wow.

S: And (laughs) um, I had brought – I had friends both females and males but I just wanted – I didn‟t want to date, I had no interest in dating, all through high school I had no interest in dating, and she kept pushing me, and she kept wanting to visit- she pushed me to see if I wanted to see a psychiatrist to see if – I was lesbian, as if there was something wrong with me if I was.

D: Ugh – geez.

S: So, yeah. It was – very difficult, and…

D: Yeah, I can imagine.

S: in college – she came out to visit me. I did not want her to visit me on parent‟s weekend but she – I told her no she could not visit me and then she asked my roommate, and my roommate said “yes, come on out –you can stay in my room, I go someplace else.”

D: Mm-hm, mm-hm.

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S: And, so she came out to visit me in college, and I had a male friend – and…I had actually, numerous male friends. But one male friend, um, I had a particular strong friendship with – and she came out and she kept asking the whole time, “are you gonna date him? You should date him, you should date him.” And, that kind of ended the friendship between him and I. It just made things real awkward, and eventually…

D: Right - yeah. Yeah.

S: And… that was real unfortunate and – she had always been that way with me……so…

D: So it‟s just another example of kinda - trying to push you in a direction that you didn‟t want to go in…

S: Exactly.

D: Or, not letting you make your own decisions.

S: Exactly, and another indicative thing is that she would have me wear – um – always wanted me to wear girlish clothes that would show off my figure growing up, and I never wanted to be – I was – I didn‟t have the athletic ability to be tomboy, but I was tomboy personality even that I didn‟t have the athletic ability.

D: Mm-hm. Mm-hm.

S: And so I‟ve always preferred to wear boyish clothes - in fact, when my brothers got hand-me- downs, I used to – take the hand-me-downs, „cause they don‟t want to look at them, and they were more my size anyway, and would wear those – the flannel shirts and the jeans.

D: Right, right.

S: And, my mom would always push me to try to wear me dresses and halter tops, and stuff like that, that I hated – and we didn‟t have a lot of money, and… I did do babysitting on my own, but I hated – spending my babysitting money (I wanted to save it for college), for clothes, because clothes were so expensive. And, so I ended up wearing a lot of the clothes that I hated- because those were the clothes that she would buy me, or I would get hand-me-downs from people, and I got a lot of – hand-me-downs from cousins that were, um… a lot of hand-me-downs from cousins that were out of style. And, because they were – about eight years older than I was, and so, by the time I got them they were really out of style – and I was always forced to wear them, uh – purple jeans, and high waters clothes, and baggy pants.

D: Mm…

S: Uh, baggy – baggy, uh the, um, what do you call it? The – bellbottoms, that‟s what you call them.

D: Oh yeah.

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S: Yeah (laughs). So…

D: Things that were a few years out of style.

S: Yeah. Exactly (laughs). And so I had a lot of resentment towards my mom with that – and her again, pushing me, doing... to be somebody who I wasn‟t – and she never – I don‟t think she really understood – who I was, and she always wanted me to be somebody who I wasn‟t.

D: Yeah, th-that definitely sounds like it.

S: Yes.

D: So would you say that the… her trying to push you to be on medication was the – sort of like the last straw, or the culmination of that?

S: Um… it…it was – like the last straw for me.

D: Yeah.

S: It was just too much for me to handle „cause – the mental health… once I got diagnosed – once I got involuntarily hospitalized which happened after I got my two graduate degrees and after I was out in the working world…um, and I had always had a consistent work history – I got, um…it was about five years ago – I got involuntarily hospitalized. And when I got involuntarily hospitalized, I just felt my – like, life was too much for me. And… I wasn‟t suicidal or anything like that, but I just, with her wanting to force me on medication I just couldn‟t handle it anymore, and I‟d always – before that I had always tried to cover up the relationship and tried to, because I wanted to have a good relationship with my mother.

D: Mm-hm.

S: So I tried often to appease it over and most of the time I wouldn‟t tell my friends that I had any problem with my mother or anything like that. But, um, any guy who I dated my um… any guy who I dated if, in the area if they ever met my mom, they knew how much of a pain in the neck she was to me (laughs).

D: (laughs).

S: They never liked being around her (slight laugh).

D: Yeah.

S: So…(slight laugh).

D: Okay…

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S: I am in a dating relationship now.

D: Okay. Would you say that‟s one of your closest relationships in your life right now?

S: Yeah. Mm-hm.

D: Okay. And, just curious, um – around when was the last time you spoke to you mom –um, how long ago was that? Cutting – cutting off that relationship…

S: Um…okay. It was… uh, let‟s see about three years ago?

D: Okay. Alright…just trying to get a – a sense of a – of a timeline…okay.

S: And it, and so I already mentioned it was about five years ago I got hosp- I got hospitalized.

D: Yeah.

S: So it took me a while to cut off that relationship with her just because I just didn‟t have the – I didn‟t have the guts to just do it (laughs).

D: I see, yeah. Were you, um – were you taking medication while you were hospitalized…that whole time, or…?

S: Um… I was forced to I…

D: Yeah.

S: I never voluntarily consented to take the medication…

D: Mm-hm.

S: …so each time I was court-ordered to take the medication – because I refused to take the medication so they decided I was irrational and didn‟t have the ability to consent to medication because I was refusing to take medication.

D: Mm-hm.

S: And… I should have never told my mom I got involuntarily hospitalized. What happened is the first time I got involuntarily hospitalized, I called a friend of mine, and…I told her where I was about the situation – I had no thoughts in my mind at all to tell my mom. And she was the one that suggested for me to call my mom. And she says – because she knew about the system, she says “your mom might be able to get you out.”

D: Oh…

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S: And sure enough, I called my mom – my mom came down to the hospital, and they asked me if I wanted to go live with my mother – or stay in the hospital. And I said no way was I going to go live with my mother (laughs). I said I preferred to stay in the hospital (laughing). And so it – she was right, my friend was right so I really appreciate the advice – the fact that what she said that my mom might be able to get me out of the hospital „cause she was darn right, but that wasn‟t for me and I should – in hindsight I should have never told my mom I had been hospitalized.

D: Right…

S: So (laughs).

D: Yeah, so that was an alternative, but not one that you wanted to…

S: Exactly (laughs).

D: …to go with, yeah. Okay, um – how long, uh, were you on, uh, medication overall?

S: Uh… I‟ve been on and off it for the past five years.

D: Okay.

S: And each time I‟ve been on it I‟ve only been on it under court order.

D: Yes, yeah. Right, are you currently taking medication?

S: Yes, I‟m currently on, uh, 25 mg. of Haldol.

D: Okay.

S: And, I was on 100 mg. of Ha-Haldol – they increased it, they said they were going to put me on a low dosage of medication – they increased in the hospital, I think, out of retaliation because I was writing all these grievances…

D: Mm…mm-hm, mm-hm.

S: And… um… they increased it very fast to 100 mg. and it was way, way too much.

D: Yeah, that‟s sounds like a lot.

S: And… I was, um – and I just was having awful – I just was, I just was having trouble sleeping, I just was having trouble functioning during the day doing anything. And fortunately on the outpatient – the…uh…psychiatrist I‟m seeing, I complained to her a lot and she was able to reduce it to 25 mg. -

D: Mm-hm.

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S: …I‟ve been on 25 mg. for a while, she said that the lowest she‟ll go though.

D: Mm…

S: So…

D: Okay. Um, I guess – can we go back to, um, how your first experience with the – the mental health system? Um, you said you had been hospitalized five years ago… was that, um, the first time that you had received any – any kind of treatment, forced or otherwise?

S: Yes.

D: Okay, um…and what were some of the events that led up to that?

S: Okay, well – it‟s a long story, but let me just give you a little bit more background first.

D: Sure, that‟s fine.

S: The background is that I was working in the school system…

D: Mm-hm.

S: …and I was an educator…

D: Okay.

S: …and I don‟t want to give more specific things from my job than that - just an educator.

D: Yeah.

S: And… um, I thought kids – many teachers recommended and counselors recommended that children be on recomm – on medication. I would often get nurses to come the meetings to give – the negative – information, we had very good school nurses…

D: Mm-hm.

S: …who would give the negative – the pros of Ritalin and stuff like that on the medication. And so, um – I was an a – I was an advocate for kids to be not on medication when I was in the schools, before I ever hit the mental health system.

D: Okay.

S: So, I had already established a precedent with that…and…

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D: Um, wh-what kinds of things led you to taking that position? „Cause it sounds like you didn‟t have any experience with that personally before that – is that, is that correct?

S: Well… I had been a skeptic of medication growing up, I guess.

D: Okay.

S: Um… and…

D: Was it something you had seen in your – with people you knew, or just…?

S: Well – the first example was is that I was in high school – I was in athletics, I didn‟t have athletic ability, but I did endurance events.

D: Mm-hm.

S: And… um… in high school I had a knee injury. And the knee injury that I had, um… the knee injury that I had, um… it um… they put me on, I think it was – was it Tylenol or Bayer? Or, or… Bufferin. Oh sorry – Tylenol first.

D: Okay.

S: They put me on Tylenol first, and… for the knee injury and then I was having such severe headaches and nausea and so then they changed it to Bufferin. And I was still experiencing headaches, and – and, I didn‟t like it, and I also realized that I couldn‟t feel the pain of my knee when I was on the medication.

D: Mm…

S: And… my knee wasn‟t getting any better, and I was out of season – and, so I wasn‟t able to compete. And, so I stopped taking the medication, and then I could feel the pain – the pain came back, but I could moderate the pain.

D: Right, right.

S: And, so then I decided that I‟d much rather feel the pain and my knee got better after time and I – I still have knee problems since that time, occasionally. But it‟s never stopped me from doing any activity – I just moderate my own pain.

D: Mm-hm.

S: Um, another example is that when I was a child in school – in um, elementary school and junior high, I had allergies or – uh I guess it – we n- we never figured out what they were. But I had headaches and sore throats, things like that. And… the doctors thought they were allergic to dust, or allergic to – um… something else, I don‟t – or whatever. They had different philosophies of what they could be allergic to.

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D: Mm-hm.

S: And… I thought they were allergic to the heating system – the heating system. Um, I noticed when the heater system was on I had more problems with it. But anyway, um… I was prescribed sometimes – um, some different types of medication for the headaches and sore throat – and I never liked taking them. So, my mom, if she forced me to take „em I would take „em, but most of the time my mom… growing up I was very independent. And… I, as I said I was the oldest of four f-f- four kids, and I raised a lot of my siblings. And… I um, so – I was left to take the medication on my own but I just never took „em (short laugh).

D: Right.

S: And… so I healed after that and I, you know I outgrew - if they were allergies or whatever they were – I outgrew it or else learned to avoid the environment or whatever they were in, and um, I just learned to work around them. And…

D: Mm-hm, mm-hm.

S: And…

D: So just - just like with the knee injury.

S: Yes. Exactly.

D: Those – those sound like really powerful experiences…

S: Mm-hm.

D: …um, that – you know, are physical injuries but definitely relate to – kind of like the pros and cons of taking medication - any kind of medication.

S: Yes.

D: Um, but that‟s - that‟s really interesting, yeah.

S: Mm-hm. And, um – and then just when I was at school as an educator I took a course in ADHD.

S: Uh-huh.

S: And… they had, um – we learned that, um – for ADHD we learned that you could do behavioral interventions but also you needed medication, and that it wouldn‟t – it wouldn‟t work without medication. And I was really skeptical of the… medication, uh, paradigm with that, I thought, “why can‟t the behavioral interventions work on their own?”

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D: Mm…

S: Because of my own experiences at school, and just because some of the ADHD descriptors sounded like what I was (laughs) – at school.

D: Mm.

S: And I thought, “Hey wait a minute – I haven‟t needed medication like this, or you know like that.” (laughs) And so, um, just – the behavior interventions sounded like they were just common sense interventions, so I was just real skeptical. Um, however, there were a number of kids at school that told me that they liked taking the Ritalin and they felt that they functioned better on Ritalin, so I thought “Okay, maybe it really does help them.” So I, you know don‟t really know.

D: Hm. So then as a, as an, as an educator that was - the position you were coming from.

S: Yes, as an educator I believed in choice, actually.

D: Yes.

S: And that was my biggest strong point. And so the kids - if a kid said they hated taking Ritalin…

D: Right…

S: …then I would try to get the nurse there at the meetings; try to advocate – you know – look there‟s - potentially long-term effects of, adverse effects of Ritalin, and…

D: Yeah, yeah.

S: …you know and, you can‟t believe all the marketing, you know all the marketing that they do of the drug, and stuff like that.

D: Mm-hm.

S: But if the kid said hey the Ritalin really helped them I thought, “Oh okay – you know, well, then great.” (short laugh)

D: Mm-hm.

S: So…

D: Yeah, it‟s definitely, it seems like a theme that‟s – that‟s run through everything you‟ve told me so far, is that – that emphasis on choice.

S: Yes, choice. Mm-hm.

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D: Okay, and then – okay. Where were we…

S: And I do believe that some forced choice is good, like one of the things my parents had me do is my parents required that I participate in athletic activities when I was in school growing up.

D: Okay.

S: And… that was torture for me because I had no athletic ability. And… I tried out for every team and I got cut from every team there ever was. (laughs)

D: Mm.

S: Until, finally I learned about some endurance, uh, sports, and… I tried out for them and they didn‟t cut me, they just took anybody who was willing to do the endurance events. (laughs) And, uh, and so I stayed. And so it was very painful for me to go out for all those things but I think the exercise was good and healthy. And I - I wasn‟t a sit around, bum and, kid at home – I wasn‟t a couch potato.

D: Mm-hm.

S: I did my own cycling anyway, and I would do a lot of walking, I would walk to the store, like I was very independent and the store was, the food store was a half mile away. And I would walk to the food store all the time.

D: Mm-hm.

S: And… um, I did a lot of hiking growing up. And, so I was a very outdoorsy kid, I just couldn‟t make the sports teams – and – even though I very much wanted to be on the sports teams. And, so um – anyway, I um, so – with that I do think that you know, I do think that my parents had a good situation that I should have tried – I don‟t think I had to have gone out for some sport, as long as I was active and exercising, which I was doing.

D: Mm-hm.

S: And… I did a lot of pogo-sticking, jumping, and stuff like that too. And… um, as - as long as I was active, which I was – but I was always into other activities. I was into the student newspaper and um, a lot of other different activities. Um… I was involved in yearbook and stuff like that, and that um… so I don‟t - I think that requiring kids to be in at least one activity whether it‟s debate club, or a sport, or um, something like that, I think it‟s good social skills.

D: Mm-hm.

S: So I think that there should be some forced choice, but I think there should be a choice of a wide res– wide range of spectrum, or whether it‟s choir or drama or what it is.

D: I see. Yeah, it sounds like just not pushing the kid in one direction or another, but…

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S: Exactly.

D: …saying, “try something, you know. See if you like it. See what works for you.”

S: Uh-huh. Exactly. Mm-hm.

D: Okay. Um…

S: Oh, another thing that my mom did too, which is very painful for me too that I will say is, you know, is part of the history too is that, when I was 12 years old my mother forced me to get my ears pierced.

D: Mm.

S: And… that was very painful. I cried in the parking lot and I was 12 years old but I was pulling a tantrum - di- because I didn‟t want to get my ears pierced. And… they had to do the Novocaine twice…

D: Ouch.

S: …they did it and it was very painful. And… I wore earrings all the time, all through college because my mom had always told me “if they close up you‟ll regret it someday.” Well, to this day I‟ve never regretted it and – about ten years ago I stopped wearing earrings and I haven‟t worn earrings since.

D: Wow. It sounds like another – just another example of her wanting you to be – to look a certain way or be more feminine or something like that.

S: Exactly. A combination (slight laugh).

D: Yeah. Yeah. So… where were we – um, oh. Yeah, you were – you were telling me about your position as an educator with regard to children and medication. Um… and that um leading to your first encounter with the mental health system.

S: Oh, right. Uh-huh. The first encounter with the mental health system was very scary and was very… um… um, very unfortunate. And… um... it was – I was (sighs) – it‟s kind of a long story. I was un-, I‟ll try to make it as…

D: You can make it as long or as short as you want.

S: Okay (laughs). Um, I was under a lot of stress from work. And… I wasn‟t sleeping much. And… I wasn‟t sleeping partly because of the long hours – I had two jobs at the time.

D: Okay.

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S: And… um, I was – so I wasn‟t sleeping much „cause my schedule didn‟t allow it much. And… a um… a… (long pause). A friend of mine - (sighs) yeah I guess I will wind up making this a little long - heh. A um, friend of mine asked, um… a friend of mine I had been particularly worried about. And… she had been hospitalized; she had been taken to a mental health hospital by a male who she had been spending some time with. And… I was suspicious of that male. Um… at first she told me about him and I met him and I thought he was a great friend for her.

D: Mm.

S: But then, after she told me that he was having an affair, um… with this person who was related to the military, and – um… it doesn‟t matter who the affair was, but just that he was having an affair with someone else. Um… but the military – the fact that it was military gave me fear because of just being fear of the fact that he might have access to guns.

D: Right, right.

S: So that – that was my own… my own, uh… I guess, uh… m- my own feeler for that. And… so anyway, um… but - I‟ve had friends who have been in the military and have been able – I‟m, I‟m pro-peace, I‟m not pro-war at all. So… I‟ve tried to avoid the military but I‟ve had, I‟ve had friends who have been in the military before and stuff like that and I don‟t hold personal biases against them. But I just don‟t like…

D: Mm-hm. So it sounds like you just kind of had a vibe about this guy.

S: Exactly (laughs). Well, and who he was hanging around with – the affair of how- hanging around with is just the fact that, yeah…

D: Right. Right.

S: And… so anyway and he – she told me that he had taken her to the mental hosp-hospital. And… that she spent about a day in the mental hospital – hospital. And… I just was real suspicious of- of him for “why did he do that?” and I just thought… w-… you know and – I didn‟t like, I didn‟t like the fact that he had done that.

D: Yeah. Sounds a little weird.

S: Yes. And… um… he might have done that to get her some um, financial assistance – like Social Security assistance or something like that.

D: Okay.

S: That, that‟s my suspicion why he might have done that but I‟m not really sure. But she was depressed at the time.

D: Mm-hm.

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S: And so he did take her to the hospital and she kept trying to depend upon me, um for her depression. And… I felt a heavy burden for her – for her depression and kept trying to say she needs to just talk to somebody else and not to me all the time.

D: Mm.

S: And… um… so anyway, this one day she called me, and… I had been - the night before I had been on the phone for a few hours with a old college friend of mine. And… a male college friend of mine. And… who I‟ve had a on and off friendship relationship with.

D: Mm-hm.

S: And… um… we spoke on the out- we spoke on the phone for about three hours or so. And… um… then the next morning sh- I got a- I got a message from her, saying that she was lonely and depressed and she didn‟t know what to do with her life or anything more and - that I needed to come see her right away.

D: Mm-hm.

S: And… it sounded like real desperate. And… also that morning I had gotten a phone call from the guy who I‟m in a relationship with now – I had broken off the relationship with him.

D: Okay.

S: And… um… I had gotten a phone call from him that morning. And… he um - the reason I had broken off the relationship with him is because I had found out from him that he had sexually assaulted somebody when he was a ch- when he was a teenager.

D: Oh, wow.

S: Yes. And so I had broken off the relationship with him. Um… he has now since - he has since that time gone through counseling.

D: Mm-hm.

S: And… he was also addicted to pornography. And he has gone through counseling for both.

D: Mm-hm.

S: And… it was in his childhood, and…it was – it was a minor sexual assault but it was still big enough for me. And… um…

D: Mm-hm. Yeah, I could see how that would be a shock hearing it.

S: Exactly. But – so, so having worked through it and all I‟ve forgiven him and I think that- I don‟t think he‟ll do it again.

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D: Mm-hm.

S: And especially because of the fact that he‟s gone into counseling and he‟s open and he‟s talked to me about it and stuff like that, so that‟s why I got- I later got back into a relationship with him again. Um… but anyway I had broken off the relationship with him at the time. And… I was the only one who knew about his… the fact that he had sexually assaulted somebody – as a child.

D: Okay.

S: And so, I met him through a female friend of mine – but other than that I didn‟t know him that well. And… so… I was… a little bit eerie just because I know when you break off relationships with people and y- you know if you‟ve got something personal information you‟re not really sure of what they can do or whatever and he asked me if I would go, um, hiking with him like the week before. And… he want- even though we had broken off the relationship he still wanted to go hiking with me. And… so I did go hiking with him but I took both of my dogs with me.

D: Mm-hm.

S: And… um… I told my friends where I was going, how long I‟d be gone, and when I‟d be back, and everything like that, just for my own safety just in case he was a guy who might do something to hurt me or harm me or something like that.

D: Right.

S: And… so anyway – um, cause I didn‟t- like I said I didn‟t know – that I - the only friend I knew of his was my one female friend who introduced us two together and so I didn‟t, you know - know him that well. And… um… so anyway, um… that- that next – that Sunday morning he‟d called me and he told me that he thought communication between the two of us would just drop.

D: Hm…

S: And… I just thought, “that was a real weird thing to say.”

D: Yeah.

S: And… that kind of stuck back in my mind, but I didn‟t have time to pursue it, I just thought, “what does he mean by that? - that communication from you will just drop.” And I thought, “that‟s kind of an eerie thing to say.”

D: Yeah, that‟s- that‟s strange.

S: Yes. And… so… I… then… I - then I got that phone call- phone message from my friend who needed help from me or whatever like that, so I went over her place to go visit her to see how she was doing. I tried calling her first and nobody answered – and then I decided okay, I was gonna

124 go stay over another friend‟s of my house… another friend of mine‟s… house that night, I was gonna stay over her- her – a different friend‟s… a… female friend‟s house that night. And… because they had asked me to. And, the other thing was that my female friend who had asked me to stay overnight, she told me that her roommate had told her that she was gonna be the Angel of Death that weekend.

D: Wow.

S: Yes (slight laugh).

D: Wow that‟s scary.

S: Yes (laughs). So I had all these scary things going through my head.

D: Yeah.

S: (slight laugh). And so when I showed up – when I went up to my friend‟s house – um… the one who was real depressed… the guy was there. And… um… the guy was there, and… um… uh, suddenly she was real euphoric.

D: Mm.

S: And… he- both of them told me to come on in. But at the time I didn‟t really want to be around the guy because the guy gave me the creeps.

D: Yeah.

S: And… um… I had also been a volunteer for the sexual assault center in town.

D: Mm.

S: And… through the sexual assault center (coughs) – excuse me. Through the sexual assault center we had been told there- there had been an increase in uh… there had been an increase in um… usage of the date rape drug – I forget the… Ecstasy or whatever it was…

D: Oh, okay.

S: …um, that was being used around. And… so I didn‟t go in, and… so then I left and I just thought “oh, well hopefully she‟s okay – hopefully he‟s not going to do anything like tear her arms out or anythings out.” I had no reason to suspect he would, but just he gave me an eerie feeling I wasn‟t really sure.

D: Mm.

S: And so… and she had also left a message on my phone saying that she hadn‟t heard from her father - her father who was elderly. And… her father was an elderly person in town, and… his

125 wife was away – um… was away for the two weeks- for the two-week period of time. And… um, she said she hadn‟t heard from her father in a whole week, and… was worried about him. And… so… I then went to a hospital. Um… oh I was gonna go- I was gonna go to a friend‟s - I was gonna go to my friend‟s place, to stay overnight at a friend‟s, but as I passed through there, um, it was a long way to get to my friend‟s house. And so as I passed there - um… I passed a hospital, and this hospital was a place where I used to volunteer through the sexual assault center…

D: Oh, okay.

S: …where I used to go um… meet victims of sexual assault.

D: Mm-hm.

S: And… as a volunteer I had always had positive experiences there at the hospital. Um… that – well, the staff, um… the staff always seemed to be accommodating me and of the victims, and stuff like that and if I asked for privacy they would give me privacy…

D: Mm-hm.

S: …and they would ask for just whatever rights or advocates that I tried to wr- write for the victims there, they always seemed to accommodate me, so I‟d had very positive experiences there. But anyway, so… I remembered that there was a phone there that I always used as a volunteer that nobody else used. And… I never saw anybody using that phone there at all. And so since I still had a ways to go to… um, get to my friend‟s – oh, before that I went to use a payphone. That‟s what it was. It was getting dark, and I went to use a payphone first, to call my friend – um… who was the depressed friend, to see… with the guy – to see if she was okay or not.

D: Okay – just to check in with her.

S: Right. To check in with her. And… um…I didn‟t get any answer.

D: Mm-hm.

S: And… then I went to call my friend from the… um - who I was supposed to stay overnight with…

D: Mm-hm.

S: …and I didn‟t get any ans- an- any answer there- er- there too. And I thought, “well…” – I don‟t remember if I had a key – sometimes I had a key to the apartment or place and I can‟t remember if I had a key to the apartment then or not – or if I – couldn‟t go there when- no answer, just waiting to see if – I don‟t remember right now if I had the key to their apartment then or not. Um… but anyway… um… so… then I decided – I didn‟t get any answer and it was

126 getting dark, and… there were some, like teenage… teenage groups that were hanging around like the payphones and stuff like that…

D: Mm-hm.

S: …and I thought, “this isn‟t such a safe-” they were like 19 or 20 year-olds, that were hanging around, and I just thought, “this isn‟t such a safe place for me to be calling from.”

D: Right.

S: And…

D: Was this a dangerous area, or…?

S: Um, it wasn‟t necessarily known dangerous, but it wasn‟t the safest either.

D: Yeah… yeah.

S: It was just a… place where I should just watch myself.

D: Mm-hm.

S: And… so… um… and especially it was getting dark and so then I went to hospital where I thought, “Ah-hah! There‟s a phone there that nobody ever uses. I‟ll go use the phone there.”

D: Mm. Mm-hm.

S: And… so… I went there and I asked permission to use the phone. And… they let me in, and… I went to use the phone – it was through the emergency department of the, the… um… medical hospital. And… um…. I went to use the phone, and… when I went to use the phone there, um… I tried calling my friend and there was no answer or whatever. And… so… then all of a sudden I got, um… I got even more scared, just with the eerie things about saying this would be your last phone call… uh, with my boyfriend saying that this could be your, um – that the phone call- communication should drop between the two of us…

D: Right.

S: …and, no, just - between the two of us, he didn‟t say between the two of us, he said the drop- he just expected communication from me- from me to him to- to drop.

D: Mm-hm.

S: And… with the Angels of Death, the beacon or whatever, like that‟s when I just thought, “what if something could really go wrong this weekend or what ever. So… I then made some welfare check phone calls from the um… emergency department. And I asked to do a welfare check on… um… my friend‟s father. And… um… the elderly one who she said hadn‟t heard

127 from. And I used to work on a (crisis organization) crisis line – I don‟t want to say the name of it - sorry. I used to work on a- a, on a crisis line – it‟s a telephone crisis line and we used to do welfare checks for people when they were elderly, um… and they didn‟t answer, like their lifeline support. And… so we would do a welfare check on them - we would call the police and ask them to do a welfare check and make sure they are okay.

D: Right.

S: And… so… I did that from the phone and then I did one for my friend. And… then I went to do a third one for my other friend who said the Angels of Death was again– and the operator says, “well, you can‟t do- keep calling. You know - can‟t do welfare checks on all your friends” – and I‟m like, “of course not!” I thought, “what am I thinking of!” And I said “I‟m sorry,” and I apologized.

D: Mm.

S: But, before that happened, I had tried calling the… I had tried doing the welfare check and it had gotten transferred back to another unit of the hospital. And I couldn‟t understand what was happening, so I thought they were intercepting the phone call.

D: Oh… okay.

S: And… so… um… so I thought, “why are they intercepting my phone calls?” And I didn‟t understand that – I didn‟t know, well, in the place where I lived… at the time, you wouldn‟t be – you weren‟t able to dial 911 from a hospital. They would just answer it within – internally in the department.

D: Oh, I see. I see.

S: And I didn‟t understand that that was what was happening.

D: Mm-hm.

S: And… so… um, I got agitated at the phone or whatever. And… I didn‟t throw the phone or anything like that, but um, I just – I was pressing the but- buttons more distinctly.

D: Mm-hm.

S: And… um… and then I went to ask somebody about the phone, and I told them that the phones were cutting out. And… the person asked me “what do you mean that the phone‟s cutting out?” I said something like the – I said well maybe they‟re tapped or something like that. And… so then (coughs). I didn‟t know how to really express myself, but I was – I just said you know, maybe they‟re- they‟re tapped because there was somebody answering from another department and I thought I didn‟t have a privacy of the phone call to make the phone call that I needed to make. And… so I went to use a different phone - out in the lobby. And… so then when I went to use the different phone at the lobby – um… three people came up to me while I was on the phone

128 and I was calling my friend, on the phone to let her know I was going to be late to stay over her place that night – that I was held up.

D: Mm-hm.

S: And… three people came up to me at the hospital and… they said that um, the one– they said “hang up the phone.” And… I just explained calmly that I said I‟m talking to a friend. And… they made a second request to hang up the phone again. And… so I said “oh, well I better do it,” so I hung up the phone the second time. And then the person in front, the women – it was one woman and two males – the women in front who, she- who seemed to be disguised as an RN. Um… she, um… she said, um… she said “we‟re gonna take her back and do a regular procedure - on her.”

D: Whoa.

S: And… all of a sudden I lost it then. I just thought, “what are you gonna do - regular procedure on me?” And I just thought, “regular procedure on me?” And…

D: Yeah, that‟s a scary thing to hear.

S: Exactly. And so with all the stuff with the death and the communication getting cut off I thought, “I‟m gonna die- they‟re gonna kill me!” And I just thought – I had visions of Coma going through- have you- did you ever seen the movie, Coma?

D: No, no I haven‟t.

S: Okay. Well, you might want to see the movie, Coma if you get a chance.

D: Okay.

S: Because, um, I had visions of Coma going through my head - that I had never seen the movie up to that point, but I had read the book when I was in junior high…

D: Oh, okay.

S: …and that book terrified me of hospitals.

D: Mm-hm.

S: And… before I volunteered for the Rape Crisis Center I had written on there that I was terrified of hospitals, but they still accepted me as a volunteer anyway. And I learned to have very positive experiences in the hospitals as a- as a volunteer, not always– not all my experiences were positive. For example, um… at one hospital, they um… the doctor, he was just prescribing medication for her and just was forcing her to undress and do all the stuff against her will, even though I tried to have a choice he was not respectful of her at all and he was like, didn‟t care if I was a volunteer or what.

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D: Ugh…

S: And, it was horrible. So, but most of the time I had positive experiences at the hospital…

D: Mm-hm.

S: …at the Rape Crisis Center, and that learned – me to- to deal with and- and they had told me that you know, most of the victims of sexual assault didn‟t- weren‟t bloody, and it was true. I did have one bloody victim, but most of the others were not, so it was easier for me to deal with. But anyway, so, um… I started screaming as they started saying to do the regular procedure on me. I started screaming because I thought they were gonna kill me. And, the other thing is is that, I had heard at the Rape Crisis Center some talk when I‟d gone to a staff meeting – the volunteer meeting – that there was some suspicious activity going on at the hospital where I was. And… they didn‟t really know what was going on – what the story was.

D: Okay.

S: And I didn‟t know what the suspicious activity was either. And… the other part was, is that ha- had scared me for it was too - was is that there had been, um… some youths, um… from a school district that had gotten into an accident.

D: Mm-hm.

S: And… they had, um… several of them had been flown to um… the hospital where I was at, and one had been flown to a different hospital. And… all of the ones who were flown to the hospital where I was at ended up having liver complications.

D: Ooh.

S: But the liver complications were not revealed right away sometimes. Somet- the- one was, d- was- one was pronounced dead on the spot. And… but the others were all had liver complications, and sometimes they said they didn‟t have liver complications till like one to two weeks later. And I thought, “that‟s suspicious.” You know, and then- then they accused them as possibly having alcohol or drugs involved. I thought, “well, I don‟t know whether alcohol or drugs were involved- were involved or not in the kids.” They announced it on TV that possibly a- alcohol or drugs were involved. And I thought, “I don‟t know if they were involved or not” but I thought, “wouldn‟t they know that right away with liver tests? Why did they not know it until one or two weeks later?”

D: Mm-hm.

S: And I suspected that they were just overmedicated. And that‟s why they were having the liver problems.

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D: Oh. I see. So it sounds like there were a couple of things that had happened fairly recently that made you fairly uneasy about the hospital – in general.

S: Yes. In the few months leading up to that – yes, that case, yes.

D: Yeah. You were still working there at this time, right?

S: I was still volunteering there occasionally. Yes. Actually, we had not- oh that‟s another thing: we had not had volunteers go to that center anymore because they said some suspicious activity, so we were going to other hospitals instead of that hospital.

D: Okay.

S: So, I had not- I had not gone there to volunteer in those past few months before this incident – this happened.

D: Mm-hm.

S: So anyway, they said they were gonna do the regular procedure on me and I started screaming for my life. And… I had remembered that my passport had been stolen.

D: Mm-hm.

S: Um… that my- had been stolen from a car – a separate incident, so I wondered, “well, are they suspecting me as a drug criminal?” Or um, like that or whatever so I just yelled out that “my passport has been stolen!” and they wrote down that they had stolen my passport – that I said that they had stolen my passport, which wasn‟t true.

D: Oh.

S: But, I just was – I just was thinking whatever I could to try to save me, because I thought I was gonna get killed and I was trying to draw attention to me. And I did draw attention to me; I drew a lot of attention to me! (laughs).

D: Mm-hm.

S: And, then they took me back in the room, they ripped off my clothes, they took my vital signs, they put a catheter up me, and they didn‟t explain anything that was going on…

D: Oh my God!

S: Yes. And, my vital signs were reportedly off the wall.

D: Hm. Boy, I imagine you were pretty anxious in that situation…

S: Yes, exactly.

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D: …so that- that would make sense.

S: Mm-hm. Exactly. And then I started screaming for my rights, and I started to say “wait a minute – I want the door open!” „cause I was scared for my life at the time. I knew I had been disrobed and everything like that…

D: Yeah.

S: … and I was concerned about my privacy and usually I prefer the door closed, but I was more concerned about my life than anything at the time, so I just said I wanted the door open. And… one person had opened up the door or whatever, and then they finally got a psychiatric intern. And… the psychiatric intern interviewed me, and… she then asked me if I wanted to drink anything or eat anything and I didn‟t want to eat anything because I thought they could poison me… (slight laugh)

D: Yeah, yeah.

S: … (?) this hospital, and I was just scared for my life at the time, so they petitioned me into another hospital.

D: Okay.

S: And… that‟s where, oh – and another part of, the other thing that had happened to me is that – when I was making the phone calls from the hospital…

D: Mm-hm.

S: … I had seen… um… patients, or I had seen a security guard in the back of the hospital who had a name on his security plate that um… resembled the name of a security guard that used to work for our school district.

D: Okay.

S: And… um… I had made CPS reports to uh, CPS, um, regarding a Columbine-type of act- activity that a child was planning at the school.

D: Mm.

S: And the child had, um… had… what do you call? I‟m trying to think of the word… had, had um… had said that he would escape to… escape isn‟t- can‟t think of the word. But that he would, um… he had worked the security guard into his plan. As, that‟s where he was gonna hide out.

D: Okay.

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S: And, so I wondered if the security guard could‟ve behind it or whether, you know the security guard might of said, “hey kid – you‟re off your rocker; you‟re gonna be arrested.” You know, I have no clue whether the security guard was not or not. But just the fact that it was the same security guard who this kid thought was a safe haven for his plan…

D: Uh-huh.

S: … um… and I saw there at that same hospital. And… um… that had also terrified me. And, I had seen that before they said they were gonna do the regular procedure on me.

D: Okay.

S: And so, that had, um… that I had- when the psychiatric intern interviewed me, um… I told her that I had been making- that there were some children that I was concerned about or something like that over at CPS or something like that which she mixed up – that‟s why- they wrote down that‟s what I was making the phone calls about, but that‟s not what I was making the phone calls about.

D: Oh, I see.

S: Right.

D: Mm-hm.

S: So… but anyway, so they petitioned me into the other hospital. At the other hospital, they – um… after – after my mom came… and… that was the first time that my mom came – after a day or whatever when I called my friend, and my friend told me that, um – you know, get your mom to get out of here – and I told you that story already…

D: Yes.

S: Um…

D: That‟s when that happened?

S: Right. That‟s when that happened. And… um… then after that I asked “how do I get out of the hospital,” and they kept trying to- they kept making it seem like it was going to be indefinite. I didn‟t know anything about the regs, that here in (the state she lives in), they can‟t commit you indefinitely.

D: Mm-hm.

S: It‟s only up to, like, 365 days or 180 days I think – or something like that. I don‟t know what the days are.

D: Okay.

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S: But it‟s, um… it‟s six months to a year or something like that. And… um… at a time anyway. They can keep renewing it (laughs).

D: Oh.

S: But they can only do so much at a time (slight laugh). And… so they kept- the social worker kept talking like it was gonna be indefinitely, and I kept wondering how to get out of the hospital. And… the psychologist there told me, he said the only way you can get out is by take- agreeing to take a medication. And… I said “really? So that‟s the only way I can get out of the hospital?” I thought, “okay – I want to get out the hospital.”

D: Mm.

S: I said, “okay,” so I thought, “can I take Ritalin?” (laughs). I thought, “I have the- the ADHD criteria sometimes, and some of the kids have said it-it- Ritalin has worked, and I was very skeptical of all psychotropic medications…

D: Mm-hm.

S: … um… just because I just thought a lot of it‟s drug company backed and stuff like that, but I thought if some of the kids reported that Ritalin helped them, I thought, “okay, I‟ll try taking Ritalin.” And they said, “no, no, no – Ritalin‟s not an option for you.” (slight laugh). And I thought, “oh, okay.” And – (slight laugh). Um, so… then they tried me on Risperdal for one day. And… I had nightmares on Risperdal that really scared me.

D: Mm.

S: And… so then they tried me on Seroquel, and that just slowed me down for one day. It just really slowed me down and I didn‟t like it either, so then I decided, “no, I‟m not gonna take any medication. I‟m just gonna make a stand-hold, and I‟m gonna refuse to take the medication.” And… so then they court-ordered me to try- to… medication, they put me on Zyprexa.

D: Okay. So did- I‟m- I‟m curious, did they ever explain to you why they took you in the back for the “regular procedure” and treated you that way?

S: No. Nope.

D: That was just the way they did things?

S: I don‟t know. But…

D: That‟s- that‟s very strange.

S: That‟s not been resolved to this day.

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D: Yeah. That‟s- that‟s scary.

S: I did try to do a court case against them.

D: Uh-huh. Yeah.

S: But unfortunately I have screwed up- the court case is still ongoing. But I screwed up in the court case that I had- was overwhelmed by the defendants, and the defendants all… had me- all did summary judgments to me against, at the same time. And… so I didn‟t respond well enough to them – in… my summary judgment, and so I lost that. It‟s on appeal…

D: Mm-hm.

S: …but I didn‟t put enough facts in… the court case, so I doubt they‟ll, um… I doubt I‟ll win it on appeal. So, but anyway I do have that ongoing.

D: Oh. Yeah. Yeah. How long overall, uh… overall were you in that hospital – or the hospital they transferred you to, I guess.

S: Yes. The first hospital, I was in there only for about 8 hours and then they transferred me to the second hospital. The second hospital, um… which – the second hospital I was in there about 3 weeks. 4 weeks.

D: Okay. Okay, and then that‟s when they finally forced you to take Zyprexa?

S: Oh, yes. Yes – and I had – I had had two jobs at the time, and I was planning that night to go and sleep, um… over my friend‟s house and then I was- because it had been such an exhausting day…

D: Mm-hm.

S: …I was planning on going in work late the next day. Um, I mean I wasn‟t scheduled to go in late – I was scheduled to go in at regular time, but there‟s been a numerous times when I was lacking sleep that I would go into work late, and… it was okay with the job I had- I had flexible hours – that I was able to go into work late, and I was – that‟s what I was planning to do – is to go into work late the next day. Um… but because I got hospitalized I had to take a leave of absence from my job…

D: Yeah.

S: …and from both jobs actually. And… um… I couldn‟t go back to either job.

D: So you- they- they wouldn‟t let you come back afterward? After the leave of absence?

S: No, it wasn‟t that- it wasn‟t that easy, it‟s just I was so traumatized. When I was in the hospital, the second- the second hospital…

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D: Yeah.

S: …I saw numerous people from both those jobs that were in the hospital with me at the same time…

D: Oh…

S: …or else visitors, and I was too traumatized. I thought, “they know I was here in the hospital.” I thought, “there‟s no way I‟m going back to the job.”

D: I see.

S: So, psychologically I couldn‟t go back - I was too traumatized to go back to either job.

D: Mm-hm. Mm-hm. Alright, and since then they‟ve had you on various, uh… medications? It- that‟s – on and off, you said?

S: Yes. Mm-hm.

D: Okay, and have you ever received any other kind of treatment?

S: Uh…

D: At any- any other point in your life – before or after that hospitalization?

S: Oh. Before that hospitalization I never- I went to counseling like when I was going through my divorce- my divorce, um… I went through- I went through some counseling to get myself through my divorce, and so I did do that on my own, voluntarily.

D: Okay.

S: And… um… but I uh, never have ever taken any type of medication or seen a psychiatrist before that or anything like that. Oh yeah, the other part of this, too, is that bef- at the first hospital where I was the psychi- psychiatric intern – had asked me- she said she would let me go- oh I had two friends- I called friends- they kept saying “call friends or family members.” And… I refused to call family members.

D: Mm-hm.

S: And… so… um… when, like I said I‟ve never been close to my family members and I didn‟t want them to know anything was going on. And… um… but I called a friend eventually at a certain time when I figured a friend of mine would be home, and I called a different friend who I‟ve not talked about yet. Um… and… she came- she and her roommate came to see me there at the hospital. And… the psychiatric intern said that she was willing to let me go – release me to my friend if I promised to go see the psychiatrist the next morning.

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D: Mm.

S: And… at that time I said… well, I- I wanted to go to work the next morning - I didn‟t- I didn‟t want to go to see a psychiatrist the next morning, and I thought also I wanted to check around, „cause I thought, from my understanding, most psychiatrists, anytime somebody sees a psychiatrist they‟re forced on medication. And… so I thought… I didn‟t want to necessarily do that. And I thought I wanted to have a- check around, I said “can I go within next week?” - she says “no, you have to go tomorrow morning, the next day,” – I said “well where do I go?” And she named an agency, which is a public agency in the town- and it‟s a crisis intervention and they involuntarily hospitalize people all the time.

D: Mm-hm.

S: Um… th- that – she named me that one agency is where I could go. But then at that time I decided- you got- and… I said “what happens if I say no?” and she says “then we‟re gonna… I‟m gonna submit you to the judge, and… the judge will decide whether you stay in the hospital or not.” And I thought, “okay – do that.”

D: Mm-hm.

S: And… my friend said, “ah – what are you doing? No, no no! Come back with us!” And I said, “No, no, no – „cause I thought I would have a hearsay- another side of the hearing. But…

D: Right. Right.

S: … in (the state she lives in) with the first petition they just do it themselves and you don‟t get a say until weeks later.

D: I see.

S: And… I didn‟t know that. So… I – I um… based upon that - um… I had made the choice to stay in the hospital which was the wrong choice at the time. „Cause I didn‟t know that.

D: Mm-hm. Yeah, yeah, it sounds like there was, um… a lot of things they didn‟t explain about how the process would work.

S: Right, exactly.

D: Alright. Um, so you said that – oh, you had mentioned you had gone for counseling for divorce just a couple of times, was it?

S: Um, I had gone for… I- my divorce took four months to- to process because there was a waiting period, and… I was busy through school and stuff like that. So I went to counseling for four months during my divorce…

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D: Okay.

S: …which had- which had been about eight years earlier.

D: Mm-hm.

S: And then I had gone to counseling for one time counseling session with the guy who I was dating before I broke up with him before the first hospitalization happened. Um, to just one time counseling – because I took him – because I thought – I thought that he was- I asked him does he do pornography? And… he just kind of looked at me (unclear word) like, “how do you know?”

D: Oh.

S: I just thought- I just had kind of a gut reaction like, maybe he does. And I went in to see the counselor – he and I went to see the counselor together. And… went to look at our options, and I didn‟t break off with him just for the pornography, and he agreed to go to the pornography – he agreed to continue seeing the counselor to work with the- cut out the pornography. And, but then I later cut off with him because I found out about the sexual assault.

D: Right. Right. Okay… Um, so… since the… your hospitalization you‟ve seen psychiatrists just to- that- that‟ve prescribed medication… and is that- is that all?

S: Um... yes. Yes. However, um… a couple years ago I found out that through my work I was eligible for a little bit more disability money…

D: Uh-huh.

S: …and… um… so I decided to apply for it and I found out that in order to do it you have to see a… psychiatrist, and… uh, you have to follow the recommendations. So I called ever psy- practically ever psychiatrist in the phone book, to find if one would not require medication.

D: Yeah, yeah.

S: And… I went to see one psychiatrist who lived far away from me, and I was even calling up to two hours away from me (slight laugh). And… I went to see one psychiatrist and she said, no she- she - she doesn‟t require people to take medication but then when I went to see her she said it‟s only for eating disorders…

D: Oh…

S: …and I didn‟t have an eating disorder (slight laugh).

D: I see.

S: And, um… but she said otherwise she requires medication (slight laugh). And… so, but eventually I did find a psychiatrist who doesn‟t require medication. So I have seen him and I go

138 to see him… about - it was every- once every month but now it‟s about once every two months. And… he does dream analysis with me.

D: Okay.

S: Um… and he does basically supervision – I go, I – for the past two years I‟ve been seeing my- I‟ve been seeing counselors, and I‟ve switched counselors, gone to- with Medicare because the- my previous counselor didn‟t take Medicare.

D: Mm-hm.

S: And… gone to see a counselor for Medicare to try to deal- to help me deal with the trauma of the hospitalization. Um…

D: Yeah. And is that the psychiatrist? The once a month psychiatrist that you see? Or it‟s in addition?

S: No he doesn‟t take – the psychiatrist doesn‟t take Medicare.

D: Oh…

S: So I pay for that out of my pocket.

D: I see.

S: Um… and the Medicare is only 50%. They pay for only 50%, and 50% out of my pocket, but I go to the counselors, um… for 50% um… I go- I go to see a counselor once a week…

D: Okay.

S: …to help me deal with the trauma of the hospitalization.

D: Okay. I see.

S: And the trauma- the hospitalization – not only what I told you of the experience traumatized me a lot, but um… just the fact that every time I was in the hospital I saw so many people who I knew. I‟ve had many different jobs, and in the community and I‟ve known a lot of people in the, um… social services area and education area…

D: Yeah. Yeah.

S: And so… I have- well, seen a lot of people and it has traumatized me so much, being that they know or they‟ve seen me in as an inpatient – um… in the hospital, so…

D: Right. Well that sort of relates to um… one of my next questions, but – um… I‟ll get to that in a second.

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S: Okay.

D: Um, but for… the next, ah– all- all of the rest of the questions, um… I'm gonna ask you, um – the things that they‟re referring to are any and all experiences that you‟ve had, uh, as far as treatments. So you can talk about either your experience with psychiatrists, or in the hospital, or with counselors, so… it‟s up to you.

S: Okay. Okay.

D: Um, I just – it can apply to any of that.

S: Okay.

D: Alright. Um… well, the first question‟s just kind of general is what your experience of various kinds of treatments are, how they‟ve affected you, um… psychologically, uh… have they been helpful, have they been not helpful, um, just kind of in general.

S: Okay. Well, the first thing is, is that I think that all treatments should be voluntary.

D: Uh-huh.

S: And… I think that treatments should be when people – when you see somebody who may need treatment like my friend who was depressed – I think it‟s good for us to recommend to others, for people to recommend to me, ay, like my boyfriend, he‟s recommended to me, “I think you need to go to counseling, you need to keep going to a counselor.”

D: Okay.

S: And… so I think it‟s good that people recommend to each other that there should be treatment but I also think it should ultimately be voluntary. And, because I think that if the person‟s not helpful enough then it only makes things worse.

D: Yeah, yeah.

S: So, um… when my treatment has been voluntary it‟s been positive.

D: Mm-hm.

S: Um… but without the medication. I was seeing a counselor last year who… um… I was seeing a counselor last year who… um… on Medicare, who I- who I went to see, and she all of a sudden wrote me this letter saying “I won‟t help you anymore unless you take medication”… and didn‟t give me any closure or not at all. And… I had – I had told her some of the trauma that I‟d had with associations with her…

D: Yes.

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S: …and she says, “well, do you still feel like seeing me?” I said, “Yes. If you‟re willing to talk about it I‟m willing to see you.” And I told her, I said “Yes,” I said “I feel good we can talk about this.” And I told her I said, “But if you ever feel like you can‟t see me then please let me know.”

D: Mm-hm.

S: I said, “But with this trauma,” I said “I- I‟m willing to still work it with- with you.” And… um… she said, you know, “Good.” But then all of a sudden I got this letter saying she wouldn‟t let me… she wouldn‟t see me unless I took medication. And she wouldn‟t even – she didn‟t even tell me in a session in order for us to talk about it or discuss it or say why or anything like that. And I think I know why – um… I was redeveloping reoccurring schizophrenia. And… um… but she ju- all of a sudden I got this letter, and… um… I think that that was just the wrong approach. I think she should have had some closure with me. But other than that it had been positive up until I got the- point I got that letter.

D: Mm-hm. And then it, it kind of moved into the non-voluntary – involuntary kind of…

S: Well, „cause she cut it off so it wasn‟t un-voluntary…

D: Yeah. Yeah.

S: Right, because she was trying to force me to take medication. Exactly.

D: Right. Right, your choice had been taken away… in that- in that situation.

S: Exactly. Mm-hm. Exactly…

D: This - this is the same one you have been seeing to deal with the trauma of hospitalization? Or has th- have… has it changed?

S: Yes.

D: Okay.

S: Mm-hm. And so I had to change counselors, so I‟m seeing a new counselor this year for- for that, who has so far not required me to take medication.

D: Oh, I see. Mm-hm. But you had said that um…

S: But, however, these counselors all have this bias, like right away, they each have this bias; even when I first work I have to say, “Are you willing to work with me without taking medication?” They say “Well, we‟ll try it and see how it goes.” But they say “All schizo- people who I know who have been diagnosed with schizophrenia, they all need er, medication.” And each one of them has usually only worked with one that‟s been on medication, and they say,

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“Well, they said it was helpful.” And so they use their case study of one to say that medication should work for all people.

D: Mm… right. Right.

S: And… that‟s, so that‟s – it‟s been harder to start the counseling because of the- the biases these counselors have.

D: Yeah. Um, you‟d also, you‟d mentioned that currently you are taking medication – were forced to as well, right?

S: Yes, I‟m court-ordered again, yeah.

D: Okay, so… but at the time… when you were seeing the other counselor you weren‟t.

S: Right, exactly.

D: Okay. Just wanted to make sure I got that right.

S: And… yes, exactly. Uh-huh. Now, the other thing is too, is that the medication I‟m taking is 25 – oh, so the 25 mg. of Haldol that I‟m taking…

D: Yeah.

S: …I forgot to mention, it‟s an injection, it‟s a once a month I get.

D: I see.

S: Um… and I choose to go that way because that way I don‟t have to orally succumb to their medication.

D: Mm-hm.

S: And… um… the injection I only have to take it one time so I don‟t have to worry about it all…

D: Right.

S: …and I don‟t have to be accused of not taking it or taking it or anything like that, just go in their record and they know I‟m compliant. So…

D: Yes. Okay. So you had mentioned that the voluntary treatment you‟ve- you‟ve had has been generally positive; the involuntarily- involuntary treatment, not so much…

S: Exactly.

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D: Um, what are some of the positive things, um, that you have experienced?

S: Okay. Um, positive is the counselor I saw going through my divorce…

D: Mm-hm.

S: I actually saw two different counselors; the first counselor I saw, I went with my ex-husband to… um… to see- I convinced my ex-husband to go see um, see a counselor for the divorce or whatever, and she convinced me to get a divorce…

D: Okay.

S: …which I didn‟t really want to consider, but my situation was such that um… my husband had committed incest, and… so it was also infidelity and incest and the family member wasn‟t gonna go away…

D: Yeah.

S: …and it was something I realized I couldn‟t live with – I couldn‟t live with myself, and… so she basically said you‟re gonna have to, it seems to me that what you really need and want is a divorce, and… it was good that she was frank with me – I didn‟t want to hear it, I cried. I biked- I biked all the way to the counseling session, I biked all the way home and I cried all the way – tears and biking all the way over the fact that I should get a divorce, but it was the best thing for me.

D: Right.

S: So… with counselors being confrontive like that, but after they build a relationship. Um… actually, I had only seen her like, two or three times, so we really didn‟t have a good relationship, and after that she was too far away, so I went to see another counselor who specialized in incest.

D: Okay.

S: And that was the counselor I saw for my divorce – going through the divorce.

D: Okay. So hearing that recommendation from the first counselor was hard, being that you‟d only seen her a few times.

S: Yes. Yes. But um… but she was right, she was accurate. And I also decided that the first counselor didn‟t fit my style, because she wanted me to try to be more… I‟m- I‟m- I‟m a very liberal person in political ideology…

D: Mm-hm.

S: … but I‟m a very conservative person in terms of social, um… in my own social arena.

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D: Okay.

S: I don‟t drink alcohol…

D: Mm-hm.

S: … and… I uh… I… in general don‟t like to date people, I don‟t have sex in my relationships when I date…

D: Mm-hm.

S: …until marriage. And so, I have a social concern with that. And that first counselor I saw for divorce was trying to get me to be more liberal sexually…

D: I see.

S: …and I didn‟t like that and so I changed counselors, but this is what I like and voluntary – I had the right to go, and I had the choice, the opportunity to go in the phone book and call somebody, who – and also that counselor didn‟t have experience with incest.

D: Mm-hm.

S: I had the opportunity to go in the phone book, look for somebody who dealt with incest, ask around, and find somebody who had- who was able to accept somebody with more conservative sexual preferences.

D: Right. Right. You weren‟t just stuck with who you had.

S: Exactly. And that was wonderful; it was very powerful; empowering.

D: Yeah. Mm-hm.

S: And so I found a new counselor, and I went with her, and… um…I saw her, and… um… she um… one of the things she convinced me is that I was abused – physically abused by my husband - ex-husband.

D: Mm…

S: And… um… I knew of one incidence where I had been physically abused. I knew that was for sure… that I had been – that when I tried to confront my ex-husband about the incest, he um, he smacked me across the- across the fla- face until my nose bled.

D: Ooh…

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S: And I was blocking the door for him to leave, so I blamed it on myself because I wanted him to answer my question, and for me that was more important than getting hurt.

D: I see.

S: Um… but, anyway so I knew that that was an example of physical abuse and that he should not have um… he should not have hit me regardless, even when I was blocking the door.

D: Mm-hm.

S: But the counselor, what she did was she tried to emphasize; she said, you know, “the next time that something like that happens, you need to keep your eye on the exit, the door - don‟t block the door you need to get away because people do get killed…”

D: Right. Right.

S: “…and hurt, and more- even more serious stuff can happen, and- you know, than that.” And… um… my nose may have been broken. I did go to the medical room and they wanted to X-Ray it to see if- but I didn‟t have health insurance at the time… and… I said “hey look, if you X-Ray it what can you do if I have a broken nose?” They said, “No. We‟ll just tell you it‟s broken.” I said, “Well, you can‟t do anything for it anyway, well I‟m not going to pay for it.” (laughs)

D: Huh.

S: So… I have no idea if my nose broke or not (laughs). Um… so anyway, but um… another positive thing about the um… the- the counseling was that… there was a time with a similar type of thing is I was ask- I was… trying to get him to answer questions about the incest relationship again. And… he was in the car and I was on foot, and… I was blocking the car from going and he ran over my foot. He ran over my foot with the car. And… she convinced me that was physical abuse.

D: Mm-hm.

S: And, so that was very helpful to me again. And so two things that were helpful: one is she was confronting me that it was physical abuse, that it was a bigger incident than I was allowing; another thing is, is to keep my eye on the exits.

D: Yes.

S: And… um… there was one other physical- one other incident of physical abuse where he did bang my head on the- against the door, and I did keep my eye on the exit, and so I used that strategy to keep my eye on the exit and his brother came out and removed him from me in order for me to leave and escape from the house at the time.

D: Mm… Mm-hm.

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S: Um… and so that was helpful. And she was also very helpful in talking about the incest, and helping me go over with yes, the incest you make- makes you feel horrible, and just sympathetic about the different feelings about the incest and…

D: Right. Right.

S: …and educating too about what incest- that the profile of incestors is often very different than the profiles of molestors and the profile of others who have infidelity relationships.

D: Mm-hm.

S: And… I also did a lot of library research on my own about incest, because I wanted to know as much as possible, and that was also very empowering to just read the psychological literature on incest.

D: Yeah. Yeah, I can see how that would be. Um, with regard to medication and- and some of the other involuntary treatments, um, were there any positive, um… aspects about those treatments for you?

S: Okay, well… the one time I was forced to join a group…

D: Yeah.

S: And I got to pick which- actually, the first time I was - not the first time - the second time I was court ordered for treatment, um I asked if I could attend groups because they were actually letting me go without medication for a while.

D: Oh, okay.

S: So I said, “oh,” I said “can I join groups, then?” And they would not allow me to join their groups.

D: Oh.

S: Yes. And I think because they were scared for the- me to tell others that I was not on medication.

D: Oh, wow.

S: (laughs) And at that time I was- I was very much depressed because I wanted to join the groups at that time…

D: Yeah.

S: …because I wanted to see what other people‟s experiences were.

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D: Mm-hm.

S: But then later when I was on medication, when I was court ordered on medication, they ordered me to attend a group and I didn‟t want to. I didn‟t feel like attending when I was on medication.

D: Mm-hm.

S: And… so I went to join the group and the only positive thing that came out of it was I got to hear about other people‟s different experiences.

D: I see. Yeah.

S: But what I learned from their experiences too is that most of the time it‟s- a lot of the time it seems that there was the placebo effect. A lot of them say, “oh yeah, this medication has really helped me.” And then, when they hit down in the dumps, or something would go wrong or they‟d have a spasm or something like that…

D: Mm-hm.

S: …then they‟d say, “oh, well the doctor said the medication stopped working, and so I need to be switched to another medication, I thought that (unclear)…

D: Right, it‟s all just kind of pinned on the medication.

S: Exactly.

D: Yeah, I see. Alright, you‟ve mentioned a few of the negative things that have- have come out of uh… you know, the hospitalization… some of the treatment. Is there any- any other negative aspects of any of the treatment you received that you want to talk about?

S: Well, the number one, the most negative thing about all the treatment was is just the- the people that saw me there as an inpatient hospitalization.

D: Mm-hm.

S: And… that has to do with again because I was in – I‟ve worked so many jobs in the community, that I know so many people in- in the social services field…

D: Yes.

S: …that um… that was stigmatized, so I think that was more traumatic for me than it may be for other people.

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D: Yeah, that‟s- that was the next thing I was going to ask you about actually, that I referred to earlier, is- is stigma, and/or any kind of negative stereotyping; either of people seeing you or because of a- a diagnostic label you received… or anything like that.

S: The combination, yes…

D: Yeah.

S: Yes. Stigma was very much- oh, another thing that was very negative too is that they then diagnosed me as seriously mentally ill against my will. They did a fraudulent evaluation on it, and I do admit that I fit the criteria for it now, but at the time I fell through some loopholes and I didn‟t really fit the criteria…

D: Mm-hm.

S: …um, because I‟d been out- back working at the job and I was functioning for most- I was not seriously mentally ill for most of the six months. It was for the rest of the six months. And they were forcing me to go to a… a- um… a building which dealt with only seriously mentally ill people…

D: Mm…

S: And that I thought was wrong, where before I was allowed to go to one where there was either general mental health or seriously mental ill and you couldn‟t tell who…

D: Yes…

S: …wh- who was on which plan unless people volunteer the- say the information.

D: I see. So it was just kind of, uh… common knowledge that a certain building was…

S: Yes, it was labeled that.

D: …labeled as seriously mental ill, and if anybody saw you going into that building, then they would- would come to some- some judgments?

S: Mm-hm. Yes, exactly. And I take the bus and walk most places, and bike most places…

D: Yes, yeah.

S: …I like, walk so it‟s even more obvious when I‟m going to places. Well, I guess people who drive cars too if there car‟s noticeable- noticeable, it‟s also noticeable that way.

D: Okay. Um…

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S: So that‟s where I think that that can easily be integrated, and there are some places in town that do integrate them and there are some that don‟t.

D: Yes. Yes. Mm-hm.

S: And… that makes a huge difference.

D: Okay. Um, any other stigmatizing experiences you‟ve had, or anything…that you can think of.

S: It‟s stigmatizing being court ordered for medication. This is where I‟ve had to- each time when I‟ve been court ordered I‟ve had to make the choice. I thought, “Do I- do I voluntarily take the medication so I don‟t have to be stigmatized on the court ordered medication…”

D: Right.

S: …because it‟s such- such a stigma to be on court order for medication „cause you‟re take- taking away your- part of your competency. You‟re- you‟re, you‟re labeled as being incompetent in the area to make your medical choices.

D: I see. I see, yeah, yeah.

S: And… um… each time I‟ve gone with the court ordered treatment instead of willingly taking the voluntary medication, but that has been a huge stigma, and it‟s been hard for me to swallow.

D: Right. That‟s, uh, wow, what a Catch-22 that must be…

S: Mm-hm.

D: …to kind of voluntarily go along with what people are saying…

S: Yes.

D: Or… or… stand up for what you believe in and- and receive this label of- of not being competent to make a decision.

S: Exactly.

D: That‟s uh…wow.

S: Mm-hm. And many people in the hospital, they just take the medications. And… um… in fact when I was in the hospital, I mean there were many patients who told me, they said “just take the medication.” They said, “You- you just want to leave, you‟ll show them you‟ll try anything and just listen and just say, yes, yes, yes to everything. Then you go out you can just stop taking it and do whatever you want.”

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D: Right, right. Yes.

S: Um… but I just wanted to stand for my principles and so it was hard to get the stigmatization for it.

D: Yeah.

S: And… um… the other thing is, is that one coun- the counselor that I saw for going through my divorce for incest, she has worked with a lot of patients. She has worked with more than just one patient who has been diagnosed with schizophrenia. She has worked with a lot of patients who‟ve been diagnosed with schizophrenia.

D: Mm-hm.

S: And she‟s worked with a lot of patients who have been in the mental health system. And she's told me that she‟s worked with so many patients who‟ve been in the mental health system who say they take the medication and they mark on the calendar how many pills they have, and they mark what day to get the refill, so they mark on the calendar what to call in and they never take the medication – they just say they‟re doing it to comply with it, so…

D: Wow. Yeah, that‟s… yeah that‟s not a surprise to hear that. And then, I… I guess that kind of thing never gets taken into consideration when people talk about medication versus non- medication and outcomes, you know…

S: Mm-mm. No, because they- they put down those people here are perceived by the system as complying and taking their medication and doing well and everything like that.

D: Yes… yes.

S: And then other thing is, is that, um – why I think a lot of the placebo effect is, because when you‟re taking the medication - like right now I‟m going in for the monthly ject- injection, all the people in the mental health system say, “oh, you look so well! You look so great, you‟re doing so well” and everything like that…

D: Uh-huh.

S: …and they‟re so positive and friendly to you, where… when I‟m denying to take the medication before the court ordered treatment, they just – pain in the neck…

D: Mm-hm.

S: and they- they put up- they- put up- they, they even make up stories, they put false accusations on you, and they- everything like that, and then it‟s just like night and day between how they treat you.

D: Wow.

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S: And so, that is more than just a placebo effect - it really is – so I kind understand people who- who have diagnoses of schizophrenia or bipolar or- or other stuff, and who find that medication really works, well a lot of it may be how the mental health system treats them, because they‟re treated- they treated so differently.

D: Yeah. Yeah… yeah, that is- that is more than just a placebo effect. You‟re- yeah, getting treatment in a completely different way.

S: Mm-hm. Yeah. And family members do too because, for example my mother, once I was taking the medication when I was divorced she was like, “oh, you‟re looking so much better!”

D: Right.

S: And I was like, “Oh!” It‟s like my mom (sighs) – she doesn‟t even know (slight laugh)

D: Um, do you feel like the medication has had any effect on you, positive or negative – um, other than the placebo effect I guess?

S: Um… no.

D: No, just kind of… wh- not one way or the other.

S: It‟s- no it‟s been negative, it‟s- it‟s had negative affects, sorry… I wanted to say.

D: Oh, I see.

S: I‟ve- each medication that I‟ve been on I‟ve had different medicate- I- I mentioned I was on Zyprexa first, and then Haldol and Prolixin. Prolixin was the worst for me.

D: Okay.

S: Prolixin- my jaw became deformed, and my… which is- it‟s looking normally now, but it became- it locked up like TMJ or whatever like that…

D: Oh, yeah. Yeah.

S: It became like, um… like Tetanus or whatever. It just locked up and my whole face became deformed and my boyfriend told me like I looked really, really ugly.

D: Oh…

S: And… um… it was really painful. It was very, very painful.

D: You- you‟d also mentioned that Risperdal gave you uh… nightmares and- and uh – that, that large dose of Haldol you received just kind of knocked you out.

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S: Bad nightmares, right... Yes. Mm-hm. Exactly.

D: Yeah. Okay, so it sounds like the side-effects, or quote side-effects have been extremely noticeable, but the uh… supposed benefits haven‟t really been there.

S: Well, the only benefit I‟ve had is when I‟ve been on the medication, I‟ve been able to sleep- sleep a little bit better sometimes.

D: Uh-huh. Okay.

S: But… but before I got hospitalized the first time I was always able to fine, I never had a problem sleeping

D: Mm.

S: It‟s only been since my first hospitalization that I‟ve had problems sleeping. (long pause). And like I said I was sleep-deprived before the first hospitalization, but that was because of my work schedule.

D: Right, right. Had you ever had any um… any other problems before that hospitalization? Before…

S: What do you mean problems? I…

D: Well, you mentioned that a lot of what you‟re going to counseling for now is- well, the main thing is trauma from that hospitalization.

S: Yes, exactly.

D: Um… was th- was there any… any… either sleep problems or um… any- anything before that?

S: Mm-hm. Well, like I mentioned, the domestic violence and the incest. Those- that I did for my divorce, went through that. So, but that was it. That‟s the only thing I‟ve gone to either counseling or treat- the treatment for.

D: Mm-hm. Right. Okay. Alright, um… the other thing I‟m- I‟m… oh, did you have something to say?

S: Go ahead; oh you‟re very sensitive - you‟re catching on to that, that‟s good (laughs).

D: Oh (laughs).

S: I was gonna say something, but then I forgot it. Sorry.

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D: Oh, okay. Well if it comes up, just let me know.

S: Okay, thanks.

D: Um, I was, uh… let‟s see, what was I gonna ask? Oh, um, in what ways have you experienced um… discrimination of any sort, because of um, having a, a label, or because of… you know, things that you were going through? By discrimination I mean anything, you know, being - well some you‟ve mentioned already; being uh…treated unfairly or being denied rights or services, um… but also just so- any kind of social exclusion or um, even verbal or physical attack; anything like that.

S: Um… it‟s mostly the stigma that I‟ve experienced a lot. And… just, where I have family members that say, “Oh, well you‟re taking the medication. You‟re doing so well now.”

D: Yeah. Yeah.

S: And, it‟s their perceived their perception because their biased by the literature.

D: Mm-hm.

S: And, I think that‟s very unfortunate.

D: Yeah, I would agree.

S: And they‟re so biased by the medication industry and the- and I have- I have a sibling who says, that would never take medication for him or herself, but uh… thinks that I should be on medication. And that‟s very hurtful to me.

D: Wow. Like a double standard there.

S: Mm-hm.

D: Okay, so no- nothing other than- it‟s mainly the stigma then. Not um… a more active kind of being discriminated against.

S: Well, I have had um… one co- (pause). I was- At one court building I was at, I was arrested for trespassing. And… that‟s where I made a phone call. That‟s where I was… (coughs) Okay. I did not have schizophrenia before the first hospitalization. But, the first- after the first hospitalization I developed schizophrenia.

D: Okay. And what- when you say developed schizophrenia, what- what exactly developed for you in terms of symptoms and problems developed?

S: Okay. Yes. Problems developed. Because of that first hospitalization- them telling me- th- them talking to me- the fact that I was never gonna get out and it seemed to be indefinite…

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D: Yeah.

S: …and with all the incidents like the Angel of Death and cutting off the communication, everything like that…

D: Yeah. Yeah.

S: …I had a lot of conspiracy theories of who was involved.

D: Okay.

S: And, trying to get me on medication and stuff like that. And… the boyfriend who I‟m now dating… he works in a field which does a lot stuff with computers and electronics.

D: Mm-hm.

S: And… so… and- an- and- science stuff that‟s beyond my knowledge b- by far.

D: Yes. Yeah.

S: And… um… so I have attributed to him that he‟s had all sorts of powers to be able to control me and manipulate me.

D: Mm-hm.

S: And… um… I have attributed to the government - has- has um… tried to um… been after me to try to get me hospitalized…

D: Okay.

S: …and which has ended up happening is then I end up getting re-hospitalized (laughs).

D: Right. Right.

S: Unfortunately it‟s end up being a self-fulfilling prophecy unfortunately…

D: Yeah, like a cycle. Yeah. Yeah.

S: A cycle, yes.

D: So all of these kinds of um… these kinds of things have been mainly triggered by that- that hospitalization.

S: Yes. Exactly. Primarily the first hospitalization, since- since then, more. Yes.

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D: I‟m- I‟m curious – you don‟t have to answer this if you don‟t want – I‟m- I‟m wondering how old you were when that first hospitalization occurred?

S: Just say late 30s.

D: Okay. That‟s fine.

S: I was actually (she states her specific age) but if you can say late 30s, that‟ll put it down.

D: Sure (laughs).

S: Thanks (laughs).

D: Okay. Alright, now I‟m just going to ask you a few more- few questions about empowerment… um… and- and to the con-…

S: Okay, well and actually I- the one thing that I want to say that I keep forgetting…

D: Oh, okay.

S: … is that in (the state she lives in), they do not require a finding of dangerousness in order to hospitalize you.

D: Oh, really?

S: Yes.

D: Oh wow!

S: And I have never been hospitalized for dangerousness.

D: Okay.

S: I have always been hospitalized under persistently, acutely disabled.

D: Persistently, acutely disabled. Hm.

S: And I think that violates the Americans with Disabilities Act, in my opinion. And I haven‟t…

D: I would think so, yeah. I- I didn‟t even know that there were states that had laws like that.

S: Yes.

D: Wow.

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S: (Another state) I believe also has that the- just if you had a re-hospitalization from what I read, they can re-hospitalize you without having dangerousness too. And (another state) I think also does it without hospitalizing.

D: Okay.

S: Most states have a finding of dangerousness.

D: Yeah, that‟s what I thought.

S: But there are a few states that don‟t.

D: Wow, I thought the finding of dangerousness was pretty much universal, that that was the main criteria.

S: Mm-hm. No. Right, and I… so I have never been hospitalized- sometimes they put me, like the first hospitalization they put me down as dangerous to others and dangerous to self, but they just put based on bizarre behavior.

D: Okay.

S: They didn‟t have any facts or anything like that.

D: Yeah.

S: And… then the court hearing, they did away with it, and said “no, she‟s only persistently, acutely disabled.”

D: Mm…

S: So each time the court has found me to only be persistently, acutely disabled, even thought there‟s been sometimes they‟ve alleged other things at first.

D: Mm-hm. Okay

S: Like there was another time they alleged me to be danger to self because they asked me “have you ever thought about h- hurting or harming yourself?” and I thought “well I thought about staging a fast like Gandhi” and they put “ok, danger to self.”

D: Oh, wow.

S: But then um… (laughs). And I thought, “that‟s not fair,” „cause I thought “Gandhi wasn‟t hospitalized,” you know? (laughs).

D: Yeah.

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S: And, um… he was jailed, though, unfortunately.

D: Right.

S: But, anyway… um… then, um… then uh, I was gonna say, um… then when the appeal came, the appeal said that, no danger to self. It wasn‟t danger to self because fasting wasn‟t something imminent, uh, to danger to self, so it wasn‟t danger to self.

D: Mm-hm. Mm-hm.

S: So, I was- I was vindicated of that. And so I‟m really glad that I don‟t have to speak of the dangerousness component with it.

D: Yes, yes. Wow that‟s- that‟s really significant. I didn‟t, I didn‟t realize that - that those uh, laws were, were different.

S: Mm-hm.

D: Um… oh, okay, yeah, so I was saying, uh, the next few questions I‟m going to ask are, are about empowerment and disempowerment.

S: Okay.

D: Um, and that‟s something you‟ve brought up a couple of times already, so if it‟s just, you know - if there‟s, there‟s anything new to add. I‟m wondering what ways your experiences in the mental health system, um, have led to you to feel more empowered in your life. And that would mean, and you can take that as- as any way you want, but some examples might be either able to make your own choices, able- ability to express your voice, or participate more fully in society or in your life. Any of those things, yeah.

S: None of those- all those ways I‟ve felt more disempowered.

D: Okay.

S: All those ways that you mentioned.

D: Mm-hm. Mm-hm.

S: Um, the only way I feel more empowered is, is that when I was a child I wanted to know what it would feel like to be black, and I had used to dream of having my skin colored black…

D: Mm…

S: …because I wanted to feel the societal discrimination, „cause I had- I had empathy for what they were going through, with the discrimination.

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D: Right. Right.

S: Um… and I was sensitive to that. „Cause I was sensitive in elementary school where my friends who were just as intelligent, or more intelligent, than I was, and they were not- they were not- they were not recommended for the honors and gifted programs like I was.

D: Right.

S: And I never qualified for the gifted programs, but was retested and tested and tested. And… where my other friends were not. And… you know I think it was only because I was white that I was retested for it. And… um… and so I had often wanted to be black, and I had never- and I had al- always considered like Michael Jackson dyed his skin white, I always wondered about doing plastic surgery to dye myself black.

D: Mm-hm. Just to see how people would treat you differently.

S: Yes. Exactly. And… um… and then when my- when I had a family member diagnosed, when I had a cousin diagnosed with schizophrenia, um… I wanted to know what it would be like to be schizophrenic.

D: Uh-huh.

S: And I had a friend in college who worked with schizophrenia, and she just told me medication is the cure, it‟s the only way to go, then I was really sus- skept- I was really skeptical, because from my own experience with medication… about um… medication being the only way to work with schizophrenia, so I wanted to know how it was like so the w- only way I felt empowered is like, “Hey, wonderful! I got the label schizophrenia!” (laughs). So, heh, um… with that I feel empowered in a way that I got to know what it‟s like to be schizophrenic…

D: I see.

S: …and to feel the discrimination in society and have everybody turn against you. You know, your family and society and everything like that, and being labeled and everything like that and um… like my boyfriend. He‟s had people tell him to cut off the relationship with me once they found out that I was diagnosed schizophrenic.

D: Oh, wow.

S: Yes. He‟s had a good friend tell- tell him that.

D: Wow, that‟s- that‟s interesting that um, the main way that you felt empowered is just being able to take that other perspective and know what it‟s like for people who experience racism or any kind of discrimination, really.

S: Mm-hm. Yes, exactly.

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D: Alright, um, are there any other examples of uh… of any other…

S: And I want- do want to say is that I was in college I was diagnosed with dyslexia.

D: Okay.

S: And in- in high school I was diagnosed- I went to a special reading class in my senior year in high school. I always did well and I took AP classes.

D: Mm-hm.

S: But I had slow reading problems. It would take me forever to read things. And so I went to a reading school, and I went to an eye institute to have eye exercises work on. Um… to work on my eye exercises- eyes to get them to function better closely.

D: Oh, okay.

S: And, um… so I have felt discrimination in other ways with, you know, with dyslexia and struggles with that.

D: Right.

S: And as being a female in sports and stuff like that I‟ve felt some discrimation…

D: Yeah. Yeah, I can imagine.

S: … so it‟s not like I haven‟t experienced it. Um, especially with my um… wanting to be a tomboy and not having athletic ability, I‟ve experienced a lot of discrimination in terms of um… not being allowed to participate in sports and stuff like that, that I‟ve wanted to participate in. Um… but anyway, um… but the schizophrenia is more- the mental illness is more closer what the blacks had experienced up to the 1960s because you‟re just segregated in society…

D: Yes. Yes.

S: …and you know, back in slaveries they were just blamed for being- everything being wrong and it was blamed on them being black and being stupid, inferior… and that‟s what it‟s like being with- diagnosed with schizophrenia is you‟re labeled as being able to- you‟re not being competent in the um, to make you own medical decisions.

D: Mm-hm.

S: And… um… not being to- I- I was- I was told I would have to take medication for the rest of my life.

D: Right. Yeah.

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S: And… also once I got the diagnosis of schizophrenia, at first I wasn‟t told that um, I wouldn‟t be able to hold a job. They said if you just take medication then you‟d be able to hold a job, and they were looking at Bipolar for me more, but then after that – and I‟ve had a number of people say “You can‟t be schizophrenic because you‟re too high-functioning, so you must be Bipolar instead.”

D: I see.

S: … so I‟ve also had the diagnosis of Bipolar. And if I am Bipolar I‟ve been Bipolar since childhood (laughs). And I did fine without medication since childhood, so… (laughs).

D: Yeah, yeah, yeah.

S: Um… but anyway, I um… I like, as you can tell I talk fast sometimes, and so that‟s why they think, oh yeah, manic. And, so yes, I‟ve often fit the criteria; in fact, the one counselor who- the one psychiatrist who I went to see who said she would not take- um… would not require me on medication but then said it was only for eating disorders, she asked me what label I would fit most in high school. And I said I guess manic, because I did everything, I did all these activities, and I was into um, many different endurance sports and I ran marathons and um… and stuff like that or whatever, and she said, she put me down as manic disorder, and she said over into exercising, well at the time I was only running about four miles a week…

D: Mm-hm.

S: … and I thought that‟s not over-exercised at all. „Cause she just had that…

D: Right. Yeah, I know plenty of people who do that.

S: …she- she just took whatever label she could get from me from back in high school and put it on me, and she says I can‟t be schizophrenic and so I was too high-functioning with a job. So…

D: I see. Um, I‟m curious to what, about what you think about any- any kind of diagnostic, uh… or psychiatric label, uh, either ones that have been applied to you, or just about the- the process of diagnosis and labeling in general. Have- have they been at all helpful in any way, to- to point to a label like Bipolar or ADHD or… or Schizophrenia or… what are you… what are your views on that?

S: Um… I think sometimes they can be helpful in giving a diagnosis classes because somebody says “I‟ve been diagnosed Bipolar,” you have an idea of what their diagnosis means…

D: Mm-hm. Mm-hm.

S: …that they have ups and downs or manics or whatever. Schizophrenia is that have conspiracy theories or ah, delusions or hallucinations or something like that or whatever. So you have - labels I think can be useful in having terminology to talk about stuff…

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D: Mm-hm.

S: …but I think that they often can be so damaging, um… because people ha- have stereotypes and just like labeling somebody black, you have a stereotype of what a black person acts like.

D: Right. Right. Well, that‟s a good way to put it.

S: Um, and I do want to tell you – I‟ll tell you this but I want this to go off the record if this is okay?

D: Sure.

S: Is that, I was, when I said I was an educator in the school, I was actually a school psychologist.

D: Oh, okay.

S: And so I was into the business of doing psycho-educational assessments. And um, when I was in the psycho-educational assessments, if a child said that they did not want to be in special education…

D: Mm-hm.

S: …even if they were labeled mentally retarded, I got- I found ways to say that they were not eligible for special education and they were not longer mentally retarded.

D: I see. I see.

S: And I found I did a lot of choice and I upset a lot of people. First of all, when I…

D: I‟m sure there would be some people that would be upset about that, yeah.

S: They used to say that “oh this kid has an IQ of 70, he‟ll never make it, he‟s not going to Harvard, obviously” or whatever like that, and I‟d say, “want to make a bet?” I said “If this kid wants to go to Harvard, I think he has every right to go to Harvard.” He might need a lot of work or whatever to do it - you know with the educational disadvantages, um… but, you know, would be able to, you know, there‟s scholarships and stuff like that, like there‟s this movie called Homeless to Harvard, where a girl did do that.

D: Oh.

S: And… um… that‟s only come out more recently. I didn‟t know- that move- that movie didn‟t exist when I was- when I was advocating that in the schools back then.

D: Uh-huh.

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S: So anyway, I believed in a lot of the choice model, and I- I created a lot of ruffled feathers because they‟d say – like my one supervisor, the special education director, she would say, “You‟re not gonna let a kid choose their own diagnosis are you?” I‟d say “Sure I am!” And I would support it back with the psychoeducational assessment; it‟s just that with the mental retardation, you could usually find, like if a kid with mental retardation, you could usually find it was due to educational disadvantages, the kid has a lot of absences or isn‟t participating in school whatever like that. And so…

D: Absolutely, yeah. Yup. There‟s been a lot of critiques of IQ testing with regard to level of education, with regard to cultural, and you know, racism within- within those kinds of tests.

S: Exactly. And the linguistic differences, there‟s a lot of stuff like that, right.

D: Absolutely. Yup.

S: Yup. And so I did. If a child wanted to say “Hey I want to be learning disabled,” I was able to find- all I had to do was find a processing difference and said “hey, this area‟s weaker than some other area,” and say “Fine, you‟re learning disabled.”

D: Mm-hm.

S: And if a kid changed their mind the next year, I‟d say fine – I had supervisors who said “We can‟t have this to be a…” um… what do you call it? “…a revolving door policy.” I‟d say “Why not? I think that‟s fine. Let the child try special education for a year; if they don‟t like it – you know they have to deal with the stigma them self, it‟s their choice. If they don‟t like it they can choose out next year.” So, that I don‟t want to be on the record because um… it‟s very, it - unless you can find a way that somehow put it in record of… except for the um, I‟m afraid because I‟m not (sighs). I‟m not publicly about my um, diagnosis.

D: Mm-hm.

S: And so people who I meet, when I meet my old colleagues from school psychology want to say “What are you doing now?” I say “Oh… it‟s a long story.” And I don‟t go into it. I get out of there as fast as I can.

D: Right. Right.

S: Um, so I‟m not into publicly announcing- my court cases… (explains about court cases being anonymous) …so they‟re not under my own name either. So um… I have um… so with the school psychology, it‟s very important with what I do. I really, firmly believe in choice and was doing it in the schools before I ever got into the mental health system.

D: Yeah.

S: So it‟s- it‟s a key- it‟s a key part of who I am, but um, it‟s not- it‟s- since I was the only school psychologist in the field, it‟s too much to label… there‟s too few school psychologists and it‟s

162 too much to you know, unless you can figure out a way of how to be disclosed enough, um… to do that, so… I‟m willing to work with you on it.

D: (Explains a bit more about confidentially and measures taken to protect identity)

S: (Agrees that it‟s okay to put her occupation in the transcript as long as her name and the state she worked in are left out)

D: (Explains a bit more about the transcript and how it will be analyzed and that she will have control over what gets put in or left out) …and my last few questions are about mental health reform.

S: Oh, something else I need to say that‟s very important too…

D: Sure.

S: …is that the hospital sued me for the hospital bills. The first hospital where I was at…

D: Oh.

S: …the first hospital where I was at, they billed me for $4000, and I wrote to them complaining to them about the bills and saying that “You did all this horrible stuff to me.” They never billed me back for it. They just, I guess, let the charges drop. But the second hospital where I was at when I was under court-ordered treatment, they billed me for $20,000 – for $13,000.

D: Wow.

S: And that‟s still in the- it‟s still in the um, court right now.

D: I see.

S: Um… I‟m trying to appeal it, and I don‟t want to pay the money for it, um… but what happened – and this is something for you to know how our state works, and I think many states work like this too – is that, if I qualifying for Medicaid, um… then Medicaid would pay for it and I wouldn‟t have to pay for it. But I was making fifty dollars more – on my Social Security, when I got Social Security – I was making fifty dollars more for Social Security than what Medicaid paid.

D: Mm-hm.

S: And so therefore it gets billed to the person. If you‟re- if you‟re under court-ordered treatment, they say that you have to pay for the hospital yourself. If you don‟t go court-ordered treatment, then they- you don‟t have to pay for any of it.

D: I see.

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S: And I didn‟t know any of that. I was never told by any lawyer that if I was under court- ordered treatment I would have to pay for it. Otherwise I might have – been faced with a bill I might have said “No I‟ll voluntarily take the medication.”

D: That- that sounds completely backward.

S: Mm-hm. Yeah.

D: That they would bill somebody for a treatment that they didn‟t want in the first place, but they won‟t bill you if you voluntarily agree to it. That- that makes no sense.

S: Exactly. It doesn‟t. What with the- right, exactly. No, the- the voluntarily, they- sorry – the voluntarily… no I‟m- I‟m mis-speaking a little bit. That… the voluntarily, they would still bill you for the voluntarily, the voluntarily hospital, if you‟re- if you‟re voluntarily for the hospital.

D: Oh, I see.

S: But they- what they would have done is they would have said, “You can get out of the hospital.” But they kept me in the hospital longer because I was under court-ordered treatment.

D: Right. And hence, more bills…

S: Right. Exactly.

D: Yeah. Yeah. Okay. Um… so with regard to…

S: So that‟s- that‟s double- that‟s a double whammy. Even for people who choose voluntarily, they get stuck with the bills. If they- under Medicaid, then it goes to the taxpayers, and I think it‟s a horrible thing that taxpayers have to foot.

D: Mm-hm.

S: But then it‟s even a double whammy for those people who just miss, don‟t qualify for Medicaid because they get fifty dollars more like I did, for Social Security. And… um… if they get fifty dollars more and then they have to- if they choose to go voluntarily into a hospital – like some people find the hospital beneficial, if they find it beneficial and then they get stuck with the bills, they may choose- they don‟t want that option any more.

D: Mm-hm. Mm-hm.

S: So it‟s… it‟s a lot of systems that need to be changed.

D: Yeah. Yeah, well that‟s- that‟s a good start. That‟s one of the things I was going to ask.

S: Okay.

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D: In what ways can the mental health system in general be improved to better meet your needs, or just in general the needs of anybody who utilizes mental health services?

S: Right.

D: So that- that‟s- I guess that‟s one thing. Um, are there other aspects of the system that you haven‟t mentioned so far that…

S: Uh-huh. Well, I think that group should be open to people. They do have some groups; like the group that I was attending was a woman‟s group.

D: Mm-hm. Yes. Yeah.

S: That was a less stigmatizing label. They had others – they had other groups like “Self-Help” or “How to Manage Your Life” or whatever like that…

D: Yeah.

S: … and I thought “Oh, what a stigma… um, to it.” But, you know, having a women‟s group – and I don‟t know if they had a men‟s group; if men had to choose a more stigmatizing label that might have been more problematic. Uh…

D: I see, yeah.

S: But anyway, um… so um… with that I think that again having choice, and… um… you know, if they think that groups are… oh, the other thing is, is when I was in the hospital, they would put “negative isolating.” And a lot of people – there were other- there were other uh, coworkers of mine who were in the hospital who stayed in the room all the time, and they were put on more pay- more medication because they were considered isolative and must be depressed…

D: Oh…yeah.

S: … because they would stay in the room, but they were just trying to avoid the stigma of the- you know, seeing the other educators out in the public.

D: Yeah. Yup. Was that something you experienced first hand or with other people, you saw it?

S: Yes. Well, with other people- I stayed out of the room because I wanted to know what was going on.

D: Uh-huh. Uh-huh.

S: And so I- I didn‟t isol- I didn‟t isolate that much, but there were a few times when the trauma got so bad that I would isolate and they did put me down as isolative. And I thought, “Oh no!” And I thought, “I just wanted some time to think!” You know?

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D: Mm-hm. Yeah. (long pause). Okay. Um… oh, any other um… aspects of this experience…

S: Oh, another thing where they stigmatized me too is that I wrote many grievances, and I wrote like something like 70 grievances when I was in the hospital.

D: Mm-hm.

S: And the psychiatrist used it against me at the court. They didn‟t- they didn‟t fulfill any of the grievances; they didn‟t take any of them seriously. Like about wanting the newspaper everyday or…

D: Yeah.

S: … you know for us to know about the news or about the food or anything – grievances I had a problem about the court-ordered treatment, the way I was being treated, or the medication or anything like that. They didn‟t seem to take any of them seriously. They just used it against me and they just said, “Oh, she‟s filed 70 grievances against, that shows how psychotic she is or whatever, or how delusional she is.” Yeah.

D: Wow. (sighs) Wow.

S: And I thought, “No it doesn‟t, it shows how many things are wrong with this hospital.” (laughs slightly).

D: Yeah. Yeah. So any- any kind of problem that- that you experienced within the hospital or whatever was just used against you as- as further evidence of something wrong with you. Wow.

S: Yes. Exactly. Yes. Mm-hm.

D: Yeah, I don‟t- I don‟t think that‟s uncommon either.

S: Mm, no I don‟t either. And that‟s why many people would tell me, they‟d say “Wow you‟re brave in writing grievances.” They‟d say, “I don‟t dare do it.” And there were a lot of people that didn‟t write the grievances. And the first time…

D: Yeah, well. If that‟s gonna be the result of it, yeah.

S: Exactly, and the first time…

D: It‟s gonna scare people into not doing it…

S: …the first time I was in the hospital I was too scared to write grievances also. I didn‟t write grieve- I didn‟t write grievances till I got court-ordered the first time, and then I thought, “Okay, well I‟ve lost everything basically, so I‟m gonna write grievances”

D: Right, oh - yeah. What have you got to lose, I guess?

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S: Exactly.

D: Still, even- even with- you know, a view of- of really not having anything to lose, it takes an incredible act of bravery to do that – um… knowing that they‟re gonna, you know…

S: Mm-hm. Use it against you.

D: …use it against you. Right. Um, so now, with um… specifically with regard to empowerment, are there any things that you would recommend for mental health professionals to do that would help facilitate empowerment, um, amongst anybody receiving any kind of mental health services?

S: Um… well, what I read in the literature and what I think is true is that there needs to be human connection.

D: Mm-hm.

S: And… um… th- there needs to be human connection; they need to be able to believe in the people - that they can- that they can do anything they want to do. If they- they may have to work at- there may be a lot of obstacles like so much stigmatization and discrimination and…

D: Mm-hm.

S: Um… and there may be, you know, so much trauma involved or other things like that, that we have – we have- that- that may hinder us from- from doing what we want to do. Um… but I think not putting negatives on things; you know, you‟ll never be able to work again or you know, you‟ll have to take medication the rest of your life and stuff like that.

D: Mm-hm.

S: So I think in making human connection and believing the person, and… accepting their own experiences for their own perceptions as how they are - that‟s empowering.

D: Right. I see what you mean, yeah.

S: And allowing choices - again, like I say, if people want individual therapy or group therapy…

D: Yeah.

S: …I think they should have a choice, and they shouldn‟t be forced into it, because groups – some people are not the group type of person.

D: Oh, yeah, groups can be scary.

S: Yes, exactly.

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D: Yeah, I‟ve… I‟ve definitely uh, you know, have known people who may not have been ready for a group, or may not, you know… it- it- it- just kind of been- been threatened by the idea of other people there. Because I think it kind of brings up perhaps that uh- that fear of stigma – of you know, okay now all these other people are gonna know what I‟ve been through and... yeah.

S: Mm-hm. Uh-huh. Uh-huh.

D: Yeah there- there goes that- that word “choice” again. That‟s - we keep coming back to that.

S: Uh-huh. Yup. Mm-hm.

D: Alright, and then um…

S: And I think also too was that there‟s been no need for me to have been hospitalized each time. E- even if each time they wanted to force to medication me…

D: Uh-huh.

S: …they could have done the court-ordered treatments, the hearings, without the hospitalization. They could have even just done the court-order and said, “Hey look, we‟re gonna have this and- and um… force her to take medication” and just say “now you‟ve been court-ordered to take it. You need to show up for- at this certain place for- to get the medication or else we‟ll come to your door.”

D: Mm-hm.

S: But, you know, they could have done that without the hospitalization. There was no need for any hospitalization at all.

D: Right.

S: And I still don‟t believe I should have been court-ordered to take medication at all. I think that…

D: Yeah, that‟s- that‟s another issue there, yeah.

S: Exactly. When I developed- yes I have developed schizophrenia, and I have believed that um… When I was experiencing physical symptoms- this is the classic example of how I experience it. Is that, when I was in the hospital and I was experiencing physical symptoms, and… I was trying to document what was going on and I was trying to work- I- no I was actually trying to work on my court case. I was trying to work on my court case. And when I was trying to work on my court case and this actually happened at the library first. When I was trying to work on the court case at the library, um… I felt heat on my head. It felt like a migraine, um… a headache and it just hurt really bad.

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D: Mm-hm.

S: Well, as soon as I stopped working on my court case, it went away.

D: Mm-hm.

S: And if I changed positions, it would go away, and then as soon as I started writing again on my court case, it would reoccur again.

D: Yeah.

S: And so I figured somebody was out to get me and they were using some type of, like I implicated my um… my boyfriend again, is that perhaps he was using some type of electronics or to the um… into the system or whatever. Or there was some government agency that was using to- to follow me to get me into the mental health system, um… in order to, the- using some type of machinery up through air-conditioning vent I‟d often- often hear air-conditioning noise or something like that too.

D: Mm.

S: And that- that that system was working on my head, or on my body in order to get me to stop the court case, because- because when I‟d stop work on the court case it would go away. Well, the counselor I‟m currently seeing explained to me, she says, “Sally, it‟s just your physical symptoms.” She says, “It was so stressful for you so that you were feeling the physical symptoms…”

D: Yeah.

S: “…when you were working on it, and as soon as you stopped it would go away. That‟s why.” And she says “When you moved down once you started the activity, it would restart up again because you were real- redoing a stressful activity.” I said, “Oh, that makes sense.”

D: Mm-hm. Yeah. So having that alternative explanation was helpful.

S: Yes. Exactly. And, the alternative explanation- they say well schizophrenics don‟t listen to alternative explanations. Well, they may not listen the first time…

D: Right.

S: …but if you- if you try it again the second time and you be passionate and understanding their per- perspective or view, and say “Okay, well yes. It‟s possible that somebody could be out to follow you or whatever, like that…”

D: Mm-hm. Mm-hm.

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S: “…but maybe not either too. Can you just consider and see if this – you know, try to see if you- try writing a letter and doing something that‟s non-stressful instead, and see if that experimentation to see if that takes away it and then maybe nobody‟s following you or whatever.”

D: Right. Yeah, I think any time you‟re in the midst of such an emotional- emotional situation it‟s really hard to- to look at other alternative explanations.

S: Mm-hm. Exactly.

D: But, yeah, but eventually you‟re a little bit removed from the situation and you know, it makes more sense.

S: Uh-huh. Exactly.

D: Um, and then…

S: And what has helped me get out of the schizophrenia time is my boyfriend has come and this is where he says he‟s really scared for me to get hospitalized again. And next time „cause he doesn‟t know how can we up the ante again, because, um…

D: Mm.

S: …each time he has come and I‟ve said, “Okay, I guess he‟s not after me.” Because the last, most recent time he testified about how horrible it was to see me on Prolixin and medication, court-ordered. And I thought, “Oh, okay. He testified for me not being on medication so I guess he‟s not after to get me on medication after all.”

D: Right, right. So your- so it sounds like your trust in him has- has been built up as he‟s been supportive throughout these- these experiences.

S: Yes. Yes. And - he- it‟s… come to the fact that when it‟s come to the testimony or the hearing through the hospitalization, it‟s only been through that that I‟ve realized that he‟s been supportive with this.

D: Right.

S: And… so it‟s… um… it‟s unfortunately a bad coincidence so it makes it look like I‟m doing well after the medication, which isn‟t the case.

D: I see. Yeah. Yeah. I guess if you have a certain view of what‟s working, then anything can be seen as supporting that view.

S: Exactly.

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D: So if there, you know, belief in medication, you could say, “Oh, it‟s the medication.” Or… or you could look at a different reason.

S: Mm-hm. Yes. Exactly.

D: Um, the other thing that really strikes me about your- what you‟re saying about…

S: Oh, yeah – sorry, but the other thing with the medication too is that, the medication is very stigmatizing when my face got deformed with um, Prolixin…

D: Yes.

S: And I‟ve been drooling on Prolixin and on Haldol. And… that‟s very stigmatizing and it‟s- also I think that makes me into a dangerous person because saliva… what if I have AIDS or something like that?

D: Oh, yeah.

S: I don‟t- I- I haven‟t been diagnosed with AIDS to the best of my knowledge, yet. But, you know, if I were to have AIDS or something like that, um… you know, the saliva or the germs, I mean that could drool into other people, so that- I think that makes me more dangerous than less dangerous, actually.

D: Mm. And just the- just the assumptions that people have when they see…

S: (inaudible). Yes, they see me salivate – see me drooling it‟s like a baby. It‟s horrible.

D: The other thing that I was gonna say was- that struck me about your relationship with uh, your boyfriend…

S: Uh-huh..

D: …is at the time - I don‟t think you- you mentioned how long you had known him – but at the time it seemed like you didn‟t know him for very long when you were hospitalized. So…

S: It‟s true. Right, I had only know- I had only known him for uh, about… let‟s see, February, March, April – two months. I had only known him for about two months the first time I got hospitalized.

D: Oh yeah. So it makes sense that, you know, you wouldn‟t, you know, have that kind of trust in a person after only knowing them two months.

S: Exactly.

D: And would be still having doubts about you know, any- any relationship after two months, I would think. There would still be doubts. You know?

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S: Mm-hm. Good point. I hadn‟t of thought of that. Good point.

D: But, it‟s- it‟s- it‟s good to hear that the two of you, you know, that things are going well.

S: Oh and then- Yes, thank you. And actually, I need to say, actually I knew him for a year and two months, „cause I‟d met him a year before earlier…

D: Mm-hm.

S: …but I had organized some hiking trips with a bunch of friends and we‟d gone hiking and stuff like that, and he‟d gone on some of those hiking trips, but I only knew him as kind of like an acquaintance like.

D: I see.

S: I didn‟t know him very well at all.

D: Right.

S: But, so I‟d only gotten to know him like two months before hand, um… to get to know on a personal level.

D: Okay. Alright, um… anything else you wanted to add? About any…

S: I can‟t think of anything right now.

D: Okay. Um, the one other question I had was just, with regard to stigma and discrimination in general; um, is there anything that- that you think mental health professionals can do to help eliminated stigma and discrimination, um… amongst people who come in with- you know, who- who are receive services?

S: Um… well I think one thing is that I‟ve already mentioned is it should be integrated settings.

D: Yes, you did mention that. Yup.

S: And…I think that‟s very important. And… um… they shouldn‟t have groups with labels or anything like that, and if people want to disclose their labels - wonderful. Because sometimes people want to say I want to meet other schizophrenics. In fact, I‟ve told my private counselor like that – I‟ve said, “If you want to hold a group with other schizophrenics, I‟d love that.”

D: Mm-hm.

S: Um…

D: Even- even online I think.

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S: Huh?

D: Even online groups…

S: Oh, yes. Uh-huh.

D: where people, you know, want to meet other people that have had the same diagnosis – or have had the same experiences.

S: Mm-hm. Mm-hm. Mm-hm. Yes, uh-huh. Exactly.

D: So again, just having- having the choice whether to do it or not.

S: Mm-hm. And not being forced to disclose if you don‟t want to.

D: Right. Right, that‟s…

S: And even not being forced to disclose whether you‟re under court-ordered treatment or not and forced to disclose whether you‟re on medication or not.

D: Right. Right. You used the term segregation earlier with regard to… um… racism, and comparing, um… comparing the um… problems with people in the mental health system to… uh, problems with uh, equal rights for African-Americans in the 60s, and that segregation piece definitely seems to ring true.

S: Uh-huh. Right. Exactly. Uh-huh. Mm-hm.

D: Alright. Um…

S: And, I do want to say is that, when I was on the medication, I was not feeling like myself when I was on the hundred milligrams of- of Haldol, and I felt like – even doing something like uh, just stealing the police car or something like that which I never otherwise would do. But I kind of had the impulse, urge because I was just so angry.

D: When you were on Haldol? When you were on a hundred milligrams of Haldol?

S: Yes. When I was on the hundred milligrams of Haldol, yes. But I didn‟t dare tell any of the social work- I didn‟t dare tell any of the people at the agency, because I thought they‟d just put more medication on me, or put another medication. And – also, when I was on Prolixin, I was suicidal the first time. I felt like- I felt like running myself into front of a train, but I did not because I was trying to work on that court case. I had my court case in my backpack, and I said “Okay, I won‟t.” But that horrifies me now to think of it, that, that would be a painful way to die is in front of a train.

D: Yeah.

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S: But I didn‟t dare tell any social workers. In fact, they didn‟t – when I was on medication they didn‟t even ask if I was suicidal or not. And…

D: Wow.

S: …thank God they didn‟t, „cause I would not wanted to mention it because otherwise they would have probably given me an anti-depressant and I didn‟t want that. So…

D: Mm-hm. So certain medications actually led you to feel more suicidal or led you to be more impulsive?

S: Yes. Mm-hm.

D: Yeah, and that- that‟s, wow, another Catch-22, and if you say anything about it, it‟s not like they‟ll say, “Oh, we‟ll just take you off that medication.” There‟s always the…

S: Exactly. They‟ll put you on more medication or different types.

D: Right, right. Yeah.

S: Or combined. Yes. And, do you have – I know we‟re running out of time – do you have a little bit of time for me to talk about two more aspects of discrimination?

D: Sure. Yeah. I‟ve got as much time as you want.

S: Okay, great. Um… with the aspects of discrimination, um… what I went to say when I went into my diagnosis of schizophrenia, is I was at the one courthouse building, and… I… at that time I was into my full-blown schizophrenia…

D: Mm-hm.

S: …and I thought that um, when I was trying to work on my court case I was experiencing the heat on my head at the library, and so I called 911 to report what was going on, and they arrested me for trespassing at the (name of building) building – at the- I won‟t want to say what building. They arrested me for trespassing in the courthouse.

D: Mm-hm.

S: And so I got the experience of being in jail, which was good. On a positive note, now I know what it‟s like to be in jail. (laughs).

D: (slight laugh). You‟re very good at seeing the uh… the- the bright side of things, it seems like.

S: Yes (laughs). And…

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D: So that- that- you said that was another example of being discriminated against.

S: Yes, being discriminated against, because what- I just made one call – one simple call…

D: Yes.

S: … (inaudible) about that, and I was there on court business to do the court- to do a court filing and use the court library, and I don‟t think they should have arrested me for trespassing.

D: Mm-hm. So you um… I‟m guessing that your theory is that if you didn‟t have that- that label, then they wouldn‟t have…

S: And actually- well actually what it was is that, I told the security guard that I was complaining that something happened to my head or whatever, like that.

D: Mm-hm.

S: And… um… that some type of technology was used for that. They didn‟t know about my call to nine- to 911 yet.

D: I see.

S: They found out about that afterwards. So they wanted to arrest me for trespassing just because I was complaining to security and I wanted to write a grievance about that.

D: Uh-huh.

S: And, I think they should have just let me do is just write a grievance and say, “Look, if you‟re worried that something here is helping (?) your head, then maybe you should spend less time here in the building,” or something like that.

D: Right.

S: “And here, we‟ll take your grievance,” and you know, say, “Look, we don‟t really believe you so there may not be seriously anything done with it, but we‟ll take your grievance. You have a right to write a grievance so we‟ll take it.”

D: Yeah, yeah.

S: That‟s what they should have done.

D: Right, just because you write a grievance doesn‟t mean they have to believe you, but...

S: Right.

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D: But they just immediately… had you arrested. That‟s- wow.

S: Right, exactly. And, if they had three or four other people that complained of the same thing, then they maybe should have said, “Okay, well maybe we do need to take this grievance seriously. Maybe there‟s something wrong with the air-conditioning or something like that.”

D: Mm-hm. Mm-hm.

S: But I understand with just one person that sounds schizophrenic; okay it‟s probably schizophrenia – case closed.

D: Mm-hm.

S: Um… but they should not have arrested me for trespassing because of that.

D: Yeah. Yeah, they‟re… it‟s two unrelated things.

S: Right. And then also, another court building I was in, I was trying to file document, a court document. And they asked me to leave because I was sitting there writing the court document in the court building. And… it was after hours – it was still when the public was allowed to be, but after regular business hours.

D: Mm-hm.

S: And… um, I was writing the court document to be filed, and I was sitting there so that I could have a place to write it, and I wasn‟t experiencing heat on my head there or anything like that, so I thought, “Oh! This is a great place for me to write it – safe and everything like that.”

D: Mm-hm.

S: And they said, “Ma‟am.” They said, “It‟s unusual to have somebody sit there for this long.” And I wasn‟t nosy into other people‟s cases. I wasn‟t asking what other people were doing or anything like that.

D: Mm-hm.

S: And… they said, so, “Sorry, we can‟t have you here, and you need to be - leave.” And so they, after leave I said, “Please, I need to file this document. Please.” And I told the police that, when they called the police on me, and I said, “If you don‟t allow me to file this document, it‟s gonna be obstruction of justice.” And so they let me file the one document, but then I got a note from the security guard saying that I‟m not allowed in the building during the evening hours. And I think again, that‟s discrimination.

D: Mm.

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S: And… you know, during the evening hours, it could be a safe place to write in the court house. And… if I‟m- I was there filing court documents, so I wasn‟t- but even if I wanted to observe what other people were doing, I think it was in public, I should have been able to do it as long as I wasn‟t interfering. They never accused me of interfering with other people filing stuff.

D: Right, right. Yeah, I don‟t- I don‟t know what their policies are, but whatever it is, it should be a consistent rule for- for everyone. Yeah.

S: Right. Mm-hm.

D: Yeah, those were- those were two good examples of being treated differently. Alright, well, is there anything you would like to add?

S: I can‟t think of anything.

D: I want to thank you for sharing your story with me.

S: Your welcome.

D: Um, I‟m really grateful that you um, were willing and able to do this. Um, and… if you- if anything comes up that you think of that you forgot to mention, or… again if you have any questions about the whole- any part of the process, just feel free to shoot me an email and I‟ll get back to you as soon as I can.

S: Okay. Okay, sounds great.

D: (Explains a bit about the process of writing up the transcript and the analysis of the transcript, including the collaborative process of editing the final product).

S: (Asks “what got you interested in doing the study?”)

D: (Explains about interests in qualitative research, a relational psychotherapy, and alternatives to the medical model, and consumer/survivor involvement in mental health reform).

S: Well, thanks for sharing that with me.

D: No problem.

S: Oh, and I do want to say too is my cousin has been diagnosed with schizophrenia.

D: Mm-hm.

S: She‟s on medication and she says that she‟s doing well on the medication. And so she advises me to just take the medication. However, she‟s also a ward of the state, and – which I‟m not, fortunately.

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D: Mm-hm.

S: Um… but, and also too I‟ve asked her if she thinks the changes in the social relationships she has now, if they might not have occurred over time. Just, and- you know again with the medication being perhaps a placebo effect, I don‟t really know.

D: I see. Yeah.

S: (Asks a few more questions about the study, e.g., about the number of participants).

D: (Answers questions)

S: (Mentions that she has forwarded my recruitment email to several other people and tells me a bit about them)

D: (Says a bit more about the study)

S: Oh, and another stigmatizing thing that‟s very hard for me too is that the case where the hospital is suing against me…

D: Yeah.

S: …they‟re suing in my real name, and that hospital, they do use- it‟s- it‟s a hospital that‟s been used for other things, but in order to testif- it‟s a hospital that wasn‟t purely psychiatric. It‟s – it is- it is fully psychiatric now, but it wasn‟t at the time, fully psychiatric…

D: Mm-hm.

S: Um… but the hospital, um… I had to in order to defend myself say I was involuntarily committed, therefore I should not have to pay the bills, because I never agreed to pay for any of the bills- I didn‟t sign up for any of the bills or anything like that, and then I was, um… the court case is under my own name and I tried to get them to change it into proceed anonymously, and at the superior court, which is the lowest level court level, they never ruled on that motion. And… I‟m having trouble at the higher courts to get them to rule on the lower court motion (?)- they- they‟ve allowed me to proceed anonymously at the court of appeals, and at the um… superior, eh, supreme court of the state…

D: Mm-hm.

S: …but um, not ruled on the um… the low level court yet.

D: Oh… okay.

S: So… does that make sense? Sorry, I don‟t know if I‟m making myself clear or not.

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D: Um… yeah, I‟m not- I don‟t know. I‟m not sure. I‟m not sure if I follow it, and it might be the legal policies that I‟m not familiar with.

S: Okay. Well, the… superior court is um… I think they have it in most states, like, superior court is uh… where they filed the lawsuit against me– the collection agency for the hospital…

D: Yes. Okay.

S: …filed the lawsuit against me. And, it‟s in my name.

D: Mm-hm.

S: In order to respond to the hospital, I had to say “Hey look, I was involuntarily committed. I was never agreed to the bills. I was never given any type of consideration or contract or anything like that for it, or whatever.” Like that.

D: Yes.

S: They denied me and they said “Tough. You- you never denied being in the hospital, so therefore you have to pay the bills.”

D: Uh-huh.

S: And… so they ruled against me. It went up to the court of appeals, and the court of appeals let me proceed, I said I want to proceed under the name (an alias) instead of under my real name; they said fine.

D: Right.

S: But I said, “also I want to change the lower court‟s name into (same alias) too.” And they said “Sorry, that‟s not in our jurisdiction. We can only do our own court.” So I can‟t, I- I haven‟t figured out how to get the lower court to- to take off my name, to retract (?) my name and change the name of the court case there.

D: Mm-hm. I see. Right - okay. So that- that hasn‟t been an option.

S: Right.

D: Yeah, okay, I understand now.

S: The other thing that is very discriminatory too and is very harsh, is um, the mental health number- statistic forms – you know this from being in clinical psychology, and I know this from being in school psychology, just like the IQs, they use GAF, G-A-F, you know what GAFs are, right?

D: Mm-hm. Yeah, oh yeah.

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S: They use GAF and they use other numbering systems to try to quantify the mental health system.

D: Right.

S: Well it comes- they make us look very retarded, very ill-functioning, and gravely disabled and horrible.

D: With the GAF numbers?

S: Yes.

D: Yeah.

S: With the GAF numbers and even with- even with the other number forms that they use, the- the state- state-made forms.

D: Mm-hm.

S: And they say, you know, how low-functioning or high-functioning you are you on these different numbers. And… if you‟re not taking medication, they say you don‟t know how to take care of yourself. They use that to judge yourself, and say you‟re low-functioning.

D: Yeah.

S: And it makes you look very horrible and stigmatizing, and so if family members or anybody else reads those cases…

D: Mm-hm.

S: …it makes them look, it- it gives them a worse impression than what‟s really going on.

D: Yeah, I see. Yeah. Especially because those GAF numbers are… a lot of it is very subjective, and uh...

S: Yes. Yes, and these other forms I‟m talking about, that are state- that are state-made are also very subjective too.

D: Yeah.

S: Like I said, if you don‟t take medication they say they don‟t know how- you don‟t know how to take care of yourself, and they put down you- below zero…

D: Right. That‟s not seen as a life choice, it‟s seen as a deficit, in some… someway, yeah.

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S: Exactly.

D: Yeah. Wow.

S: Oh, and another stigmatizing thing too, is that when I went to, um… oh. Do you have some time still?

D: Yeah.

S: Okay. That, um… the one time – the second time that I went to get hospitalized… or - I went to get hospitalized – the second time I was hospitalized, I had made a number of calls to 911 because I thought I was being stalked…

D: Mm-hm.

S: …and I thought I was being stalked by the hospitalization people and perhaps my boyfriend. And… um… so I um… called 911 a number of times, and the reason why I ended up called 911 is I tried to call the regular police number and they- they- it didn‟t function during the night time hours.

D: Mm-hm.

S: Or they said, “Sorry, if you want a police officer to respond, you have to call 911.” And so I would have to call 911. And so then anyway, the police suggested that I go to the crisis agency in town. So I voluntarily went to the crisis agency because the police recommended me to do that. So I did do that. And the… they said, you know- you know, how can we help you or whatever like that, and I said, “Well, I‟m looking for some counseling, some cheaper, some cheaply more affordable counseling.” And… they said “Well, do you want to take medication?” And, and they said, “How about some medication?” I said, “No, I don‟t want to take medication.” So they put down that I refused services just because I didn‟t want to take medication. And just like the psychiatrist I said who um…who I went voluntarily to say, who said that um… she would- that she would not prescribe um, medication to ah- to eating disorders people…

D: Yes. Yeah.

S: …she also said was refusing treatment. Even though I asked her to see if I could do EMDR. Oh yes – I‟ve gone to EMDR for my own, to experience the trauma. Do you know what EMDR is?

D: Mm-hm. Yeah. I‟ve heard of it.

S: Okay. Yes. I- with the current counselor that I‟m seeing this year, to help me deal with the hospitalization, I‟m doing EMDR. And I‟m doing that voluntarily and that‟s helping me.

D: Oh, okay. Yeah.

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S: And… um… and that‟s where I went- the psychiatrist who said she would not prescribe medication to those with eating disorders, I told her that I was interested in um… pursuing EMDR, and she wrote down that I was refusing services, just because I didn‟t want to take medication again. (coughs).

D: Mm. So refusing services means… um… if you- if you refuse medication you‟re labeled as refusing services, period.

S: Exactly. And… I- I- that‟s happened to me, at least twice – there may have been other times I can think of – but there‟s at least twice that it‟s happened and they just put a label. And then, the crisis agency, because I- I said I wanted to find cheaper counseling, I wanted to know if there could be cheaper counseling or whatever. They should have got back to me, they might have been able to say, “Hey look, the only way to find cheaper cou- counseling is if we hospitalize you,” or whatever the system is or something like- they could have said that, or they could have said, “Here‟s a list. Call these list numbers,” or “We can‟t find any cheaper counselors, you know, you might be- have to go with more expensive ones, here‟s what to do or whatever.” But they never got back to me, and instead, the police came to my door and hospitalized me.

D: Mm-hm. Wow.

S: On basis of PAD – again, persistently acutely disabled, not um… not danger to anybody, but just on basis of persistently, acutely, disabled. And they, um… they hospitalized me on the basis of that, um… they hospitalized me on the basis of that and um, for refusing services, just because I refused to take medication, even though I was seeking there. So each time I was labeled refusing services, I was even seeking some type of service, which I think should be to my credit, and no credit was given to me at all.

D: Yes. Yes.

S: So it was very disheartening.

D: Yeah. Somebody‟s looking for services; just because they don‟t want the one that you think they should have, then that‟s seen as- as a bad thing- as a negative thing.

S: Mm-hm. Yes.

D: Yeah, that doesn‟t make any sense to me at all. It never has.

S: Right, and in particular, the one thing here is- this field is so medication dominated so the one thing tends to be medication.

D: Yeah. Yeah, unfortunately it does. (long pause) Yeah, and I‟m – I‟m in agreement with you, I think that if people are choosing to go that route that should be- that should be an option, but um… it‟s not seen as an option, it‟s often seen as the option, or… in conjunction with therapy, but- but you need the medication part.

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S: Mm-hm. Right. Yes, mm-hm. Uh-huh.

D: Yeah… and that- I guess that just speaks to the… the predominance of the medical model, so much.

S: Yes, unfortunately. Yes, and the last time I was in a hospital system, they told me for the (unclear), they said “No agency would take her without her being on medication,” and I thought, first of all, have they tried? And second all, they ha- if they don‟t take you without being on medication, isn‟t that a problem? And third of all, I had a psychiatrist who- and a counselor, both who were willing to see me without taking medication.

D: Mm-hm. Yeah. Do you know – when you‟re told these things – do you know what they‟re basing it on? If they‟re basing it on just seeing the label, “schizophrenia,” or if they‟re basing it on some kind of assessment they‟re doing of you? Of- of… do you- do they ever tell you what- what that‟s based on.

S: Mm-hm. They don‟t say what it‟s based on…

D: Okay.

S: …but, um, I can infer what there- it‟s based on.

D: Yeah.

S: The- the… time they told me that no agency would take me without taking medication, is that each of the med- each of the agencies – they only have three agencies they refer out to…

D: Mm-hm.

S: … and so it‟s kind of a, um… they should be able to refer to private counselors or anybody else, but they only refer out to three agencies, and those three agencies prescribe medication.

D: That‟s just their… their general rule for everybody?

S: Exactly.

D: I see.

S: And in fact the one psychiatrist even said that, he says to me, “That‟s all we do here is medication.”

D: Okay. Okay.

S: So, um… and, the crisis center – that‟s what they‟re so medication-oriented, that‟s- that‟s what they do, their primary thing. And part of it is, is that some of the- some of them… it‟s the medication (unclear) is easier; fifteen minutes the psychiatrist …

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D: Oh, yeah.

S: … can do fifteen minutes - change up or down the medication…

D: Yup.

S: …instead of doing an hour of psychotherapy or a couple hours or whatever it is.

D: Yeah.

S: And in fact I got one psychiatrist to side with me a little bit, and I said, “Wouldn‟t you rather be doing psychotherapy, than prescribing the medication?” He said, “Actually, yes I would be,” but there‟s not – many of them wouldn‟t, because it‟s easier. I know when I was in school psychology actually. Oh yeah, this is another thing. School psychology, my supervisor for my internship wanted to get the rights to prescribe medication. And was trying to advocate for it, and asked me if I would go help advocate. I said, “No, I don‟t want those rights…”

D: Yeah.

S: And he said, “Oh, wouldn‟t it be easier if we could just do the medication, prescribing here with us?” I said, “No, no, no.”

D: Yeah, the same thing is happening in clinical psychology. (goes on to describe this debate in clinical psychology). Alright, do you want to end there?

S: Yeah, sure.

D: You‟ve given me a lot. You‟ve given me a lot of information.

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Appendix E: I Poems (Participant 1) (Page 5): I‟ve not been real close with my family I had I had I‟ve been in the mental health system I‟ve cut it off with my mom I just I couldn‟t deal with it anymore

(Page 8): I got diagnosed I got involuntarily hospitalized I got my two graduate degrees I was out in the working world I had always had a consistent work history I got I got involuntarily hospitalized I got involuntarily hospitalized

I just felt I wasn‟t suicidal I just I just couldn‟t handle it I‟d always I had always tried I wanted to have a good relationship with my mother I tried often

(Pages 9-10): I never voluntarily consented to take the medication I was court-ordered I refused They decided I was irrational I was refusing

I should have never told my mom I got involuntarily hospitalized I got involuntarily hospitalized I called I told her I had no thoughts in my mind at all to tell my mom

I called my mom

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I wanted I said I preferred to stay I really appreciate the advice I should I should have never told my mom I had been hospitalized

(Page 10-11): I‟ve been on and off it I‟ve been on it I‟ve only been on it under court order I‟m currently on I was on I think I was writing

I was I just was having I just was I just was having trouble I‟m seeing I complained I‟ve been on

(Page 12): I had been a skeptic of medication I was in high school I was in athletics I didn‟t have athletic ability I had a knee injury I had I had I think it was

I was having such severe headaches I was still experiencing headaches I also realized I couldn‟t feel the pain I was on the medication I was out of season I wasn‟t able to compete I stopped taking the medication I could feel the pain I could moderate the pain

I decided

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I‟d much rather feel the pain I still have knee problems I just moderate my own pain

(Pages 16-17): I wasn‟t sleeping much I wasn‟t sleeping I had two jobs I was I wasn‟t sleeping much I guess I will I had been particularly worried I was suspicious I met him I thought

(Page 17-18): I just don‟t like I just was real suspicious I didn‟t like I didn‟t like the fact that he had done that I‟m not really sure

I felt a heavy burden I had been I had been on the phone I‟ve had an on and off relationship I got I got a message I needed to come see her I had gotten a phone call I had broken off the relationship I had gotten a phone call I had broken off the relationship I had broken off the relationship I‟ve forgiven him I think that I don‟t think he‟ll do it again

(Pages 19-20): I decided I was gonna stay over I had all these scary things going through my head I showed up I went up to my friend‟s house

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I didn‟t really want to be around the guy I had also been a volunteer I forget I didn‟t go I just thought I had no reason I wasn‟t really sure

(Pages 22-29)

I went to use the phone I went to use the phone I tried calling my friend I got I got even more scared I just thought I then I asked I used to work I don‟t want to say I used to work I did that I did I went I‟m like I thought I said I‟m sorry I apologized

I had tried calling I had tried I couldn‟t understand I thought I thought I didn‟t understand I didn‟t know I lived I didn‟t understand I got agitated I didn‟t throw the phone I just I was pressing

I went to ask somebody I told them

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I said something I said I didn‟t know how I just said I thought I didn‟t I needed I went to use a different phone I went I was on the phone I was calling I was going to be late I was held up I just explained I said I said I hung up I lost it I just thought I just thought I thought I just thought I‟m gonna die!

I just thought I had visions I had visions I had never I was I volunteered I had written I was terrified I learned I tried I was a volunteer I had I did I started screaming I started screaming I thought they were gonna kill me I had heard I‟d gone I was I didn‟t know I was I was

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I thought I thought I don‟t know I don‟t know I thought I suspected I was still volunteering I started screaming I had remembered I wondered I just yelled I said I just was I just was I could I thought I was gonna get killed I was trying I did I drew a lot of attention to me

I started screaming I started to say I want I was scared I knew I had been I was I wanted I wanted I was just scared I was I had seen I had seen I‟m trying to think I wondered I have no clue I had seen I had I told her I had been I was concerned I was I was I called my friend I told you

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How do I get out? I didn‟t know I don‟t know I said I can get out? I thought I want to get out I said I thought Can I? I thought I have I was very skeptical I just thought I thought I thought And I thought I had nightmares I‟m not gonna take any medication I‟m just gonna make a stand I „m gonna refuse

(Pages 35-36): I was seeing a counselor I was seeing a counselor I I went to see I had told her I‟d had I said I‟m willing I feel good I told her I said I said I‟m willing I got this letter I took I think I know why I was redeveloping I think that that was the wrong approach I think she should have had some closure

(Page 38): I saw I actually saw

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I saw I went I convinced my ex-husband I didn‟t really want to consider I realized I couldn‟t live with it I couldn‟t live with myself I didn‟t want to hear it I cried I biked I biked I biked I cried I should get a divorce

(Pages 68): I was on medication I was not feeling like myself When I was on I felt like I kind of had the impulse I was just so angry

I was on I didn‟t dare tell I didn‟t dare tell I thought they‟d just put more I was on I was suicidal I felt like I felt like running myself in front of a train

I did not Because I was trying I had I said “Okay, I won‟t”

(Page 73): I had to I was involuntarily committed I should not have to pay I never agreed I didn‟t sign up I was I tried

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I‟m having trouble

(Pages 76-77): I voluntarily went to the crisis agency I did do that

I said I‟m looking for some counseling I said I don‟t want to take medication I refused I didn‟t want to take medication I said I went voluntarily I asked I could I‟ve gone

I I‟m seeing I‟m doing I‟m doing that voluntarily

I went I told her I was interested I was refusing I didn‟t want to take medication again

I I I can think I said I wanted to find cheaper counseling I wanted to know I refused to take medication I was seeking I was labeled I was even seeking I think

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Appendix F: Content Poems (Participant 1) Medication:

(Page 5-9): She wanted me to be on medication “Are you on medication?” and “Take medication” Wanting to force me on medication - I just couldn‟t handle it anymore

I never voluntarily consented to take the medication I was court-ordered to take the medication I refused to take the medication They decided I was irrational and didn‟t have the ability to consent to medication Because I was refusing to take medication

(Page 11-14): On medication

On the medication Not on medication A skeptic of medication

On the medication I stopped taking the medication Different types of medication

Take the medication You needed medication It wouldn‟t work without medication I was really skeptical of the medication I haven‟t needed medication

Hospitalization:

(Page 8-10): I got involuntarily hospitalized I got involuntarily hospitalized I got hospitalized I should have never told my mom I got involuntarily hospitalized

I got involuntarily hospitalized My mom came down to the hospital I preferred to stay in the hospital My mom might be able to get me out of the hospital I should have never told my mom I had been hospitalized

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(Page 29-31): I kept wondering how to get out of the hospital The only way to get out of the hospital I want to get out of the hospital The first hospital Then they transferred me to the second hospital The second hospital…

The second hospital, I was in there about 3 weeks Because I got hospitalized I had to take a leave of absence from my job When I was in the hospital, The second hospital I saw numerous people from both those jobs that were in the hospital with me I thought, “They know I was here in the hospital.”

Trauma:

(Pages 31-42): I was so traumatized I was too traumatized I was too traumatized to go back The trauma of the hospitalization I go to see a counselor once a week to help me deal with the trauma And the trauma- the hospitalization The experience traumatized me a lot It has traumatized me so much I had told her some of the trauma But with this trauma I think that was more traumatic for me than it may be for other people

Choice:

(Pages 39-62): I had the choice I‟ve had to make the choice To make your own medical choices

I did a lot of choice and I upset a lot of people

It‟s their choice I really, firmly believe in choice Again having choice And allowing choices

I think they should have a choice and they shouldn‟t be forced into it

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Discrimination:

(Pages 52-62): I wanted to feel the societal discrimination I had empathy for what they were going through, with the discrimination To feel the discrimination in society and have everybody turn against you So I have felt discrimination in other ways I‟ve experienced a lot of discrimination There may be a lot of obstacles like so much stigmatization and discrimination

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Appendix G: Transcript of Conversations with Participant 2 (Elsie)

Conversation 1:

(Note: “Conversation 1” actually refers to our second phone conversation, as our first conversation did not record properly).

E: Well, you said you- ah… you had questions you wanted to try to focus on?

D: Yeah. Yeah, um. I- so I guess we could just- we could start with those.

E: Yeah, if you want to do that.

D: Sure, yeah.

E: I‟ll just tell you real quick, I did meet with the attorney yesterday…

D: Mm-hm.

E: …and uh, he‟s gonna discuss it with his partner. He‟s gonna review all the information and… I was lucky that my husband could go with me. Um… so it wasn‟t just somebody that‟s an incompetent…

D: Right.

E: …zombi- zombified electric shocked mental health patient. I‟m trying to get an attorney to help me take some recourse.

D: Oh, do you mean you think you- having your husband there… gave you some legitimacy?

E: I think having him there kind of- yeah, it kind of helped verify the situation.

D: Okay.

E: He was able to say what he knew before I started and that they were only gonna do like twelve treatments is what he was informed of.

D: Right.

E: And how they continued to do it and… (unclear)

D: A lot – a lot of that stuff that you have trouble uh, remembering…

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E: Yeah.

D: Yeah.

E: And, so he could- he said “she‟s always asking me…” I don‟t remember a thing, I don‟t remember and, um… “she doesn‟t remember where we spent our wedding night and…”

D: Yeah. Yeah.

E: So it was- I think it was helpful to have somebody there that could verify some of the things that I had said.

D: Right.

(Elsie discusses some specific details about the parties involved in her legal situation for several minutes and we agree to leave this information out of the transcript to help protect her identity).

(1:11 - 4:45 omitted. Following this period, Elsie begins talking about consumer and survivor organizations that she has had contact with).

E: You know, S (mental health survivor organization) has no idea that I have association with um, C (mental health consumer organization) because they‟re totally against them.

D: They are, yeah. Yeah.

E: They receive some of their funding from pharmaceutical companies, which I don‟t believe – I think there‟s some bias there because the pharmaceutical companies are pro-medication.

D: Yeah.

E: But then again, the organization has to exist somehow, and this way they can be all over the country. I don‟t think they nec- necessarily think medication is the only way to go…

D: Yeah. I think…

E: … um, I think we really need to look at what they do with an open mind and S seems to think that they‟re just- they‟re out there.

D: That‟s- that‟s what I‟ve been trying to do, because I‟ve always um… heard about you know, C being stereotypically very conservative…

E: Mm-hm.

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D: …and obviously not the kind of radical organization that S is… (5:35) (D describes more about the present research project, explaining that it involves interviewing people of different viewpoints).

(5:52)

E: There needs to be some happy medium between the two - two type of organizations.

D: Mm-hm.

E: I mean, I‟ve gotten some ideas from people who are involved with S, but I‟ve also gotten some excellent help and support from people in C.

D: Yeah.

E: But I… I have to keep a – I can‟t really come out and say, “well somebody from S told me this.” I‟ve gotta be very careful with how I disclose the information that I‟ve obtained…

D: Yes.

E: …because I don‟t want to offend somebody that thinks that not- S…

D: Right, just mentioning- mentioning the organization might… (chuckles)

E: I can‟t say that S said this and- and C said that because S thinks that C is full of shit, and

D: Yeah, yeah. And vice versa (laughs).

E: and C thinks that S is a- a- some kind of a- whatever you call it, radical, conservative, anti…

D: Anti-psychiatry.

E: …anti-psychiatry altogether. So…

D: Yeah. Yeah… (phone noise interrupts conversation briefly). I was thinking that, um, my- my whole point, and- and the whole idea behind this is that, you know, nobody‟s voice should be shut out of the- of the conversation, of the dialogue, so…

E: Exactly.

D: …when it comes to making legislation, when it comes to um… you know, policy and everything, you know, I think we need to hear from S people, we need to hear from C people and it…

E: Exactly.

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D: …nobody should- should not get a say, is – is what I believe.

E: Right. Mm-hm.

D: Um… so that‟s what I‟m trying to do a little bit - through this project.

E: If people could just be a little bit more open-minded…

D: Open- yeah, I was just gonna say that.

E: …and realize, I mean there‟s some- I know one gentleman - he‟s in his 70s - has met with me quite a few times, (Elsie discusses some help she has received from a member of the aforementioned consumer organization regarding her legal situation).

E: …when I talked to (a member of a survivor organization) I can‟t ev- I- I- slip and I say the wrong thing, if I say “mental illness” or- I said “mental health” or I said something, and he got all upset: “don‟t- that‟s not the right term” and…

D: Mm-hm.

E: …started coming down on me for using the wrong, uh, calling somebody mentally ill and um… I was like, “oh, okay” (slight laugh). So I‟m kind of afraid to say too much.

D: Mm-hm.

E: So… why don‟t we get on with those questions that you wanted to get with…

D: Sure. Yeah. Um…

E: …instead of politics.

D: …(laughs) although it‟s- it‟s very relevant…

E: Yeah.

D: …um… to the whole discussion.

E: Mm-hm.

D: Um… last time I got a real- I got a pretty good sense of your background…

E: Mm-hm.

D: …and um, and I think, um, yeah, maybe with some of these questions, um… you may be repeating yourself, um… but it would be more, kind of focused toward particular issues.

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E: Okay.

D: Um… so the first thing, um… I typically ask people is just about- generally about their family history and cultural background (E: Mm-hm); anything that you feel is relevant or you think would be um… important, that has really shaped your experience either in the mental health system or just in general – any kind of family or cultural issues.

E: Um… I think knowing that there‟s mental illness – I don‟t know, you can leave my terms out if I‟m saying the wrong thing (laughs).

D: You can use whatever terms you‟re comfortable with, yeah, I‟m not (slight laugh)…

E: (laughs) I guess I‟ve always thought of it as mental illness. It sounds better than being a psychiatric n- nut! Um…

D: Well yeah, that‟s (slight laugh) it‟s definitely a step up from that!

E: (laughs) So, uh… there has been mental illness on my father‟s side of the family, from what I‟ve ob- obtained. I do have an aunt on my dad‟s mother‟s side that actually received an ECT back probably in the 50s.

D: Mm-hm.

E: Um… my dad can‟t- because he doesn‟t know much, he just- in his family if- if they need- they went to a hospital for mental illness, they were considered nuts.

D: Yeah. Yeah.

E: So, he- you know I said, “Well is it depression?” I said, “Did she- did she talk to things? Did things talk to her?” Trying to get an idea…

D: Yeah.

E: …by just asking him what the situation was, and… he- he said “No, she- she wasn‟t,” he- he called it “schizo,” he said “She‟s not schizo.”

D: Mm.

E: But um, she just wouldn‟t do anything and would sleep all the time, and from what he described it sounded like pretty severe depression.

D: Mm-hm.

E: And she would lose large amounts of weight and wasn‟t functioning very well. Um… and then my dad‟s sister‟s uh… one son um… was… I think schizophrenic and he used a lot of uh,

201 drugs and alcohol, and ending up um - killing himself. I don‟t know if it was purposefully or um, intentionally or not.

D: Through drug use?

E: Um… it was- he was on drugs at the time, but he rode a bicycle down a hill and ended up going into a car that was coming in the other direction.

D: Oh.

E: But he used a lot of uh, alcohol, cigarettes, and I don‟t think he was probably getting the kind of treatment that he needed. And then her other daughter, this- my dad‟s sister‟s um… daughter, uh… I‟m not sure of her situation, but she‟s on disability; and… I don‟t know if it‟s bipolar or what it is. I don‟t think she‟s schizophrenic. It‟s possible it may be manic depressive type issues. Um…

D: Okay. So, a- a number of cases of uh… of different, um, diagnoses.

E: Yeah – quite a few that…

D: Sounds like some depression, some…

E: Well - and then there‟s kind of a hush-hush that my dad doesn‟t want to talk about...

D: Okay.

E: …and that‟s his father who he doesn‟t remember very well, and except for an old family picture that I was looking at; he showed me, “That‟s my dad.” But my husband told me that my dad once said that he was seven or eight when his dad died. But there‟s some…

D: Ah.

E: …I remember something, that- you know my dad said it was a stroke…

D: Hm.

E: …but there‟s also, I don‟t know where I got it, or somewhere that he might have been in a- in a psychiatric- or they called it insane asylum…

D: Okay.

E: …at one time.

D: It sounds like your dad was just uncomfortable talking about the information.

E: Yeah, because he didn‟t hear about it till he was older…

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D: I see.

E: …and there was a lot of shame for him to admit that his father was – a- a nut. Er…

D: Mm.

E: …„cause it was very hard on his mom to have to raise all the kids by herself.

D: Yes. Yeah.

E: So there‟s definitely mental illness, and then the alcohol abuse is on both sides of the family.

D: Mm-hm.

E: My mother‟s… her mom‟s brother was a- a raving alcoholic. Um… my mom… my mom and my dad both drank heavily when I was younger. Um… not enough that they- that they couldn‟t work, um… but when I visited my aunt last November, she did tell me that she remembers somebody finding alcohol in my mom‟s purse when she was in high school…

D: Mm.

E: …in a flask. So, as I said to my husband, “Where would somebody that age get a- get alcohol?” and he‟s not sure that they might not have had the same laws.

D: Oh, yeah, I‟m not sure.

E: So… whatever - I guess what I‟m trying to say is there‟s definitely alcohol abuse…

D: Mm-hm.

E: Um… my dad still can drink in moderation, but he‟s- he‟s almost 85, so I think just because of his age, he can only- like when he‟s here we‟ll have a glass of wine with dinner, and sometimes he‟ll have a beer, but he doesn‟t drink like I vaguely remember when I was younger, all- you know, every evening having a few beers.

D: Yeah, yeah.

E: But, my mother definitely abused it. Um… I still remember finding large containers of uh, vodka in her later years.

D: Mm-hm (barely audible).

E: Um… so she was definitely- had issues with the alcohol.

D: Okay.

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E: And… to the best of my knowledge, um… she probably- I have no doubt that she drank when she was pregnant with me as well as my little sister…

D: Oh (barely audible).

E: …who has lots of learning disabilities, actually a lot more than I do, and… as well as emotional problems which she refuses to seek any help for.

D: Yeah?

E: She- she thinks now she has this new physical ailment that uh… is going around. Uh… she went to some specialist to get the diagnosis – fiabra myalgia (fibromyalgia) or something.

D: Oh, okay. Yeah.

E: So she‟s got the backaches, the headaches and the…

D: Yeah.

E: …the fingernail aches and the butt aches and the… whatever part of her body aches.

D: Uh-huh.

E: And… she doesn‟t get support from medical doctors because- you know they‟ll look at her and do blood tests and there‟s nothing there. So she‟s found a chiropractor that‟s basically just taking all the money that she barely ex- makes on, and she makes like ten dollars an hour…

D: Mm-hm.

E: …and works four days a week. So she barely exists when she pays her rent with her bills. Um… but- it‟s all physical with her, even though there‟s times where she‟s on the couch nonstop… or all she does is watch TV. She…

D: Mm-hm.

E: …used to abuse alcohol; now she pretty much just abuses f- food. She‟s two hundred and… probably sixty pounds, probably about five… seven. Um, she‟s- she‟s a big- big girl

D: Yeah.

E: And, uh… so she- she‟s – she‟s not drinking anymore. She used alcoholic‟s anonymous and quit the drinking. And she used to smoke and she quit that, but now she‟s got all these physical ailments.

D: Sounds like…

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E: And you know- I shouldn‟t- I shouldn‟t act like they‟re not true, but she always- from what I can remember when she was little, something was always wrong.

D: Mm-hm. Mm-hm.

E: She always had problems, kind of a- what I learned later, you could actually say hypochondriac.

D: Mm-hm. Yeah.

E: So, um… both of my brothers, my older brother who‟s 53 or 54, and my other brother who‟s probably 52 or 51, um… they both… ______, the older brother, still drinks, mostly on weekends. Um… but he- you know, works full time and was in the ______(military organization) for 28 years. He‟s gonna retire in April because of a heart condition. But- I mean he drinks large amounts on the weekends. It‟s pretty obvious when I talk to him, he‟s… I‟m sure he says things he regrets because he‟s way out there.

D: Mm.

E: Um, my brother in ______... used to drink, smoke, and… marijuana and I‟m not sure what else. But he got into the running, because of all the running I was doing, quit smoking, and then started having hip problems, which is what I have had. And… he started getting into the cycling, but it‟s not… he- he‟s in his fifties and he‟s- he was riding in excessive amounts, um… 50 and 60 miles everyday after work, and…

D: Wow.

E: …then weekends would ride a hundred miles and do these centuries around ______. He l- he still lives in ______.

D: Mm-hm.

E: And… he, uh… even had to have a partial hip replacement last year…

D: Hm.

E: …and still goes out and rides.

D: Wow.

E: I mean he‟s… there‟s- I have no doubt that when I was competing even professionally that I would take it to extremes, which was just a way to get a high off of the endorphins.

D: Uh-huh.

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E: Or another means to escape uh, the reality or the past of my childhood.

D: That- that seems to be a theme that you‟ve brought up, um…

E: Mm-hm.

D: …several times with regard to your family just trying to avoid, um… problems, or- or escape things…

E: Yeah.

D: …um, either through substance abuse, or um… you know, or even just not acknowledging, um…

E: Denial. Mm-hm.

D: …iss- denial of issues like depression or- like with your sister, and…

E: Yeah.

D: Um… what um… you said, “Escaping things from your childhood.” Were there particular things...

E: Um…

D: … from your childhood that were particularly traumatic or particularly, uh… difficult.

E: I- I had one situation of child abuse where a neighbor‟s uh… brother exposed himself to me and wanted me to…

D: Oh…

E: … play with him, but- as far as having to- I- I- didn‟t

D: Mm-hm.

E: …and I don‟t- nobody ever told me not to but was I just disgusted and thought this was weird.

D: Yeah, you- you kind of knew something was wrong there.

E: Some- something was wrong, and I think… (unclear)

D: How old were you at the time?

E: Um… I was probably six. Five or six.

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D: Okay. Mm-hm.

E: And I mean- before then the only time I had seen a- a male body part was by accidentally walking in on my brothers…

D: Mm.

E: …uh… going to the bathroom. And then I remember occasionally being in the shower and peeking out to see one of my brothers and would ask my mom, “Why do women have to sit down and guys get to stand up? That‟s not fair.”

D: (Laughs).

E: “That looks like more fun,” I‟d say.

D: (Laughs).

E: And she‟s like, “Well that‟s- that‟s just the way God made- made- made- boys, and women have a different part like cars have different parts, and you‟re supposed to sit down” (laughs).

D: Heh-heh.

E: So, I mean but- till- till that uh- uh- being exposed to something like that – I mean- and that man, I still remember was erect…

D: Mm-hm.

E: …um, wanting me to play with him.

D: Did you- did anybody else find out about it? Did y- did you let any of your family members know?

E: Um… I don‟t know if I did immediately, or I might have when I got a little bit older.

D: Okay.

E: I think I might have said something. I still know the- the man‟s uh- sister. And um… I never have come right out and told her what her brother did, but I- I mean, my dad, my mom both knew.

D: Mm-hm. Do you remember what their reaction was when they first found out? Or… general reaction?

E: Um… pretty disgusted and- and… uh… they - brought a lot of caution to me that if that happens again to let them know right away…

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D: Okay. Okay.

E: …and that person was wrong, and- um… I- quite a bit of compassion that that‟s something that somebody shouldn‟t do, and they- they may…

D: Mm-hm. Clearly acknowledging that- that he was in- he was in the wrong and that you did the right thing.

E: Yeah. Yeah, and that he may- may- he may have a problems upstairs.

D: Uh-huh.

E: Some- something to that level. But- I mean there wasn‟t anything ever said about it. It was pretty much hush-hush-hush.

D: Mm-hm.

E: Other than that, um… living in an alcoholic family.

D: That‟s th- the main thing, you think…

E: That‟s the main thing.

D: …that was… most difficult?

E: Most difficult and then um… I still remember one lady I would love to get in touch with, who meant a lot to me and that‟s somebody that my grandmother hired to help my mom do housework.

D: Hm.

E: And- which I thought was kind of - when I look back on it - why would somebody help my mom do housework when she didn‟t work when I was growing up.

D: Mm…

E: So th- I mean, there was something…

D: You‟re thinking…

E: …there w- there was something- issues going on. It was a small three bedroom house…

D: Mm-hm.

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E: …with one bathroom. There was some reason why my grandmother would pay – and I think this lady only got like ten dollars a day and would come once a week. (D: Mm-hm). I wish I could find somebody to come help me clean right now for ten dollars a day.

D: Yeah, that‟s a bargain.

E: Yeah, but her…

D: So you‟re thinking, something having- something having to do with the alcohol abuse or depression maybe?

E: I think alcohol or depression or something.

D: Yeah.

E: But- but my grandmother, when I lived with her, she would never talk about it. Um… she even helped out the family financially. I found that out when I was a little older, when my mom had me go to the bank one time and do a deposit. I looked in the envelope and there was a check from my grandmother. I don‟t remember the amount, but I remember asking my mom, “Why- why does grandma give us money.”

D: Mm-hm.

E: I mean, sh- I got money from her for Christmas and for my birthday maybe, but why would she give my mom such a- a big check? And that was to help pay bills. So see my dad wasn‟t making enough money to make ends meet, so there was a lot of financial stressors there.

D: Mm-hm.

E: But I think um…

D: Do- do you remember having a sense of that as a child, that there was financial problems?

E: Yeah, it was- it was- it was stressful um…with- er- I- I don‟t recall details but I‟m pretty sure there was quite a bit of arguing between my parents.

D: Mm-hm.

E: Um… never any physical fights or anything that I can remember that was totally out of the ordinary. But some verbal fights. Um… my dad will come right out and say that I wasn‟t planned, and I was an accident. And… my sister was definitely… I‟ve heard people say, not wanted, and an accident. My mother was extremely upset about it - and she probably drank even more heavy with my sister. Um… she – for some reason – couldn‟t use birth control pills or they weren‟t- I don‟t remember. My sister‟s 38, so how m- whatever year that would have been, I don‟t know. Um…

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D: Yeah. Uh…

E: …when that was but I don‟t know what they used back then for birth control, but a lot of families- I just, from talking to my husband, people just don‟t talk about… uh, there‟s some taboo about sex…

D: Mm-hm…

E: …when- I‟m not saying that religion- I don‟t care what religion you‟re in. Sex is something that animals, humans, canines, do.

D: Mm-hm.

E: And kids need to be given instruction on what to do and what not to do… in a educational way where it‟s not a wrong thing to talk about. Because I- I get the impression from my husband, because he was home-schooled that they never talked about sex. He was brought up that that‟s just something you don‟t talk about – that‟s private.

D: Mm-hm.

E: Which… I can kind of respect, but then again, what about the- the sexual uh… transmitted diseases and…

D: Yeah.

E: …the sexual abuse that can happen. Kids need to know that if they are approached by somebody that that‟s not right. They shouldn‟t touch you in private places. You don‟t have to get into details about the body part – and tell them that- what sex is, or… making love is, or how to reproduce, but you need to let them know that these things are wrong. Um… I just get a little angry that- that people didn‟t know, and that my- my parents didn‟t have more family planning ability.

D: Mm-hm.

E: Um… because I mean, I‟m sure my sister realizes that something‟s wrong with her, from a… she was considered learning disabled from as early as I can remember.

D: Oh.

E: I‟m not sure what her exact problems are um… she can spell and read better than I can so… (laughs). She must have some un- other underlying disabilities.

D: Mm-hm. Do you remember how those kinds of issues were handled in the family – learning disabilities, or even later on, um, you know… al- alcohol use amongst yourself and your siblings?

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E: Um… Um… I talked to my brother the same day- evening that I talked to you (describes their conversation briefly) …but he thinks, um… medicine and psychology is all a bunch of bullshit, and…

D: Your brother, you mean?

E: Yeah, my brother, my oldest brother. Um… and I shouldn‟t have- I shouldn‟t have had the treatments to begin with. He thought they went out when One Flew over the Cuckoo‟s Nest did.

D: Mm-hm.

E: And… I don‟t have a leg to stand on. I- he said “I‟ve heard you say that you signed a consent to do it.”

D: Mm.

E: Um… and I said to him, I said, “I don‟t deny that I signed a consent, and yes, the treatment probably got me out of a s- severe depressed state at various times. What I‟m saying is that it was overused and misused.”

D: Mm-hm.

E: And he‟s like, “Oh.” And I said, (brother’s name), I said, “I don‟t have a problem saying that – I‟m uh… I‟m not a recovered alcoholic. I know that I have alcoholic and addiction issues.” I said, “I have to be real careful how much alcohol I consume. (D: Mm-hm). Especially if I‟m in a depressed state or even in a manic state that I don‟t use a substance to try to medicate what‟s happening to me physiologically, and ask myself, is this a physiological problem that‟s happening, or is it an emotional problem that‟s causing the physical reaction.”

D: Mm-hm.

E: And ask myself, “Am I using- am I wanting to drink more- more tonight because of escape reasons, or do- is it „cause I enjoy the wine, or is it „cause of- wh- what- what are my reasons?”

D: Right, right.

E: I have to be extremely careful. But because of so many ECT treatments and not having any memory, I don‟t even remember the one time I went to treatment for alcohol, um… abuse other than I went somewhere in northern (name of state). And that was back in the… in the 90‟s- late 90‟s for 30 days. I remember there was a period of time where I went to Alcoholics Anonymous meetings. Um… I had a real difficult time controlling my drinking, especially when I was depressed because of the- the euphoric effect that I would get, but then after a certain amount it would just come- make the depression even worse.

D: Mm-hm. Yeah, yeah.

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E: And I would get into a suicidal state, and I would save pills up and drink too much and have too many pills, and a lot of times I wouldn‟t tell anybody until I was realizing I was doing the wrong thing, and then it was too late, and I‟d be in the emergency room. And I- I‟ve had my stomach pumped probably, I can remember twice. I mean, I even went to Mexico and bought Halcion, which is a very potent sleeping pill…

D: Mm-hm.

E: …because you can buy it over the counter, and… would go to different pharmacies and get quite a few bottles, „cause I figured if I'm going to kill myself, I'm just going to drink some alcohol and go to sleep. I'm not going to buy a gun and shoot my brains.

D: Mm.

E: So, I mean, there was many times where I was using alcohol in the wrong way and I still realize that today that I'm walking a very fine line, and even said to the psychologist that I see, a week ago, I said, “I know that I‟ve been under a lot of stress with my husband‟s, um, work, currently, and with this, trying to get something done with the ECT abuse that I un- underwent. And, it‟s affecting my sleep, and um…” I said, “something‟s wrong when I can‟t even finish one glass of wine.” And she kind of looked at me funny, and I said, “Well, I- I have no problem and you know that I‟m an alcoholic.” And, she‟s kind of, “Yeah.” She said, “But normally, you usually drink one or two glasses of wine.” And I said, “Yeah, but lately it‟s- for some reason I can‟t even finish a glass of wine, I‟m in so much stress.”

D: Mm-hm.

E: So… that‟s kind of weird. I can‟t quite explain what…

D: You‟ve- yeah, your own- your tolerance has just changed. I…

E: I guess my tolerance has changed, but there‟s something about, a… an altered state of mind…

D: Yeah.

E: … which has been induced by myself numerous times in my life, whether it was through athletics, or whether it was through, um…the surfing I did nonstop for a long period of time when I was in (name of state) or…

D: Yeah…

E: …whatever I used, um… the only drugs I ever had uh- really used was, I tried Cocaine once, and it didn‟t do anything for me, so I never did it again…

D: Mm…

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E: …and I was an athlete, so I wouldn‟t smoke the pot that I had some- knew people that had used that… „cause I didn‟t want to have my lungs ruined like my mom‟s.

D: Mm-hm.

E: Um… so it was usually just alcohol and medications that a psychiatrist would prescribe is what I would abuse. Or I would give them certain symptoms and then they would medicate it and then I would triple and double the amount of medication that I was given…

D: Mm-hm. Mm-hm.

E: …to a- to- to obtain a um… altered state.

D: Yeah.

E: And now – I- I don‟t- can‟t tell you why or what‟s happened in the last year – something about not being in control of my feelings and my emotions… scares the living shit out of me.

D: Well that‟s- that‟s not…

E: …I find it- I find it extremely frightening to think that I actually had somebody administer shock treatments on me and took such large amounts of medication over the last uh… let‟s say 15 years.

D: Mm-hm. Well, given what you‟ve gone through, that doesn‟t sound terribly surprising. I mean- um… when you‟ve… perhaps uh… more than- than anybody has- has experienced the not being in control, um… and- and to the- to the extent of you know- not having memories.

E: Yeah.

D: Um, so that- yeah, it doesn‟t sound that surprising that that would become something y- you would become really uh… you know- averse to.

E: Yeah, so I think it‟s- it‟s the alcohol where I‟ll drink and… I‟ll drink one or two glasses but it‟s- it- I drink it with my husband when he‟s here. Um… or I‟m fixing dinner and I know he‟s gonna be here soon I might drink one glass while I‟m preparing dinner, and sometimes during dinner I don‟t even finish it and I‟ll say “Do you want the rest of it.”

D: Mm-hm.

E: Or I‟ll pour it in a container and put it in the refrigerator, which is very unlike habits that I had years ago…

D: Mm.

E: …and I think it‟s because I was overmedicated and not dealing emotionally with what…

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D: I see. Yeah.

E: …issues I needed to.

D: Yeah.

E: And now it‟s- with the fear of the memory gone, last December, and the last few months I was in a definite depressed state, and I‟ll tell you, it was real hard to ask myself, “What do I really- why am I really staying alive? What do I really have?”

D: Mm-hm.

E: And you start asking yourself, “What- what purpose in life do I have? What- what is the reason for me to be here? I mean, what- what is my place?” Um… and then you realize that you have no real history that you can recall details of. You have no real recollection of your athletics or your- your education, or um… even your honeymoon or your marriage. I don‟t remember my wedding vows with my husband. Um… I don‟t remember conversations or trips that we‟ve taken. Um, I- I feel like I‟ve been more than… I‟ve- I‟ve never been sexually abused, other than the one situation I told you about…

D: Mm-hm.

E: …but as far as like physically abused or uh… sexually abused, I haven‟t. But I can tell you that I think I have a lot of compassion for any kind of mental and physical abuse because of what I‟m missing right now. It must be awful to be violated and that‟s- that‟s how I feel. I‟ve been- I‟ve been violated. Somebody stripped me of part of my life.

D: Right. Right.

E: Now, part of it wasn‟t good. I‟m not saying that, you know, that I want to know all my details of my past. But, how am I supposed to go on if I can‟t work through the- the issues of my past, and now I- I have very little recollection of my past.

D: Mm-hm. So it‟s like the- the good and the bad were taken... w- were taken out.

E: Right, exactly. But there wasn‟t that many really bad things, other than just the alcoholism in the family and…

D: Yeah.

E: …um, the being made fun of as a- as a person with a learning disability.

D: Mm-hm.

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E: Um… but- but the good that was there is just- it‟s all… like I told my husband the other night, I said, “I- I really- you‟ve supported me a lot over the last years, but I need your support even more now…”

D: Yeah.

E: “…because I‟m- I feel like I‟m starting over.” And he was like- he even said, “What?”

D: Yeah… yeah.

E: And I- I explained to him, I said, “Everything that we do and say now, I really have to try to find a place for it, because- to make sure that I remember the conversation,” because of the lack of my… what do you call it? The memory process you do from day to day… short-term...

D: Mm-hm.

E: …and then I have no recollection of long-term, so everything I put in, hopefully now is gonna remain as part of my current life… which- which I- I- I need some quality, and uh…

D: Yes. Yeah. Well that‟s…

E: I- I don‟t want to be like Ernest Hemingway and just blow my brains out. I‟m gonna do something about the abuse that I went through with the ECT.

D: Mm-hm.

E: And like I said if I can‟t move a… a small amount, I‟m gonna- I‟ll take it- I‟ll take it public, and I have no problem writing articles to editors…

D: Mm-hm.

E: …and getting on TV and saying what‟s happening and being done in this small town in (name of state), um… with the lack of regulations, um… you know I- my husband‟s a little- was a little shy about me going forward from a legal standpoint, because he‟s like, “Well, people are gonna know. People are gonna find out.” And I‟m like, “I don‟t care.”

D: Mm.

E: I- I ha- I don‟t have any problems. I‟m tired of people living with mental illness as being something you can‟t talk about.

D: Mm-hm.

E: Um, where (name of mental health survivor organization), I guess it‟s not a mental illness. So th- they don‟t really have anything to talk about (slight laugh).

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D: Or they‟re talking about uh… talking about it in different ways, I guess.

E: In- in different ways. But I have no- no problem whatsoever coming up and saying that this is a- is a- problem.

D: Mm-hm.

E: And even- even in our churches, um… Even my- the church I go to now, the pastor doesn‟t even know what ECT is.

D: Mm-hm.

E: Um… if I‟m in the hospital, he‟ll visit me, but he doesn‟t know what to say. He hasn‟t had training in psychology enough to be dealing with a congregation that could possibly have mental- psychological issues. They need to have better training so they can recognize people in their congregation, so they can get them the treatment. I‟m not saying they need to do the treatment, but they can give them the referrals.

D: Mm-hm.

E: And I don‟t think even… there is just some denial about the alcohol, drug and mental… certain sexual issues that people just keep hush-hush.

D: Yeah. Yeah.

E: And- and it just- it just pisses me off. I mean, at church they‟ll say, you know, “Let‟s pray for so-and-so, they‟re in the hospital, they broke their leg.”

D: Right.

E: …but somebody‟s in a psychiatric ward, because they attempted suicide but you don‟t- you don‟t bring that up.

D: That- that doesn‟t get mentioned.

E: No. Uh-uh. Don‟t talk about it.

D: Wow. I mean, even if you- whether you‟re conceptualizing it as a mental illness or just- you know, a social problem…

E: Right.

D: … just to- I mean, the worst thing at all is just to hide it, you know, and not to say anything about it.

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E: Right, and- and I think that‟s what‟s been hard on me over the years, is that it‟s- it‟s hush- hush-hush, um… Even with my husband‟s family, um… he- a lot of times doesn‟t have good contact with them, and doesn‟t talk to them…

D: Mm-hm.

E: …but if they would call, he‟ll say to me, “Do you want me to let them know that you‟re in the hospital.”

D: Mm-hm.

E: And I‟m like, “Do whatever you‟re comfortable doing.”

D: Yeah. Yeah.

E: And- and then I told him a few weeks ago- „cause I did go into the hospital last November and knew I needed to get off some of the medications and knew something wasn‟t working, „cause I was heading downhill pretty fast… and… was on so many of those uh… Benzodiazepines, that addictive uh, drug…

D: Mm-hm. Mm-hm.

E: …that something wasn‟t right. Um… so that‟s when I got all my medications went from 20 pills down to a total of like 4 pills.

D: Yeah.

E: So I was definitely being overly medicated, but I- I didn‟t have a problem with his mom. She said, “I hadn‟t heard from you for a couple weeks.” Um… I said, “Well, I was in the hospital,” and she says, “Oh.” Kind of like, “Oh.”

D: She didn‟t want to talk about it?

E: I don‟t want to- I don‟t want to- I don‟t want to talk about it.

D: Well that‟s- that‟s interesting that you‟ve experienced that in your family…

E: Mm-hm.

D: …and in your husband‟s family. Um… and at the same time you recognize it in… in society as a whole. Not just, you know, not just limited to your family, and it‟s…

E: Right.

D: …you‟ve become- perhaps having gone through it personally, you‟ve, you know, had more awareness that, hey, people really, uh… in general keep- keep this quiet.

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E: Yeah well, I- I look back and I think, why in the hell did I major - „cause I don‟t know - why did I go into psychology, of all things?

D: Mm. Yeah.

E: And- and I really- because I can‟t remember what my feelings were or why I did that…

D: Mm-hm.

E: …um… I knew I had to cut up and open up cadavers and…

D: Right.

E: …do some really gross things to get my BS in psychology. Um… but I can‟t remember why I- why in the hell did I pursue psychology?

D: Mm-hm.

E: And the only thing I can come up with now is, I was having a lot of frustration emotionally with my own personal feelings and physiological things that were probably going on, with the going up and down, which probably was occurring years in advance. And if I wasn‟t running thirty or forty, fifty miles a week, I would have mood fluctuations…

D: Right. Right.

E: …and I thought something was wrong. I thought it was all psychological.

D: Well, you wouldn‟t be the first person to go into psychology for that reason. I know it‟s kind of a stereotype, but, you- you know, it‟s true to some extent.

E: Trying to- trying to figure out what‟s wrong with your family…

D: Mm-hm. Mm-hm.

E: …when the- the worst part about it is, you know there‟s nothing you can do for anybody else if they don‟t want help.

D: Right. Right.

E: You‟ve gotta be willing. Or the- not- not- the person has to be willing before you can help them.

D: Yeah, I mean, not everybody takes that attitude, but I- I agree with you on that.

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E: I mean, you can put- it‟s just like you can put food in front of somebody or put food in front of anything…

D: Mm-hm.

E: …animal or whatever, but if they‟re not hungry you can‟t guarantee anybody they‟re gonna eat it. So…

D: Mm-hm. Yeah. Well, one of the things you talked about kind of leads into another question that I had, um…

E: Mm-hm.

D: …about uh- since I take a very relationship-focused view toward, uh… psychological problems in general…

E: Mm-hm.

D: …um, I think relationships are very tied to the problems people have and how people recover.

E: Mm-hm.

D: Um… I- just- you don‟t even have to go into that much depth, um…

E: Mm-hm.

D: …about some of the most important relationships in your life. You mentioned your husband as one. I- uh… I assume that‟s- that‟s probably one of the biggest ones, um…

E: Uh… I would say my husband and then my- the animals in my life. Um…

D: And- oh, of course! Yes.Yes. (In our previous interview and over email, E has mentioned that her two dogs are very important members of her family, and have been very therapeutic for her to have around). But any others you want to talk about, that you think would be…

E: Um… the relationships with my coaches when I was like six and seven, when I was…

D: Okay.

E: …in- having the difficulty in school in second and third grade…

D: Mm-hm.

E: …and on through elementary and junior high.

D: Like with- with the learning disability stuff?

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E: Yeah, with the learning disabilities, um… and then I think the stressors of home life…

D: Uh-huh.

E: …and finding something where an adult figure would tell me, “Do this,” and I would do what they- they said…

D: Mm-hm.

E: …and then I would come home with a ribbon or a trophy. So there was a certain – you give this person respect…

D: Mm-hm.

E: …you do what they instruct you to do, and you- you come home with ribbons, trophies… and my family- my mom and dad, even with the- some of the alcohol problems, still attended all my swim meets…

D: Mm-hm.

E: …and encouraged me to, um… compete, and were extremely proud of what I was doing.

D: Mm-hm.

E: But, when I look back, I still have the anger that- of the denial- the denial that they had with the learning disabilities. And the school, um… which is (name of school) up there in (name of city), which is a very ritzy community, um… they just ignored, ex- except for holding me back in second grade. Um… it was like because I was so good in sports, that nobody bothered to- help me how to learn and read and write.

D: Mm. Yeah, well you said even that- going into college with a scholarship, right?

E: Yeah.

D: That was pretty much the thing that was focused on.

E: Yeah, it was just my athletic abilities. You know, wh- what about the other problems that you might be having?

D: Right. Right.

E: So- but the coaches in my life, um… were definitely significant…

D: Mm-hm.

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E: …all the way through high school, into college. Um… I would say… as much or more than my own father.

D: Okay.

E: My grandfather, um… my mom‟s stepfather, uh, was an electrical engineer at (name of a college) and they lived in (name of foreign country), um… doing a school program over there for two years, and I got to know a lot of international students, and I remember that as a very positive thing in my life in developing relationships with people from other countries and learning to respect people with different clothes…

D: Mm-hm.

E: …the way they talk, the way they dress, the way the described themselves, um… just being exposed to that gave me great respect for my grandfather…

D: Mm-hm.

E: …which I correlated to his possible education, which was encouraged- which what is- what encouraged me to go on and try to get more education and not let people keep calling me a dummy.

D: I see.

E: So, I think, we weren‟t emotionally real close, but there was a certain respect there that I had for him. Um… and then my grandmother, because she didn‟t use alcohol was pretty supportive, but then, at the same hand, she was very much in denial about the family problems – the alcohol abuse and that kind of stuff.

D: Mm-hm. Mm-hm.

E: Um… but real significant, I would say, alls I can really, in detail, emotionally say is um… a few of the guy friends that I had, um, when I was competing in the 80s, um… that were just like friends that I- help- we‟d train together. Some of those relationships were… meaningful because they were, on an emotional level where you- you spend so much time with somebody every day that you start talking about family, personal things, experiences. Everything‟s not just focused around your training; you become- you know, partners.

D: Yeah.

E: Not intimately, physically partners, but the relationship aspect, and emotional aspect was extremely significant.

D: Mm-hm.

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E: So, I mean- I really miss that, and then, not remembering the kind of stuff me and my husband talked about before we were married. Now it‟s very difficult because I‟ve realized a lot of his… uh...... lacks of communication, that need a lot of- need a lot of help and- and… I need to be patient and not just try to fix him overnight… but do it in little itsy-bitsy steps without saying things in a way that I- that I hurt him. Um… really be careful about how I say things, not to try to direct it at the way he was brought up or- or say something negative about his family. But just his body movements and the way he holds his arms. Uh, I‟ve talked to Doctor (name of her psychiatrist) I mean, from what I remember, certain body languages- like you‟re guarded or you‟re defensive or you‟re…

D: Mm-hm.

E: Things like that, and I- I find him to be… he‟s a very quiet person; we‟re very much different in that way. But he just doesn‟t – get into a lot of conversations with people. He‟s just a pretty quiet… quiet person. You really have to ask him, “How are you feeling? What do you think?”

D: Mm-hm.

E: And when I ask him, you know, “What do you want for dinner,” it‟s like “Whatever you want. It‟s- it doesn‟t matter.” And I said, “Well, what haven‟t you had that you would like?” (?)- and it‟s like I have to keep prodding, “What do you want to do? What do you want to do?”

D: Mm-hm.

E: And I need to work on that, „cause I- I think a relationship needs to be 50-50, and both people need to put into it - um… emotionally – I‟m not speaking financially…

D: Right. Right.

E: …or mo- monetarily, but um… it- it takes two people. So… I don‟t know.

D: It sounds like you‟re- you know, just kind of, uh… working out the two of your different styles in relationships…

E: Yeah

D: …and- and trying to make it- you know, make it equal.

E: Right, well „cause it‟s- everything was so focused on mental health type stuff the past few years, um… and abusing alcohol and ending up in the hospital, and uh… that I don‟t re- and then the fact that I don‟t remember anything, I… I just feel lost…

D: Mm-hm.

E: …and it‟s um, it‟s- it‟s- it‟s frightening. So everything‟s like new.

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D: Yeah. Yeah. I just- I- you probably told me this already, but I don‟t recall…

E: Mm-hm.

D: …how long, um, uh… you had been married before, um…

E: Um... I‟ve never been married before.

D: No, I mean- at- h- how long have you been married to your husband?

E: Oh, how long have I been married?

D: That‟s what I meant.

E: It‟ll be, uh… five years, a- uh… April- April 15th.

D: Okay. Okay, so you were… married when you were getting the ECT?

E: I figured out yesterday before I saw the attorney that I had …

D: Yeah.

E: …approximately 18 treatments before our wedding date.

D: Okay. And how long did you know him before that?

E: Uh, two years.

D: Okay. Yeah, I think you did mention that before.

E: Yeah, I might have.

D: Um, the next couple of questions I have, um… you‟ve probably covered in one way or another (slight laugh).

E: Mm-hm.

D: They‟re just in general about your experiences in the mental health system.

E: Mm-hm.

D: Um… but I‟ll just- l- go through them fairly quickly…

E: Okay.

D: …that way we can finish up with these today.

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E: Okay.

D: Um… just in case we missed anything. One was just about how you first got involved in the mental health system – your first experience with any kind of treatment for… for anything whatsoever, and I- I don‟t know if it was… for you it was for alcohol initially, or depression, or both?

E: Um… well – I don‟t really remember, um… I think the first time that I actually talked to somebody on a… issues regarding depression and emotional stuff was when I… after I- when I was competing professionally, um… seeing the sports psychologist.

D: Okay. Okay.

E: Probably the first time that I said to somebody, you know, talked about the mood fluctuations.

D: Mm-hm. Was that in college or post-college?

E: Um… that was before college.

D: Before college.

E: That was after- after high school, and…

D: Okay.

E: When I was racing professionally.

D: Mm-hm. Okay, and you said that was about mood fluctuations?

E: Yeah, I just mentioned the- the mood; the issues with my mood, and I remember asking her about ways that she would suggest that I try to cope with the fluctuations in my mood. I don‟t remember any details or anything.

D: Okay.

E: I don‟t know.

D: Do you- do you remember how many times you… you saw her, about?

E: Um… well she‟s in my athletic resume, so I- she was real supportive. I think I saw her at least, probably once a week.

D: Okay.

E: Always before competitions.

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D: Once a week for a year, or a couple of years?

E: Uh… quite a few years, actually.

D: Quite a few years?

E: Yeah.

D: Okay. Um… and how about after that, what- wh- after… what other experiences did you have, um… with any kind of mental health type treatment?

E: Um… I- you know, I really don‟t remember any, um… until I moved to (name of the state where she lives).

D: Okay.

E: And then after I was here the summer – I think it was ‟96 – I started having problems with depression and wasn‟t working anymore (D: Mm-hm). And, um… that‟s when I ended up in the hospital for some suicide attempts.

D: Okay.

E: And then started seeing the counselor, in…. the small town of (name of town in the same state).

D: Did you… was it your choice to enter the hospital? Or…

E: Um… you know, I- I don‟t remember…

D: Okay.

E: … even what the details of it were

D: But it was for suicide, though… initially?

E: Yeah. I- I think it was, I had taken a large amount of pills and had drank a lot of alcohol.

D: Okay - alright (barely audible). Do you remember about how long you were in the hospital for?

E: Um… I- my husband did say to the attorney that I had said to him – which is kind of relayed information…

D: Mm-hm.

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E: …because he was asking about my past, and I just kind of shook my head and then (her husband) said well, “Before we were married, she said this, she said that, she said this.”

D: I see.

E: So it‟s kind of- was kind of nice to hear this stuff yesterday that I hadn‟t remembered.

D: Mm-hm.

E: Um… but he said that I had been sent to the hosp- the- the hospital, um… a few times before we were married – um, for depression and once they said I was manic. And… I described it as a high anxiety level. I didn‟t realize at- at the time that it was, you know, manic type stuff.

D: Mm-hm.

E: Um, and that was probably in ‟97, ‟96. So that‟s when I really started bouncing around with the depression. Um… I got sent to the state hospital, probably twice between ‟96 and 2000. And I think those days, my husband said I was there – I told him once for three weeks.

D: Okay.

E: So… I don‟t know the particulars; the attorney asked me, did I know what for, or… this and that, and I- I- I- I don‟t remember. I knew that, uh… when I was there – because I had worked in the mental health field after I‟d got my bachelor‟s degree – what to say and what to do, just like I did in my sports. Um… to follow the rules and get the- the levels and get the privileges.

D: Mm-hm.

E: And, one time when I was there – I remember because for some reason I… I don‟t know details, but my sister reminded me last summer. She can‟t believe she did it, but I had her come visit me and bring a- a tarp, „cause she had a truck, and I had levels where I could go out on the hospital grounds…

D: Mm-hm.

E: …and had all my stuff together that I wanted, and… walked out to visit her and got in the back of her truck and covered up with the tarp and had her take me back to (the town where she lived) (laughs).

D: (laughs).

E: So, as- as some say, I escaped from a state hospital.

D: Yeah – yeah. (laughs).

E: So, well that‟s my athletic background. I th- It‟s kind of humorous, actually.

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D: Yeah, yeah.

E: I mean, how- how many people actually escape from a state hospital.

D: (laughs).

E: So and- you know, I definitely have some manipulative skills, um… in my skills.

D: Mm-hm.

E: I- I would rather not look at them as being manipulative, but better- say- having a nicer term would be to say coping skills.

D: Mm-hm. Or you- you could call them resourceful.

E: Right. That‟s- just that you use in any situation that you‟re up against in life.

D: Yeah.

E: If you don‟t like where you‟re at, what can you do to change it?

D: Yeah. So there was something you didn‟t like about being in the hospital, that…

E: Yeah, I didn‟t like the- I mean there was a lot of very- people that were very emotionally disturbed.

D: Uh-huh.

E: And… I didn‟t understand – other than my training in college – what was happening, and- just didn‟t feel that I could talk to anybody, or relate to anybody.

D: The people that were there and the staff, you‟re talking about?

E: The- mostly the people there, and the staff you saw so infrequently that…

D: I see.

E: …you didn‟t get much time to talk to. And it was more like a housing place rather than a place where you actually talk about what you're feeling or why you got there or what you want to do.

D: Okay.

E: Because there were many times – my husband said yesterday that… that the hospital in (name of a town in the state she lives) released me with a whole bag full of medication…

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D: Mm-hm.

E: …that I brought in, or he- or he must have brought them, or got out of my house where I lived.

D: Oh, okay.

E: But they discharged me and gave me all these pills, and he said I was there for a suicide attempt and hadn‟t even been in there for five days, and they discharged me. Well I don‟t remember the details, but I‟m sure if they asked me if I‟m suicidal, I‟m not an (word unclear), I‟m gonna say that I am, if I want to get the hell out of a place.

D: Uh-huh.

E: I have no plans, I have no feelings, I have no…

D: Mm-hm, mm-hm.

E: …no, um… there‟s no reason for them to believe that I‟m of danger to myself or others…

D: Mm-hm.

E: …and as long as I can persuade somebody of that nature, they‟re gonna discharge me. But they let me have all the pills and I think…

D: Was this all prescription medication that you had?

E: Yeah. They gave me all this prescription medication, and the following…

D: That you- that you had brought in?

E: That I had brought in. The following weekend I ended up taking all- a whole bunch of the medication and drinking, and I…

D: Mm-hm.

E: …don‟t know who found me, but I think I… my husband said I ended up back in the hospital, but then after that they kept me for two weeks.

D: Yeah.

E: So…

D: So in the hospital, you said that you mainly didn‟t talk to a lot of people… but was it mainly medication was the treatment?

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E: Um… I- I don‟t want to stereo- I mean, „cause that‟s- I would say that- how „bout this? Too much focus is placed on the- the medication aspect, and not enough time is spent on the cognitive issues and feelings and emotional things that bring people into the hospital.

D: Okay. Okay.

E: And there needs to be more focus on coping skills, and not only leave it up to medication…

D: Mm-hm.

E: …but ways to deal with, um… the- the emotions that you had – even if it is physical…

D: Mm-hm.

E: …some of it‟s physical, there‟s still emotional issues you need, and skills you need to cope with why you ended up there.

D: Mm-hm.

E: Um, the state hospital was terrible at talking about anything emotional or feelings. The private hospitals are a little better with the- the groups that they have you attend.

D: Okay. So what was it that led up to you um, going in for the ECT treatments? „Cause that was a few years later, right?

E: Um… uh… I don‟t remember details, but my husband says that they were frustrated and they said that none of the mec- medications that they were willing to try, I wouldn‟t take, because I would go to the library and look in the PDR, and see the side effects…

D: Mm-hm.

E: …and… uh, if weight gain was listed in the top three side effects, I would refuse to try it.

D: Okay.

E: So it- it was back to the eating issues from competing in high school and getting so thin…

D: Mm-hm. Mm-hm.

E: …um… with the anorexic, um… personality traits, I would not take medications they wanted me to.

D: Okay.

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E: And they eventually just convinced me that- that ECT would take care of all my- all my problems and I would be back to normal, and… (slight laugh) it would- everything- it would fix everything!

D: Was- was there any period where you were taking the medication consistently? Eh- uh- over those years?

E: Um… actually before the ECTs and even during the ECTs I was extremely highly medicated.

D: Okay. So even though you- I thought you said you ref- were refusing to take… it was just certain ones?

E: No, I would take just certain ones they would want me to take. If they had a side-effect of weight gain, I wouldn‟t take „em.

D: Okay. But you- whatever didn‟t have that side-effect you would take? As prescribed?

E: Yeah, I was willing to take, as prescribed.

D: Yeah. Okay, were you receiving any kind of, um, psychotherapy at the time, or throughout any of those years?

E: Yeah, I saw a counselor, um… a couple times a week.

D: Okay.

E: Uh… and… they even had me go through some cognitive training, um… basically learning different skills, coping skills, using distraction…

D: Okay.

E: …using different means to deal with emotional, and um, psychological issues.

D: Okay.

E: Um, the counseling was supportive, but when I started saying how much the ECT was damaging me as far as mentally, and my memory, um… I was kind of, uh… like they ignored it. And then I started asking for it, because I enjoyed the feelings that I had after the ECT…

D: Mm-hm.

E: …which is documented that it can cause euphoria.

D: Right. That‟s almost like another addiction kind of issue there.

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E: Yeah. And then the- the- the attention that you get when you‟re the only one laying there, and you‟ve got an anesthesiologist, and a nurse, and a doctor giving you attention…

D: Uh-huh.

E: Um, you enjoy it.

D: Mm-hm, mm-hm.

E: I have no problem saying that. I mean I- I was getting attention and enjoyed the attention.

D: Mm-hm.

E: Unfortunately, if I would have been as informed as I am now, I wouldn‟t have submitted to so many treatments.

D: Right.

E: And I really wish that they would have- somebody would have said, “Okay, you‟ve had fifteen or twenty treatments. There‟s a possibility it could damage your mem- memory. It could keep you from functioning later on in life. Uh, let‟s look at some alternative measures to try,” and that if I needed to, I could go back and use ECT again.

D: Mm-hm.

E: Because it does snap you out of a deep depression. But now that it‟s done so much damage, I can‟t even use it as a possibility (D: Right). It- it‟s like I‟m left with the pills that I hoard or going to a pawn shop and making sure I plan myself ahead enough, that I can get a gun and have three days in advance to purchase it and… do something totally obsane (possibily “obscene” or “insane”). And that‟s another reason why I hesitate to drink much is because then I‟ll lose all contact- connection with reality and do something that‟s totally irrational and, um…

D: Is it- is it drinking that usually leads up to those kinds of, uh, periods?

E: Um… usually it‟s the depression…

D: Okay.

E: …or being extremely manic, but a lot of times the manic was due to the- the um, amphetamines that they would put me on, because they thought that I was attention-deficit… diagnosed…

D: I see. Yeah, yeah that makes sense.

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E: …which led to the anxiety. But I would drink for the anxiety, and then I would drink if I was depressed, and then I get more depressed after you go through that brief mood elevation. And then I start thinking well- wh- what am- why should I go on?

D: Mm-hm.

E: What‟s- what‟s life really- is life really worth it?

D: Mm-hm.

E: So now it‟s kind of like I‟m- I‟m- I‟m afraid to use the- the Xanax, the Benzodiazepine – even for anxiety, because I know it‟s addictive, and it has similar qualities and abuse, um… possibilities as alcohol. I don‟t want to use the sleep medication because I‟m afraid it may affect- I may use it and it‟ll stop working because I‟ll develop a tolerance to it…

D: Mm.

E: …and then the worst part about it is, is I love wine. I love going to wineries and tasting different wines…

D: Mm-hm.

E: …and I like good wine. And… a good bottle of wine is seven to fifteen dollars, and I- I can‟t drink (slight laugh) more than two- two glasses – if my husband‟s gonna have some – and have any left to really get, uh… drunk.

D: Mm-hm.

E: So it‟s like, I have to do it in moderation, because I like- I don‟t like the- the- the sh- the crap, or the cheap stuff that you can buy in gallons.

D: Mm-hm.

E: And I‟ve never used hard liquor- liquor except for margeritas. Um… so it‟s- I‟m just kind of a picky, um… picky person when it comes to the- the food that I eat, and then the wine that I drink.

D: Right.

E: And… and now I‟m just not wanting to lose touch with reality.

D: Yeah. It sounds like, just in general, you‟re paying close attention to what any kind of substance is gonna do to your body, and do to your emotional state.

E: Mm-hm.

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D: Whether it be prescription medications or alcohol… or um, you know, anything.

E: Yeah, „cause I‟m afraid that I‟m gonna- I‟ll do something irrational. If I get too uh, dissociated with my- my feelings that I‟m gonna…

D: The- Right. Right.

E: …I‟m gonna do something that I don‟t want to do.

D: Yeah.

E: Um, I- I- I really don‟t want to hurt my husband, but you know, I often have thoughts that he‟s gonna be um… and then I had to ask him last week when his birthday was. We‟ve been married for five years and I can‟t remember it? I knew it was the first week of (month). I could have sworn it was the (date), and then he tells me it‟s (one day earlier).

D: Mm.

E: Do you know how that made me feel to have to- to ask- to- for him to say, “Are you sure it‟s the Xth? Are you sure it‟s the Xth” And I was like, “I thought I- I thought I had it right.” And he said, “It‟s the Nth.” And- and he didn‟t shame me for it. I mean, he wasn‟t shaming, and by no means is he ever shaming.

D: Right.

E: But that makes me feel like a total deranged idiot. And you talk about being dumb and stupid, with those problems in my past, and now… I‟m- I‟m back to being partially retarded.

D: Mm.

E: You can‟t remember your- your husband‟s birthday? And you only remember my- remember my wedding anniversary is because it‟s (a significant date during the year for other reasons). So I- it‟s uh, there‟s just a lot of shame there that pops up all the time when… he‟ll s- he‟ll bring something up, an actor that died or something he saw on the news and, um… „cause he likes comedies, and he‟s into- he‟s into some of that stuff, and…

D: Mm-hm.

E: …you know, I want to be supportive in the relationship, and- and- but I don‟t want to lie and say I- “Yeah, I know that person.”

D: Yeah. Yeah.

E: And, so I just sit there and I said- well, now a lot of times my response is “well I- the name- I‟ve heard it somewhere.”

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D: Mm-hm. Mm-hm.

E: Rather than just saying no. „Cause then I don‟t feel like I‟m directly lying.

D: Right.

E: But, I mean, you don‟t want to lie, because and then you create guilt- guilt. Um… but then on the same hand there‟s a lot of shame involved when you have to say, “I- I- I have no idea.” So it‟s- I- it‟s- it‟s definitely frustrating.

D: Yes. Yeah, to say the least it sounds that way.

E: Yeah.

D: That- all of that kind of- that shame that you‟re talking about, and… bringing up the issues that you had in the past, when- you know, with the learning disabilities.

E: Well, there‟s kind of a connection there, because it‟s like – I said to the attorney yest- yesterday… I mean, I- I had a problem because I have definite… uh, bipolar disorder, which- which is there and I have alcohol issues…

D: Mm-hm.

E: …and addiction issues, and now I have lost my memory.

D: Yeah.

E: So now it‟s compiled. Now I‟ve got more problems to deal with.

D: Right. And- and not to mention the- you know, what you brought up before, you know, the- just the trauma of- of going through that whole situation, and…

E: And the nightmares that I have nonstop about this doctor.

D: Yeah. Yes. Yeah.

E: Well, it‟s um, four o‟ clock – you need to take off.

D: I‟m gonna have to stop now.

E: Okay.

D: I guess, could we pick up there next time?

E: Uh, sure. (We make arrangements for our next conversation).

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Conversation 2:

D: So, as you know, one of the- the things I‟m interested in particular is um, uh… stigma and discrimination in uh, the mental health field, and how we can help to eliminate those- those things. Um… so one thing I…

E: Stigmatism from what sources are you particularly looking at?

D: Um, that‟s a good question. Um… I‟m thinking perhaps in society in general - just in general, the public opinion. But also particularly, um… from mental health professionals – you know, people have felt stigmatized or discriminated by mental health pro- professionals, uh, specifically. Um…

E: Oh, wow. Okay.

D: So, yeah. That in particular - but also generally. I think it‟s a society-wide problem.

E: „Cause you‟re in public, yeah.

D: But I think that um… we all need to work together to try to change, um, public opinion about, you know – n- negative um… stereotypes about uh… people diagnosed with- with mental illnesses and things like that.

E: Yeah, that‟s for sure.

D: Um, so uh, one thing I was curious about is, ways that you‟ve felt that you‟ve experienced, uh… stigma or negative stereotyping. Um… and this being either for a- um… from having a- a psychiatric label or for um… in- in just the type of treatment you‟ve received, or… any- any related reasons.

E: Um… I- I think- I personally feel that some labels are okay, „cause they‟re necessary for- to try to go about treating whatever the problem or issues are that are causing that person the difficulties.

D: Mm-hm.

E: But that‟s from more of a medical role model. I would hope that counselors and psychologists wouldn‟t lean so heavily towards the medical model, and think that it‟s all physiological, and it‟s all brain…

D: Mm-hm.

E: …because even my husband and I, um… got in it to it the other night and... I came right out and I said, “I think I‟ve explained this to you before, but there‟s a difference between psychiatry and psychology.”

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D: Mm-hm.

E: And he thinks- he keeps- I keep saying that people are telling me it‟s all in my head.

D: Mm.

E: Well it- yes in a fact it is in my head, but also in your head are your feelings, your memories, your cognitive abilities… and things of that nature, and I said those are a- what you would lean towards calling psychology. I said that‟s what a psychologist tries to help you with is your behaviors, your thinking patterns and those things…

D: Mm-hm.

E: …not necessarily the way the neurotransmitters are interacting with each other.

D: Right. Right…

E: And I can‟t seem to get that through to people. They all think it‟s some… it‟s just something that you make up, because there‟s not a definite cut between the two fields.

D: Okay, so any…

E: It‟s seems like- I feel there‟s a blend between psychiatry and psychology. And it- it‟s very frustrating. Um…

D: I think- I think you‟re right. A lot of people do confuse the two. Um, wh- what do you mean by “it‟s something that you make up,” as if- are you talking about people not taking your thoughts or your feelings seriously?

E: Yeah, um…

D: As if they‟re not valid or something like that?

E: Yeah, like it‟s just something that I‟m c- creating. Um…

D: Okay, okay.

E: Uh… um, my dad was visiting, and… I hadn‟t been sleeping much and I tried to avoid him Monday morning and I was calling attorneys for my husband. I guess his job was on the line because he had gotten a ticket. And… our attorney got messed up in a legal situation… (E explains the legal situation)… so I mean- I was trying to get my husband an attorney and it was just a mess. So I was on edge to begin with, and when I‟m like that, sometimes it‟s best just to stay away from situations that make my tongue move a little bit too quickly…

D: Right, right.

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E: …so I don‟t hurt somebody. But, I came out and told my dad that (her husband) would be home and could take him to the bus station at 1:30. And… he just lashes back and said, “There‟s too much stress around here and I‟m not staying another day, and you better have me to the airport on time, er- the bus station on time.”

D: Hm.

E: And I just came back and I said, “You know, I‟m sick and tired of what you‟ve done to me and my sister as far as separating us. You say one thing to us and then you go home and say another thing to her, and now we‟re not even on speaking terms because of games that are being played. I said, “And you- and you think everything is just made up.” I said, “Is there something about mental illness that you don‟t want to accept?” And he said, “Yes, I don‟t accept it. Everybody has mental blocks. You‟re just blaming everything on your mental illness.”

D: Mm.

E: And… I said, “Well, if you look at- take a look at your- your siblings,” and then I went through the different siblings and I said…

D: Yeah, you‟ve mentioned them.

E: …he‟s an alcoholic, she‟s an alcoholic, she‟s recovered alcoholic, he still drinks but he has a job.

D: Mm-hm.

E: The other one can‟t seem to have interpersonal relationships and dep- depends solely on his dogs, and almost killed himself the last time his fourteen year-old dog died. He spent $12,000 trying to get the dog- they did, uh, open heart surgery, and then they found out the dog had cancer, and he tried chemotherapy, and then the dog stayed alive for two more months, and then they finally put the dog to sleep. I mean, dysfunction and psychological - if I should use those terms - issues are in the family. And he just, “I don‟t want to talk about it,” and he puts his fingers in his ears.

D: Mm-hm.

E: So I mean- and then I realized I was being kind of hurtful. I‟m not- I‟m not trying to play the blame game- blame game, but what I‟m saying is, people fail to recognize that there are people with mental health issues, whether it be from life events in their past that are causing it, or whether it be a physiological reason that are causing it. And if it is a physiological reason that‟s causing it, then how is that person supposed to cope? They need skills, they- they need counseling…

D: Mm-hm.

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E: …to deal with those- the stigma that‟s put on those labels, as well as how do you deal when your moods are going up and down all the time?

D: Yeah.

E: I mean, you need coping skills. You need to, um… be supported.

D: Mm-hm.

E: Not be condemned or be put on the- put on the side because you‟re- you‟re- you‟re different, you‟re weird.

D: It sounds like you- two kind- two issues are at play here.

E: Mm-hm.

D: One of them being the just acknowledging that a person is having difficulty, or that a person is in pain, emotional pain or suffering, or…

E: Mm-hm.

D: …is having trouble. Um, just acknowledging that it‟s- that it‟s happening. And then the other issue seems to be uh… um… the… idea of blaming – like victim-blaming almost. Blaming the person for the problem. It seems like your dad is wanting to say…

E: It‟s my problem.

D: …well that- that‟s your problem. You made it up. Or you… um… you know, it‟s- it‟s something that you should be able to deal with.

E: Exactly.

D: Like, you did it to yourself. And I think, yeah I think both of those are relevant to…

E: Well, and…

D: …to stigma and- you know, in particular.

E: Well and then I… after Bible study – I think it‟s two weeks ago now… um, I don‟t know anymore which week is what right now – but- but the pastor who‟s recently graduated from seminary, he‟s- I think he‟s 26. Um… I asked him – there was an article in the paper about (name of the state she lives in) getting a low grade for mental health care.

D: Oh wow.

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E: (Explains the study and the article, which was done by a consumer organization)… So I asked him if he saw the article, and he said no, he‟s not getting the paper anymore. And I said, “Well,” I said- out of curiosity because my husband, we keep talking about what kind of training they get in seminary, and I said I don‟t think they get any. So I finally just came right out. I said, “What kind of training have you had in counseling or psychology, or…”

D: Mm-hm.

E: “…psychiatric issues.” And he said, “Well, uh… I had a class in psychology.” A class in psychology.

D: Mm-hm.

E: And… I can‟t remember the conversation verbatim, but, something to the effect- when we were- my f- people that gave me a ride there were getting ready to leave, so they were walking down to the car and we were walking outside, and I said, I don‟t know how it came to it, but he implied that- that it‟s something that people have in their heads. That they‟re- they‟re- they‟re creating the problem…

D: Okay.

E: …and society doesn‟t believe that. So I sent him an email, um… pretty open, but just saying, “I can‟t quite remember any of the details, but I think you said something like,” and I kind of said, “Is this- can you elaborate more. I- I‟m kind of confused.” And- and- and his…

D: Yeah… but something in your head could mean a lot of things.

E: Right, so I- I didn‟t want to say to myself well he said this or he exactly said that. Maybe that‟s not really what he meant.

D: Right, right.

E: Because it‟s not like we were sitting down. We were kind of both moving and having a conversation at the same time.

D: Mm-hm.

E: But he sends me a message back and says that he- he doesn‟t think that mental illness is in just somebody‟s head, but it‟s like, uh… the problem is, is somebody with um… depression, um… or someone with a- a- an ac- or a cold. Or, I don‟t know what he said- cold or something, would go to their doctor and be put on penicillin. Get an antibiotic.

D: Mm-hm.

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E: But somebody with depression, he- he- he goes I‟m not sure- I‟m not sure what they would do, but that he has enough training that he feels that he can recognize when there‟s a problem and then refer them to somebody.

D: Okay. So he‟s at least acknowledging that people do have problems…

E: Right. But…

D: …and that- that he doesn‟t have the expertise to deal with them but he can refer.

E: Right. But I- I feel- I still felt… um…. I sent him back an email that basically was- said that his reply was rather refreshing, and I appreciated his openness…

D: Mm-hm.

E: …and then in the next paragraph I went on to say that I don‟t remember any of my training that I had in college regarding the New and Old Testament, um… Biblical teachings, and etcetera, etcetera, and I said due to um… the electronic convulsive treatments that I‟ve had, my memory has been wiped- wiped almost blank. Um… and my short-term and long-term memory are extremely damaged, and… and then the last thing I said was something to the effect, it‟s time that the public and churches, or something, or churches, or I don‟t- I‟m not sure exactly what I put, but something to the effect that- that they stop um… I said that I‟m tired of hiding- hiding behind closed doors; that it‟s time that the public recognize that people with mental illness is a problem, and is just as much of a problem as a medical- medical problem.

D: Mm-hm.

E: And deserves the same- I don‟t know what I said- the same app- not approval, but I think you know what I‟m trying to- same um…

D: Just, acknowledgement.

E: …the same acknowledgement. I mean, I- I…

D: And- and the responsiveness, I guess of treatment. You know…

E: Right. And the last ten days I‟ve thought about it and I think I would rather be in a wheelchair missing a leg…

D: Mm-hm.

E: …and have my memories back and my cognitive abilities back. If I had it all to do over again.

D: Hm.

E: It- it‟s okay to be blind. It‟s okay to be missing a hand.

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D: Right, people understand that.

E: Right.

D: Yeah, that makes a lot of sense.

E: But people don‟t understand mental illness.

D: Yeah. Yeah, I- I- I agree. Wh- whether you take a medical model, psychiatric approach to it or not, I think it‟s still- what you‟re saying is true, that‟s it‟s important. You know…

E: Even if you say it‟s not a medical problem it‟s still…

D: Right. That doesn‟t mean you get to discount it.

E: ...it‟s still- it‟s still a problem. For someone with the- the thinking like (psychiatric survivor organization), who are anti-medical…

D: Mm-hm.

E: …um… they still deserve the same respect for the fact that they have – I don‟t even know if they use mental health, even, but whatever – they have- they have emotional issues. They…

D: Yeah. I think they would- they would just say that they deserve respect as human beings…

E: Right. They deserve…

D: …you know, that are- that are maybe struggling in certain areas, you know, for various reasons.

E: Right. But shouldn‟t everybody be treated that way?

D: (sighs) Yeah. Yeah, I think so.

E: But- I mean it just keeps popping in my head after I learned what Erma- Ernest Hemingway wrote before he committed suicide, and that he had been through two series of electronic shock treatments…

D: Mm- hm.

E: …and he said that I don‟t have my memory, so why should I continue?

D: Wow…

E: And… the- the- most people don‟t even realize they‟re still doing that.

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D: Still doing… what?

E: Shock treatments.

D: Oh, yeah. Yeah. I think a- yeah, I think a lot of people think it‟s a thing of the past, like lobotomies.

E: It- it went over when “One Flew Over the Cuckoo‟s Nest” was when it stopped.

D: Yeah. Yeah, not the case.

E: And my older brother said something to the effect, “Well, you don‟t have a leg to stand on because you signed a consent form for the treatment. And this psychology stuff is just a bunch of bullshit.”

D: Hm.

E: And my psychologist today, we got into it and she thinks that most of my problems is a learning disability, so I- I came right out and I said, “Well if it‟s a learning disability, then how did I get through college? If- if all my memory problems are due to a learning disability.”

D: Hm.

E: And… she- she didn‟t have any response.

D: Yeah. Just from what you told me, um, the experiences you‟re having now seem different than what- what you were saying you- you had in college.

E: Definitely, I mean I‟ve always…

D: Not just difficulty learning, but- but gaps in memory. I mean, that‟s- those are two different things to me.

E: Yeah it‟s- I mean I- I know I have difficulties learning, and…

D: Yeah, that might be its own separate thing.

E: …I have some attention problems, which I knew back in high school and college…

D: Mm-hm.

E: …staying on task. But that wasn‟t because I couldn‟t remember anything.

D: Mm-hm.

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E: I mean, why does this psychiatrist here want to put me on Lamictil, which is for, um… Alzheimer‟s and Dementia? Yet when I confronted him last Friday, if he would support me if it came down to the- the effect that my memory problems are somewhat related to electronic shock therapies, and he said- he just kind of paused, and he said, “Well I have seen it do miracles.” And I said, “But when it‟s abused?” And he said, “Well, in your situation I would have to see more information.” Yet he has come right out and said that he feels doctors that get into it do it because it‟s easy to bill, it has a code, they get paid for it, and that way they don‟t have to deal with the real problem, because the anti-depressants always take six weeks to eight weeks sometimes to kick in.

D: Mm.

E: So it‟s an immediate- they get an immediate result. So, on one hand he‟s- doesn‟t like ECT, and says negative things about it, but then when it comes down to it of putting him on the spot about his personal opinions regarding me…

D: Yeah.

E: …he doesn‟t want to- he doesn‟t want to support me.

D: It almost seems like what he believes privately and what he‟s able to- what he‟s willing to admit publicly are two different- two different things. I‟m not sure what kind of implications he‟s concerned about, but th- there does seem to be something.

E: But- but that‟s it. And… my psychologist said, well, she had- she- she had tried to get me to stop the ECTs and change doctors. So that- she‟s kind of indicating there‟s a reason why she‟s- there must be a reason…

D: That there‟s- yeah.

E: …why she‟s feeling that way.

D: Yeah.

E: Yet- but yet she said, “You kept going back.”

D: Mm-hm.

E: And I thought about it on the way home, and I thought, “Yeah I did.” And I also won races because I wanted the attention because it helped the way I felt.

D: Mm-hm.

E: She said, well- she said I was vulnerable… but I- I- I- I was not, uh… how‟d she say – incompetent to not fill the- to sign the release. I said, “So are you saying that I understood

243 everything on the rel- on the release, and all the long-term side-effects that I might have?” And she says, “I don‟t know.”

D: Yeah.

E: So… it‟s uh, frustrating. So if that‟s not a stigma, what is it? You see somebody, yet when it comes down to what their personal opinion is and what their professional opinion is- I guess that‟s- those are two different things.

D: Mm-hm. Mm-hm.

E: But as a consumer, I wasn‟t aware that I need to make sure that the counselor, or psychologist, or psychiatrist that I see stands with the way he feels.

D: Yeah.

E: Not just personally, but both- professionally, and I think that‟s important, and I…

D: Willing to go to bat for you.

E: Right. And I‟m not saying that all my problems are due to the shock treatments. I have other problems.

D: Mm-hm.

E: But I‟m saying there has been some harm done by that.

D: Mm-hm.

E: And I said to the psychologist, I said, “I don‟t care if I get five dollars from this guy.” If I can get them to change the consent form so people can understand the- what the possible side-effects are…

D: Right.

E: …and if I could get some money so I could get some training, so I could be able to work part- time, and- and use a computer and not forget things, and not leave my keys- lose my purse like I did Saturday. I mean, I‟m constantly losing things. It took my five times to come in and out of the house this morning trying to get ready to go, „cause I kept forgetting things. If I don‟t take a piece of paper to an appointment with me, and I can‟t remember what it was I wanted to talk about. Uh, it just… uh… I don‟t know.

D: Yeah. I mean, I can understand why they would think that it would be difficult to- to put a case to try to, I don‟t know, sue the doctor, or whatever. But getting them to change the consent form just from the things that you‟re talking about, um… I don‟t think- that doesn‟t sound like a

244 huge… you know, that- that there would be a- a lot of uh… resistance to that. I mean, to make things clearer to your… the people that you‟re providing the…

E: Treating.

D: … that- that you‟re treating, I think should be the goal of any doctor. You know?

E: Right. The form that I got from another hospital in (name of state), uh… (name of hospital) up in (name of city) area...

D: Yeah, you sent me that one. I think you sent me that one.

E: Did I send you that one?

D: You sent me two of them.

E: Okay, the two of them…

D: There‟s an older one, and a…

E: The older one is the one I used. The newer one is the hospital I was going to use‟s, and the one I have now is from a different hospital.

D: Okay.

E: And- and then, this one even says “long-term memory problems a possibility…”

D: Uh-huh.

E: …but it also says that the family should be involved when a person‟s signing a consent form.

D: Mm-hm.

E: And that it should be a team of people, not just the patient.

D: So that everybody knows what‟s going on.

E: So everybody knows what‟s going on.

D: Mm-hm.

E: So…

D: That sounds like a step in the right direction.

E: Yeah.

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D: Um… something I see as related to stigma…

E: Mm-hm.

D: …meaning, yeah, like the stereotyping – but um… I think is the act of discrimination, you know, of uh... people who have- are experiencing psychological problems, or have a label; have a psychiatric label.

E: Mm-hm.

D: Um… and I‟m- I‟m curious about your experience as far as discrimination. By that I mean, just being treated unfairly, or excluded, uh, being denied rights, um… or even, you know, attacked for- for having- for- you know, for having a particular issue.

E: Uh… it‟s not been too much of an issue, because nobody really knows. I‟m articulate enough that I can just push right through, and people don‟t think I have any issues.

D: Yeah. Well, that makes sense, yeah. Yeah.

E: I know, I don‟t tell most people. It‟s just recently that I‟m coming right out and saying it to people…

D: Mm-hm.

E: …‟cause I‟m- I‟m tired of it. Um… tired of hiding.

D: Yeah, it seems like that you‟ve- you‟ve experienced the stigma- or the- the stigmatizing beliefs of people, but the um… it- it hasn‟t moved too much past that?

E: Um…

D: Um, I don‟t know. Maybe now that you‟re coming out and being more vocal about it, maybe things will change. I don‟t know.

E: Now that I‟m being more vocal about it there- there definitely is… I mean, people just kind of- people don‟t want to talk about it or admit to it.

D: Okay. So people not wanting to talk about that issue.

E: Or bring it up, or…

D: Yeah, I guess even what you said before, to just acknowledge that something…

E: …it‟s hush-hush-hush.

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D: Yeah. Acknowledge that there‟s a problem.

E: Right.

D: Okay. Alright, um… the third thing I‟m interested in is um, the idea of empowerment. Of…

E: Mm-hm.

D: That the mental health system should be, um… something that empowers people to take more control in their life, to be able to make their own decisions, be more fully participating in society, um… So I‟m curious as to – and this can- you can answer this with regard to the ECT, or with regard to um… any other treatments, you know, counseling or medication or any other treatments you‟ve had. Um… in what ways have those treatments, um… led you to feel more empowered in your life? And in what ways have they led you to feel more disempowered?

E: Um…

D: And you can start anywhere- anywhere you want.

E: I think… the… going to a hospital because you know you‟re of danger to self, and then getting there and having your rights taken away – so you voluntarily go to the hospital, and then all of a sudden the door shuts behind you and you can‟t get back out. It‟s like you lose all of the freedom and your rights. „Cause now you‟re mentally incompetent…

D: Yeah.

E: …and all that takes is a doctor to say that you‟re not stable. But then I know what they want to hear and what they want to know. And… I… in the past I had been one- one to want- would know when I needed help, and be willing to ask for it.

D: Mm-hm.

E: And now I feel that I‟m losing most of my options.

D: How- how so?

E: Uh… the one doctor at the local hospital here, uh… refers people for ECT to (name of a city). The other one, a year ago said if I couldn‟t get myself more stable that they would send me to (name of a hospital), which is the state hospital. So I- I mean I can‟t go there.

D: So, sending you to inpatient?

E: Yeah.

D: Okay.

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E: So if- if I‟m honest, then… it‟s- I stand the risk of being detained…

D: Oh… it could be used against you.

E: It‟s- it‟s used against me.

D: Yeah.

E: I mean… part of the problem I‟m having with my current psychologist is what happened Saturday night, and…

D: Mm-hm.

E: …um…without going into it in details, she wanted me to call her in the morning- or answer the phone in the morning. I can‟t remember if it was call her or what. But, I ended up staying up until six in the morning, and… my cell phone… My husband put the dogs out in the morning, so some- I‟m thinking maybe (her dog’s) leg got wrapped around the cord or something, because when he called later that day I couldn‟t find my phone, and I went- heard it in the bedroom, and it was underneath her blanket. But, in the meantime, that morning at ten o‟clock my dad said, “The police are here.” I said, “What?”

D: Wow…

E: And he said, “Get your robe on. The police are here.” So I go to the door, and there‟s two sheriffs on my porch saying that they were instructed by the county crisis response team to do a welfare check. So and- and- I mean really, am I- there‟s two sheriffs there. Am I really gonna look at them and say, “Yeah, I‟ve got problems, and yeah, I‟m of danger to myself…”

D: Mm-hm.

E: “…and yeah, I‟ve got enough sleeping pills saved up, and no I‟m not gonna take capsules. Yes, I‟m gonna dump the powder into something and eat it. I will take it on an empty stomach. I‟ve got enough Oxycodone to put myself into respiratory failure. Yes, I have this, I have that, etcetera, etcetera.” Am I gonna stand there and tell somebody that, when I know all they have to do is put the handcuffs on me and haul me away? When they can‟t seem to help me anyway when they take me somewhere, and I get stuck and then I end up just lying and telling the doctors what they want to hear? “Yeah, I‟m- I‟m of no danger to myself, and yeah, I‟ll continue counseling, and yes, I‟ll take all the medication you want me to.” It‟s- it‟s a lie. So why go somewhere that you‟re gonna have to lie to get out, when you‟ve tried it before and it hasn‟t worked? (pause) Um… as far as being empowered, I‟m told, or it‟s suggested that consumers have rights…

D: Mm-hm.

E: …to some degree. But then if you become a threat, which is to yourself or society, then those rights are taken away from you. Which I can understand, if I‟m gonna harm somebody else…

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D: Mm-hm.

E: …then I should be detained, whether it‟s in jail or a mental facility, or whatever‟s appropriate. I- I- I- yes, I agree with that. But then on some terms, I‟m starting to think that if I‟m of danger to myself, that‟s a personal right – it‟s nobody else‟s.

D: Yeah, then there- there are people who believe that, but um… I mean, it‟s not- th- it‟s not in- in laws, I mean it- they- it‟s not a- it‟s not a right that‟s supported by- by law.

E: I mean, she- she said today, uh, something to the effect that… she- not- not that she would get into trouble, but that she- she didn‟t say she‟d be responsible, I‟m not sure what she said. But she was referring to herself, and also (psychiatrist’s name), the psychiatrist. If I were to harm myself, or something, how it would affect them.

D: Mm-hm.

E: And I was like, “If I‟m gonna take my life, do you think I really care how it‟s gonna harm my psychologist and my psychiatrist?” I‟m more concerned about my dogs and my husband.

D: Mm-hm. And how it would affect them.

E: Yeah.

D: Yeah, and what she‟s saying is true, but yeah, I mean, that‟s not something that- probably not the first thing on your mind if you‟re in that space, where you‟re- you‟re actively considering suicide.

E: I- I called her because I was upset with the way her response to what we talked about last Tuesday, when I asked her about ECT, and she was like, “Well… I guess in your case it has caused you some problems.” But earlier she said when I feel guilty because I‟m responsible for have causing the damage and signing the consent forms…

D: Yeah.

E: … “Oh don‟t- don‟t feel responsible. Don‟t feel guilty.” But in the same hour she says that it- it did- she can‟t say that it didn‟t- she can‟t say that it did call me- cause me problems because she hasn‟t done testing, and she didn‟t know me before.

D: Mm-hm.

E: And I thought- so I‟m trying to exist all weekend with the thought, my two main support people- professional support people are saying because they didn‟t know me before ECT, that it‟s all in my head. That what I‟m saying has no validity to it.

D: Hm…

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E: And today she- she kind of a- she came right out and said something, that it- it‟s because I have a learning disability.

D: Th- what- what‟s-

E: Kind of a- kind of alluding to, uh… my memory problems.

D: That that‟s what it was caused by?

E: Yeah.

D: Hm.

E: It‟s um, because I have a learning disability. So… (pause). And she's frustrated because I have not been telling her the truth, um… all the time.

D: The truth about… what?

E: Ab- about feelings, or…

D: Oh, okay. Okay.

E: Feeling like harming myself, or… being up front with her. But then again, if I‟m too up front with her then she‟s- professionally has to take certain measures.

D: Mm-hm.

E: So how can I be up front with her?

D: Does she know that that‟s why you haven‟t been comfortable being up front with her?

E: I didn‟t come back with that response. I- that‟s kind of what I thought on the way home.

D: Yeah. Probably be helpful for her to know that.

E: Yeah.

D: That- you know, that it‟s not that you want to lie to her, but you‟re a- afraid of the- the consequences that she might be forced into, you know, putting in place.

E: Yeah. I mean, she- she kind of a- alluding to Saturday night that she thought maybe I- if I wasn‟t willing to go to the hospital, would I go to a group home or something to those terms.

D: Mm-hm.

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E: And I looked at her today and she said that she felt that I prob- need- possibly need more supervision. And I said, “And how is that gonna help my memory?”

D: Right. So- she wa- she wasn‟t talking about it in terms of memory. In terms of just keeping you safe, you mean?

E: I think so, but on what…

D: Or depression? Or…

E: …what- what the hell‟s a- a group home gonna be? I mean well how is that gonna help anybody? I don‟t see that as any kind of a- take me away from my dogs and my husband, how that‟s gonna help me.

D: Mm…

E: Another loss in my life to try to deal with? I‟m not gonna do something like that. It‟s not um… I don‟t know, I don‟t see it as an option. I mean there comes a point in time when you have to look at is life about just existing, or is it about quality?

D: Mm-hm.

E: I mean, is it quality versus quantity? Some people like a lot of junk. I‟d rather have one piece of a- a- one New York steak once a week, than have…

D: Mm-hm.

E: … Sirloin steak, uh, four times a week. Even though it‟s three times the cost.

D: Right. Right. I mean, and- and you‟ve- you‟ve said that you‟ve had times in your life where you‟ve had a lot of junk, so to speak. That, you know, that you‟ve had a lot of things that- that have made you feel good, but weren‟t necessarily the best thing, you know…

E: Right.

D: …for you. Well, it seems like what you‟re talking about is kind of what I was- what I was wondering about, was the idea of choice.

E: Mm-hm.

D: The idea of being able to- whether it‟s the best choice for you or not, at least have a say and not feel like somebody else is gonna make the choice for you.

E: Right. So it‟s uh…

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D: And I guess the… there‟s that issue, um… which is kind of as what I see is important with empowerment, but I suppose that your psychologist and other people have also have that idea of safety and repercussions, and- and what not. And I have to be honest, I mean, even being a- a therapist myself, um…

E: Mm-hm.

D: …uh… I- I worry about, oh are- are you ya- you know, if- if something happens to you, um… is that, uh… you know- me having known about it, is something- do I have to take, you know, precautions to keep you safe as well? I‟m not your therapist, so, I mean, (slight laugh). But it seems like…

E: Well, and I know there‟s a certain responsibility on your part as well as her part, and (her psychiatrist’s) part…

D: Mm-hm. Mm-hm.

E: …so therefore I go to see them and I feel like I have to sit there and lie.

D: Yeah.

E: I mean, if she asked me today, I mean, her first question is, “Well how are you doing today?” And before I could even think, I just said, “Fine.”

D: Wow.

E: Actually, when I‟m extremely angry and distraught, and I‟ve been flying for the last six weeks…

D: Mm-hm.

E: …which I told her, which my husband knows, which I tried to express to the other doctor. I haven‟t been drinking, I did- I did- told her I did have a glass of wine with my husband Monday night. I mean, he was present; it wasn‟t like I‟m off teetotaling or going to a bar, or…

D: Mm-hm.

E: …driving and drinking, or um… and she s- she got upset and she said, “Well, why don‟t you take the Ambien if you can‟t sleep?” And I said, “Well, „cause it only works for a few hours and then I‟m back up again.” And when I do get to sleep, like last night, I wake up with those horrifying nightmares with my husband shaking me, trying to wake me up, pulling my earplugs out…

D: Yeah.

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E: …because I‟m being chased and put inside a place, and being confined. Or the other night was, the other doctor that gave the ECT was chasing me down with a bunch of dogs.

D: Yeah.

E: Um… it‟s…

D: It‟s kind of a Catch-22 on your part. I mean, having to decide how- how honest to be, because, I mean I- I certainly believe that if you can‟t be honest with your therapist, the therapy‟s not gonna help you. Um… but I guess there‟s the… you know, if- if- I- I- I- see, I don‟t even know what the… the… realistically, what she would do if you said all these things that you just said. You know, that you were feeling angry, and- I mean I- I don‟t see that as enough to hospitalize you. I mean, that‟s… you know. I mean…

E: Yeah, I think she- I think she could tell that I was pretty angry, and…

D: Yeah. Yeah, she probably had some idea.

E: … I was- I mean… it was pretty obvious. Um… and I- I- I even tried to express to the doctor on Friday without going into details, that my judgment the last couple weeks hasn‟t been good. I even sent you an email to that effect.

D: Mm-hm.

E: I mean, when you start becoming sleep deprived and you already have memory problems, you become labile. And I- I go for a couple days like I‟m… I‟ve never tried any… that stuff that people make in their kitchens… um, all the kids are doing it now… it‟s the new drug… (coughs). Um… (sighs). You put paint thinner in it; I think they have fertilizer in it…

D: Oh. I‟m not sure what it‟s called.

E: Um… crystal. Crystal.

D: Oh, crystal meth?

E: Yeah. What I‟ve heard people talk about that is the type of feelings I‟ve had for the last six weeks.

D: Oh, you mean with the impaired judgment? Like with the…

E: No, with- with the… the adrenaline, and um…

D: Okay.

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E: And… the psycholog- psychiatrist‟s response was, well… he‟ll reduce my um… Adderal by five milligrams. So I‟m t- er… by ten. I‟m taking twenty. So I‟m supposed to take a powdered pill – a capsule – and pull it apart and… take half of it.

D: Hm.

E: And that‟s all that he suggested, and I suggested before I left, what about increasing the Neurontin, which is supposed to be a mood stabilizer… and it does have some sedating effects and I was- in my own mind I was thinking, “Is it possible that that may slow down my thoughts from obsessing when I try to get to sleep, so heavily?” Even if I take a pad of paper and write everything down that I want to do the next day, or what‟s bothering me, I still start to go to sleep and I lay there and I can‟t stop thinking. And then I get back up and there‟s some nights that I- with my lack of sense of time right now that I‟m up for three and four hours, uh… either reading- trying to read this book on this doctor back in the 1700s…

D: Mm-hm.

E: …or I‟m on the computer trying to research some issue, and I keep using Google, and keep going from this one to this one to this one to this one, and narrowing it down and looking at articles, and then getting different ideas, and writing it down, and going back to that, and on and on and on, and I can‟t seem to stop „cause I‟m getting to a finish line. And there‟s this thing that I have that you have to keep going… I- it‟s… (sighs). It‟s just like when you‟re taking class in college. You don‟t stop halfway through; you finish.

D: Mm-hm.

E: There‟s one race I can remember; the race in Japan that I didn‟t finish. And I still feel bad about that.

D: Wow…

E: Um… you always finish. You touch the end of the pads in the pool, or you run across the finish line in running, or in a triathlon you finish all three segments.

D: Mm-hm.

E: Even if you don‟t place, like I did in the Iron Man. I was supposed to be in the top five, and I ended up eleventh… and they wanted me to pull out because I had urine in my blood- blood in my urine. Um… I just looked at „em and I said, “If I pass out or I fall, and I‟m unconscious you can- you can haul me in. But I‟m gonna keep going „til I cross the finish line.”

D: So that‟s a- kind of a philosophy you‟ve taken for your whole life?

E: I don‟t- „til I just said it I don‟t- never looked at it quite that way…

D: Mm-hm.

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E: …but I guess that‟s just kind of the way I am. I‟m very goal-oriented, and…

D: Yeah.

E: …and I- I- I want- I want to finish things that I- that I start, and not just give up, and… yet when it comes to dealing with being bipolar, and… coupled with being half brain dead, it‟s… some days extremely bleak…

D: Mm.

E: …‟cause I‟m- I‟m getting tired of fighting.

D: I could see that as being a positive quality, and something that could- you could draw strength from. Um, but also, um… as you- also potentially being a- a problem. I mean, sometimes you start something that wasn‟t a good idea to start. You know? Um… And I guess…

E: Yeah…

D: …that part of it is maybe balancing something, and deciding whether, you know, to draw from that energy, and- and be able to- to finish it, and, you know, and it- it‟s the right thing for you. Or you‟re able to say, “Oh, maybe this wasn‟t the right thing.”

E: Well…

D: But that‟s a hard decision to make. I mean everybody… you know.

E: This- this thing with the doctor, and this attorney and that attorney, and they keep referring me to new attorneys, and some of „em come right out and say that it‟s too difficult of a case to get involved in, and they don‟t- or they don‟t do psychology, or psychology‟s not recognized in the medical field…

D: Mm.

E: …or they have to prove what the standard of care is. What‟s the standard of care regarding ECT?

D: Sure. Yeah.

E: Um… but, you know, as I said to my husband, if I can‟t get anywhere with this doctor, I definitely want to get the consent forms changed so other people aren‟t put in the same position.

D: Right.

E: And…

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D: Which I would…

E: I- I have no-

D: …necessarily think would be not as- as- stressful a- a battle to wage, I guess.

E: Mm-hm.

D: Or maybe yeah, people would be more willing to take on that case. I don‟t know.

E: I- I… it‟s… it‟s just- I don‟t know, I guess I‟m just kind of confused with all of it. Because on one hand… I- I mean I really feel if I was that much needing that kind of treatment, that had those kind of possible side effects…

D: Mm-hm.

E: …and I did say to the doctor that I was having mental- memory problems, repeatedly. And he said, “Don‟t worry about it. It‟ll come back. Don‟t worry about it. It‟ll come back.”

D: Mm-hm.

E: “No I won‟t try unilateral ECT,” which is one side, because it supposedly has less side-effects on the brain – memory.

D: Mm-hm.

E: “It‟s not as effective. I don‟t want to do that.” Yet the attention that I get when I go for an ECT is like… taking a… a- a drug, um… or the- the endorphins that I would get after running for twelve miles.

D: Mm-hm.

E: Um… or…

D: Seems like a- a temporary high?

E: Yeah. I mean, I used to- as my husband said the other night, you know, he- he doesn‟t think my drinking‟s been a real problem in the last six to- months to a year, because he said I seem to be able to drink a glass or two and I stop.

D: Mm-hm.

E: And… I don‟t know if it‟s „cause I‟ve lost weight… or if I don‟t- I don‟t like that feeling of being out of control.

D: Yeah, you‟ve said that before.

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E: And that- that- that- that frightens me, and if I start to feel… a buzz, I... it feels good on one hand, and then when you look at the- the opposite side, you realize that you‟re losing your judgment…

D: Right. Right.

E: …which means you‟re losing yourself.

D: Yeah, I‟ve never heard that comparison made, uh… with ECT and drug use, but it seems to make sense…

E: Well…

D: …that- you know, that out of control, and that- that, you know, a- a- kind of a high.

E: You‟re- you‟re…

D: But at what consequence?

E: … I mean, you have the full attention of the doctor, there‟s an anesthesiologist…

D: Mm-hm.

E: …there‟s a nurse. Um…

D: Right - the attention aspect of it.

E: The attention aspect of it. Uh… and then, to pick up my chart to find out that I was getting shots of morphine afterwards, because of the headaches.

D: Yeah. Yeah.

E: It made it a very good experience.

D: Yeah.

E: So, I mean sure, she thinks my problems aren‟t um… necessarily bipolar, and it‟s- she nicely tried to say… she didn‟t even say psychological. I‟m not sure the terms that she used; she was trying to be tactful I think. But, what she‟s alluding to, which I know because I‟ve gotten all my progress notes from the psychiatrist here, because I wanted to see if he had said anything about memory loss...

D: Mm-hm.

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E: And… I know I have a personality disorder. I have no problems saying that or admitting to that. I‟m not sure- I mean when I was racing, the sports psychologist I saw in (name of town she lived in) said that she wanted me to read the book about a boy who couldn‟t stop washing his hands…

D: Mm-hm.

E: …‟cause she felt that I was obsessive-compulsive, but as years went on I- I never had any really obs- compulsive behaviors – except for the thinking. But I mean, we‟re all supposed to think, so how do you define what thinking- when that becomes a- a compulsion. I don‟t- I‟m not sure…

D: Right. Where do you draw the line? And…

E: Where do you draw the line? So…

D: …part of it might be how- how much your thinking is keeping you- preventing you from doing other things, or...

E: Right…

D: …you know, how much of it is not getting you anywhere?

E: Yeah. And I‟ve been- I think I- I mean I know that I- I dwell and I- I guess the nice term is you can say ruminate.

D: Mm-hm. Sure.

E: But I- I don‟t know if it‟s- what- what‟s the difference between ruminate and obsess?

D: Um…

E: Is one just nicer than the other?

D: An obsession- well- to use the- the psychiatric terms, rumination is just repetitive thoughts that you dwell on, um… and when it becomes an ob- obsession, it‟s uh… (sighs) something that you- you can‟t stop, and- and is often tied to a compulsion… meaning you need to- compulsion is behavior. You need to act out a certain thing to make the thought stop. So for example, people who um, wash their hands – they‟re gonna be thinking about washing their hands until they go and do it.

E: Wash their hands.

D: You know, and then- and then the cycle builds up again, so it‟s usually tied to a compulsion. Rumination I think is just, you know, like worrying about stuff, and that‟s you know, more indicative of anxiety perhaps, or depression than OCD.

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E: Yeah, I think… I probably…

D: So… they- they serve a different function, I guess… might be one way to put it.

E: Mm-hm.

D: Yeah.

E: I- I guess then I probably- you could say ruminate more than- than obsess, but- but if I- but the rum- ruminating, when I try to sleep becomes so intense that I have to get up and finish whatever thoughts that I have…

D: Mm-hm. Mm-hm.

E: …and sometimes I write it down and that‟s good enough, like it was the other night and I was only up for two hours. Then one night I get up, and until I can get the question answered that I thought of, I have to find the answer – whether it‟s looking in the dictionary or getting on the computer, or whatever it may be.

D: Mm-hm.

E: I want to know- I want to know before I can turn it- turn off- turn it off. And I mean I‟ve tried different- I‟ve read things on sleep and I- for the last six weeks I‟ve tried- I mean I haven‟t had any coffee, I haven‟t been not taking any naps during the day…

D: Mm-hm.

E: …I‟ve been trying to walk. I‟ve been doing all those things that- that people say you should do to not- to try to sleep. Um… even alcohol can affect your ability to sleep. I‟m not sure how, but that‟s some of the things that they- they said. Um… I even talked to the pharmacist, um… and he said to- if you can‟t sleep to just get up and to read.

D: Mm-hm.

E: But rather than reading I get on these tangents where I‟m taking a trip.

D: Probably can‟t focus on the reading.

E: Yeah, I can‟t seem to sit long enough, and then when I do get into like the book that I‟ve been trying to read now… um… the guy‟s name is Benjamin Rush. Or Ru- no, Rush Benjamin… and he was a doctor in the Confederate War. And… it‟s just a lot of politics and he‟s fighting because some of the doctors are more concerned with the money that they‟re making than providing care for the soldiers, and talking about how bad the hospitals were, and, um… I- I lose track of time and I can‟t put the book down and then it‟s 3:30 in the morning.

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D: Right. Right.

E: And then when I do get to sleep, it‟s like my brain keeps firing anyway, so… and with these - with the dreams. So… I mean, the other- the other night, yeah I slept, but I can‟t tell you how many muscle relaxants or how much stuff I took. I just remember taking it and going to sleep… until my dad banged on the door. Um… and said there‟s two sheriffs out there.

D: Mm.

E: And I wasn‟t trying to hurt myself, I just wanted to sleep. And I mean I slept for… oh, from around six in the morning „til- „til ten I guess it was. So…

D: So you got a solid four hours.

E: Yeah, but it- I mean I was out for four hours.

D: Yeah.

E: And I actually felt better that afternoon, and as far as running around and taking my dad places, and going to the store, I mean, I didn‟t- didn‟t lose my purse, I seemed focused on what I was doing and…

D: Mm. I wonder how much lack of sleep is affecting your- um… your memory and- and attention throughout the day.

E: Uh… I think it‟s- since it‟s gotten so much worse, I mean my memory‟s been a problem for the last nine months, since I quit the ECT, but recently it‟s- it seems to be affecting my- my judgment and my sleep and um... making good decisions, and…

D: Mm-hm.

E: …it causes you to be more un-attentive to tasks that you need to do.

D: Yeah. Well, that makes a lot of sense.

E: I mean, I was trying to bake my husband a birthday cake, and he‟s in (name of a city) on his way back from (name of city and state), and I get the bowl out, I have the cake mix there, I got the eggs on the counter. And then all of a sudden – and you can laugh, is- you know, in retrospect I can- trying- I‟m trying to laugh at myself, but on the same hand it was extremely irritating… because instead of putting the eggs in the bowl, I cracked them and put them in the empty cake box.

D: Oh.

E: Um… last week I gave (one of her dogs’) pill to (her other dog).

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D: Mm-hm.

E: I‟ve never done that. I mean, I know which dog needs to be on the thyroid medication, and I give my dog the wrong pill? So…

D: Hm. Well, you‟ve said the past couple of weeks have been pretty hectic. It seems like you‟re just- had a lot- a lot on your mind, it makes it even harder to focus.

E: Well, or what you said in your email…

D: Right. And the- and the sleep.

E: You said on your email something and I thought, “Well that‟s a good way to put it that sounds nice: „I‟ve had a lot on my plate.‟”

D: Yeah. Yeah.

E: Well, and- and I think that‟s what (her psychiatrist), the psychiatrist is- why he didn‟t really make any changes in my medication was because he‟s- I said that I‟m under a lot of stress…

D: Mm.

E: …which is probably if- why I'm feeling so much adrenalin.

D: Right. It‟s more just what‟s going on in your life right now.

E: But I- even with some of those stressors removed, and my husband already went to court, and the fine was reduced so he didn‟t lose his license…

D: Oh, okay. That‟s good.

E: …‟cause it‟s a commercials driver‟s license.

D: Uh-huh.

E: But I had to spend- I talked to ten different attorneys before I could find one that wasn‟t friends with this guy that‟s been written up in the paper twelve times for this money embezzlement, which is now over $30,000. And all of them- I had a list of questions so I wouldn‟t forget what I would ask them, and they would just go on and on and on about how much they can help me, and “I‟m sure- oh I can- I can help you, and (another attorney)‟s not a bad guy – the other attorney – and he- he- he didn‟t mean any harm to your husband by not telling him when they changed the court date.” My husband missed three days of work because of this other attorney never calling him to tell him that he couldn‟t be there for an appointment or that he- the court date was changed and things like that. Also we had already paid him, um… two-hundred and fifty dollars. But everybody – „cause it‟s a small town – seemed to know him

261 and was friends with him. And... I finally found an attorney. Did I ever tell you that? I think I did. The young attorney? I don‟t think I told you.

D: I‟m… not sure.

E: (tells a story about finding an attorney that seemed more genuine and less biased regarding their previous attorney – lasts approximately 5 minutes. Afterward, we decide to extend our conversation so we can finish the interview).

D: What I‟m curious as to- and some of this you‟ve brought up as you go along, so no need to repeat it if you said it already…

E: Alright.

D: …but what ways that the mental health system in general could be improved to better meet- meet your needs or- and/or the needs of peop- anyone who uses mental health services… you know- any- any kind of mental health services.

E: Well… um, to be more when you use the word mental health…

D: Mm-hm.

E: …are you speaking of psychiatrists or psychologists, counselors, or the whole ball?

D: I would say both. I think, you know, psychiatrists and psychologists have to work together so often…

E: Mm-hm.

D: …that I would say… yeah, both. Um… I mean, it‟s- and you‟ve worked with- you‟ve had contact with both… as well. I think most people do.

E: Um… right. I think some of the people that I‟ve- I interact with, (name of a mental health survivor organization)… I mean I wouldn‟t dare tell them that I take any medication, „cause they would never- I‟d never be able to… defend my response.

D: Well… I don‟t know. I think (the aforementioned mental health survivor organization) - a lot of people in (the organization) believe in… you know – having the choice… you know- believe that you should have the choice to do one…

E: I think it‟s… I think it‟s more choice, and you should have the right to refuse if that‟s what you choose.

D: Mm-hm. Mm-hm.

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E: Um… but back to your question. I- I think – at least from a personal standpoint, in… thinking about the last few years, or- from what I can remember is… the biggest problem is not involving significant others – but that‟s only been since I‟ve been married. They…

D: That- that significant others in your life have not been involved?

E: Yeah. Um, and that even would be back as far as when I was learning- getting help with my learning disability – having parents more involved. And then as I got older, um… whether it be a sister or brother…

D: Mm-hm.

E: …or now, a husband; I think that the family needs to be informed. But then again, some clients don‟t want anybody to know. But I think if a psychologist or a psychiatrist is trained enough in their field that they could sell the client on how it would benefit them…

D: Mm-hm.

E: …to understand more about their mental illness and be more open-minded about some of your behaviors from time to time. Um…

D: That the family would learn something, you mean?

E: That the family would be better able to support the- the- the client.

D: Okay. If they knew what was going on…

E: If they- they had a better picture of what was going on.

D: Okay. Yeah, I see what you‟re saying.

E: What- what- what it‟s like when you- you go without any sleep, or what it‟s like when you‟re crying all the time, um… I mean, what depression is, what bipolar is…

D: Mm-hm.

E: … more education, and (name of a mental health consumer/family organization) does some of that, but the one thing we went to with (the consumer/family organization), a “Family to family” or something like that, they try to educate the family. But my husband didn‟t like it at all because – I don‟t know how he put it but – they made him feel like he made a mistake for marrying me…

D: Oh, wow!

E: …that I was, that I was some… um… dishtowel, or- or not- he didn‟t use those words, but kind of inferring that I was dirty or something.

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D: Ugh!

E: But it made- they didn‟t say that, you know, it‟s wrong to have a mental illness, and they were trying to say that you should support people with mental illness…

D: Okay.

E: …so they said a lot of the right things, but somehow he interpreted that- that I was… bad or I was…

D: Like, defective or something?

E: Yeah, like maybe defective.

D: Mm.

E: So, I mean, in their process of educating they also kind of lean towards, you know, uh- it‟s a- it‟s a bad thing. It‟s a bad problem.

D: Okay. Like a pathologizing stance…

E: Uh-huh.

D: …like there‟s something wrong with you.

E: Yeah, and he…

D: I see what you‟re saying.

E: …and he already got that from his family before we got married, I mean they- they didn‟t want him to marry me.

D: Okay, so that particular meeting, an- a (name of the mental health consumer/family organization) meeting, you said it was? Um…

E: It was a class- a series that they do for families.

D: Okay. And that particular one didn‟t- it sounds like didn‟t reduce the stigma much.

E: It- it didn‟t, and…

D: It- it almost perpetuated what he had heard?

E: From like family and from people that- that he had been in contact with. Like people- even my family…

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D: Okay.

E: ...like…

D: Okay.

E: … “Are you sure you want to marry a nut?”

D: Wh- what do you think a better way of presenting that would be- would have been, to- to your husband? You know…

E: Um… um… letting him know that- that even somebody with a mental illness can be likeable, and have a good character. And… they‟re not necessarily lacking intelligence.

D: Okay.

E: Um… it‟s- it‟s like a car that occasionally needs a tune-up…

D: Okay.

E: …or needs to have its oil changed regularly.

D: Mm-hm.

E: Putting it to him in a way that um… he didn‟t make a poor choice…

D: Okay.

E: …but, as far as how it would help other people, I guess… I think it might have just been that particular class, and how they presented it. It‟s possible other (mental health consumer/family organization) programs like that would have come off to him differently. So…

D: Yeah. It- it could have. Yeah.

E: …I think it‟s more- „cause I‟ve looked at the old book that we had. It‟s a big thing with all kinds of handouts. And I- I‟ve looked through it quite a few times at night, and I can‟t really come up with how he would feel that way, „cause the information is not bad.

D: Mm.

E: So- and he usually is pretty perceptive about information. But somewhere- I don‟t know. Maybe it was someone he talked to when he was there, or- I‟m not sure.

D: Yeah, it could‟ve been one person‟s take on it, or just maybe his pre- preconceptions about it. You know, those are hard to shake.

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E: It- I think it was- it was difficult for him. And… so rather than doing it through (the mental health consumer/family organization), because that‟s- that‟s a- like an organization…

D: Yeah.

E: …to go back to how it would help without going to outside a- you know, somebody like (a mental health consumer/family organization)…

D: Mm.

E: …is to for the counselor and psychologist and- and case worker- case manager, for them to work- first of all, for them to work as a team, and have more of a team approach…

D: Mm-hm.

E: …and realize that mental illness is a facet of many different issues. And who in that group is best- has the best abilities to… I don‟t want to say “attack,” but um… and I don‟t want to say “fix,” uh… not “deal with,” but… who‟s m- the- the psychiatrist shouldn‟t be trying to change cognitive, uh… I don‟t want to say cognitive def- deficits, but… He shouldn‟t really be too concerned with the feelings and those kind of things… as much as he should look at how it‟s affecting that person overall. Well, that doesn‟t make any sense. I guess I‟m trying to say, they‟re more for the- the way the brain‟s firing; the synapses, or the chemicals in the brain…

D: Okay.

E: …is his expertise. Let the psychologist do her area, which is more feelings, cognitive, uh… that kind of, you know, area. And the case worker can help both of them help the patient through the months ahead in dealing with some of the things that they- they bring up. Kind of like a- a game plan.

D: Mm. And you feel like that‟s not happening now?

E: Um, no. I- I- I… I mean I was driving somewhere else to get ECT, and then I was seeing a different counselor and… a different doctor. And… the doctor I was seeing didn‟t know what the other doctor would prescribe.

D: Okay. So not everybody‟s on the same page?

E: The doctor who gave the ECTs didn‟t know what the other doctor had prescribed...

D: I see. Okay.

E: Um… and like that counselor – which I should bring up to my psychologist – she- when I would bring up to her about my memory problems, she would tell me, “Well don‟t worry about it. He‟s- it‟s helping you. It‟s helping you.”

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D: Mm-hm.

E: So- I mean, who am I supposed to trust? I came right out and told my psychologist today; I said- sh- she made a comment that I‟m not trusting people- or that I‟m not trusting her because I‟m not giving her the full truth. Yet in that situation, when I was upfront and honest nobody made- or took any action on what I was saying.

D: Mm…

E: Or did they even consider bringing in my husband to say, “Do you think this is having a negative effect on her memory?” I mean, if they didn‟t believe me then why didn‟t they ask him?

D: Mm-hm. Mm-hm.

E: Um…

D: So… they‟re saying y- you don‟t trust them, but it sounds like you were feeling that they weren‟t trusting you, at least for a time there.

E: Yeah, I don‟t think I was trusted and I um… I was on so much medication that I think that my judgment was not good, to keep…

D: Mm...

E: …going back for ECTs.

D: Yeah. Yeah…

E: And then the support system I had says, “Well, it‟s helping you. It‟s helping you.” And the doctor doing it wants you to keep coming back. Um… And yes, I am a consumer, as (her psychologist) said, and I have a right to refuse.

D: Mm-hm.

E: But does she realize everybody that I consulted in was telling me, “Oh, it‟s doing you good. It‟s doing you good.”

D: Right. Right – why would you go against all that?

E: Right.

D: …at the time- yeah.

E: Um… back to what I originally said. I think to have family members involved…

D: Yeah.

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E: …and if you‟re not married, then maybe uh- if you‟re living in a- um… a group home, then the people that- not the people that run the place – some of the- the- the actual people that are involved in daily activities…

D: Mm-hm.

E: …l- let- let the patient or the client pick out who they want to come in and hear what the game plan is.

D: Do you feel that would help kind of create a support system, or to help inform the support system that the person already has?

E: Um… I think it would- to start with, it would create a more substantial support – a better bridge. Um… but overall it would probably allow the person to become more functional because you‟d have that many more minds working together…

D: Mm-hm.

E: …if they had more of a team approach rather than segregating – you see the counselor here, you see the doctor here...

D: Mm-hm.

E: I mean, I said to her today, she doesn‟t want me to- she knows what I said to her Saturday about the doctor I‟ve been working for. He‟ll give me a prescription for anything that I want…

D: Yeah.

E: …and… I just got on a new plan with the state that- through the Federal government that‟ll give me medical care, um… to supplement my Medicare if I work at least one hour a month. Well, I typed up- had my husband type up what I wrote and shoved it in front of his face- of this doctor, and he signed it. And… I‟ve been there for about four hours once a week since the beginning of the month, and… I‟m realizing now from seeing things that he‟s in a- a very vulnerable state financially. He‟s not billing, he‟s not keeping records, he‟s not- he‟s- has a personal account, not a business account. Um… the lady doing the billing was telling me what was going on and then I saw papers from- tax from the IRS, and… um… he had me sign a form last week saying that I was volunteering, yet the letter that I gave him says that he realizes that I need to work one- a minimum of one hour a month in order to be eligible for this Federal program.

D: Mm.

E: So, I mean sh- sh- she said to me today, “Well, you knew that that wasn‟t- that he‟s not a- a person that you should be associating with,” is kind of what she implied.

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D: Wow.

E: Yet, you know who referred me to this medical doctor?

D: Who?

E: The hospital here in town.

D: Ah…

E: Because there was no psychiatrist that would see me because I don‟t have Medicaid, which is, I guess the state medical stuff, because I‟m on Medicare.

D: Mm-hm.

E: And Medicare doctors, psychol- psychiatrists m- more- most of „em don‟t accept Medicare. There‟s not another one in town, except for the place that I‟m at now, because (her psychologist) convinced this doctor… and that hospital to let me see one of their doctors. „Cause she didn‟t want me to go see this guy that was giving me the shock treatments. So- but they referred me last year after I left the hospital to this medical doctor who‟s friends with the psychologist- psychiatrist in town, who subs- gives people prescriptions for different medications and I‟ve learned to- in the last year to realize that a lot of his experience was because his ex-wife was bipolar.

D: Hm.

E: And he seems to know a lot about pharmaceuticals – well he should if he‟s a doctor I guess…

D: Mm-hm.

E: …but he doesn‟t specialize. He‟s a general practitioner – he doesn‟t specialize in psychiatry.

D: Right.

E: And- and they referred me, so I said to her, “Well, th- they‟re the ones that referred me to her- to him.” And she said, “Well I- I don‟t know what they do over there.” So… I mean, right there‟s telling you that the team approach wasn‟t being in place when I‟m- when I moved here.

D: Mm-hm. Yeah, it doesn‟t sound like everybody was on the same page.

E: But… and I‟m not saying that the family- or significant other needs to be there when they have this team meeting. They can do that behind closed doors if they want to. But at least with the psychologist, uh… once a month or once every two months, or whatever‟s determined by the psychologist that feels- is necessary. Bring in the significant other to offer suggestions and… possible uh… solutions to some of the problems that they may be having, to see if they have any

269 feelings themselves about what‟s occurring with their significant other‟s care. You know, to get a different perspective rather than just the- the client‟s.

D: Mm-hm… get some input.

E: Get some input – from somebody that lives with them.

D: Mm-hm. (pause). Okay. Is there anything that you haven‟t mentioned already that you think, um… mental health professionals can do to facilitate empowerment, um… amongst people that- that are receiving services - in particular, empowerment?

E: Um… Rather than the way I felt the last four and a half years – that I was just a recipient, and… had to do whatever anybody told me to do…

D: Mm-hm.

E: …and… and then- and then doing that; I‟m now paying for it with my memory loss – have- express to me that I have rights, just as a patient does going to an eye doctor…

D: Okay.

E: …to see a different doctor, to see a different counselor, to see a different case manager if for some reason there‟s per- personality c- conflicts, or… if I just want a different opinion. I mean, in the mental health system, unlike the medical types system where you‟re told to get different opinions, once you get into a – a clique or system…

D: Uh-huh.

E: …you‟re at their mercy. And I- I felt like I had no… no rights in what I was being told, and… if I did refuse to take medication because of a- the side effects… um… which is optimately (ultimately? optimally?) why they wanted me to do the ECT, because they said I wasn‟t compliant with my medication. But I would express to them the side effects that I was having and then they wouldn‟t do anything and so then I wouldn‟t take it. And… I just didn‟t feel like I had- didn‟t have any rights, so I think it‟s important to- to some degree, depending on the person‟s functioning to let- to let them know that they do have rights.

D: Okay, so better- better informing people… about- about rights.

E: Yeah, I mean that they…

D: They- Yeah. Yeah.

E: …I mean, that they deserve accommodations just like somebody with a- a learning disability.

D: Mm-hm.

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E: Um… that they should be respected and that they should be heard. Uh… I- I- when you say empowerment, are you talking about like, letting them- a person be more independent, or when you say empowerment what are you referring to?

D: That- yeah, that could be part of it.

E: Just empowerment, or just…

D: Um…

E: …like a- like a say in treatment, or…

D: Um, both. I‟m- Yeah. Yeah, I think both of those would- would constitute empowerment. Um, m- I‟m thinking even broadly, you know, just having a say in- in their life. Being able to make choices in- in their life, and participate in- in- in life. But yeah, treatment I think would- would be included.

E: Yeah, I think just in life in general, because it‟s like… I can‟t… try to get a job and tell them that I- I can‟t handle too much of a stressful situation because I‟m bipolar. Because if I say that, they‟re not gonna hire me.

D: Mm-hm.

E: And as- uh- as I understand it, at least (a vocational rehabilitation organization) even came right out and told me not to let anybody know that I had a mental problem.

D: Mm…

E: Because if they find out, they won‟t hire me.

D: Mm-hm.

E: And… then if I get hired and then I tell them, then they‟re not- they don‟t have to provide me with any accommodations. So…

D: Right. That kind of goes back to the stigma and discrimination piece.

E: Right, so isn‟t that- isn‟t that discrimination?

D: Abs- I would think so, yeah.

E: On one hand you‟re saying, “Don‟t tell them,” but then on the other hand, if you need an accommodation and you don‟t tell them, then you can‟t- you won‟t receive it.

D: Right. Yeah, it‟s kind of a Catch-22 I guess.

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E: Because you didn‟t inform them properly before employment.

D: Yeah. Do you feel like there‟s something that mental health professionals can do to help in that area? Um, to- to reduce that kind of uh, confusion, and that- that- that sort of situation?

E: Um… well, work more closely with um… state agencies like (the vocational rehabilitation organization she mentioned earlier), and…

D: Okay.

E: …other services that help people with – whether it‟s a- a mental- mental illness or a physical disability.

D: Mm-hm.

E: Um… uh, I'm not sure what I was…

D: You‟re saying work with vocational agencies…

E: Yeah, I‟m- I‟m thinking as- as a start, um, work with them to take off the stigmatism…

D: Mm-hm.

E: …because there‟s an agency that‟s supposed to help somebody with a disability, yet they don‟t recognize mental illness as a disability.

D: Yeah.

E: But if I walked in there with a prosthesis, or however you say it…

D: Mm-hm.

E: …from my bottom- from my knee down… there‟s- there‟s no problem.

D: They would- they would better know how to deal with that, and how to…

E: Mm-hm.

D: …how to give accommodations. They…

E: Well, it‟s like in college. I mean, they- they tested me and realized that I was dyslexic, and…

D: Mm-hm.

E: …that I would do better if they put my books on tape.

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D: Right. They knew what accommodation would help.

E: Right. And if that didn‟t work, then they would try something else.

D: Mm-hm.

E: And… by the time I was in college, they… even gave me my tests orally.

D: Mm-hm.

E: And- and I- I got- it took me six years, but I finally graduated.

D: Mm-hm.

E: So…

D: So that sort of thing… for work- you know, for employment options as well.

E: Yeah. I think- I think the mental agenc- the mental health agencies need to… I- I mean their first goal is to help the client, or the patient, or however you put it…

D: Mm-hm.

E: …but, rather than spending all the dollars on just that, what about informing the general public more about how much mental illness is amongst all the people. I mean, there was an article in the paper, um… I think I‟ve got it sitting right here – let me read you the headline, „cause I saved it, um… It was, um… let‟s see… “Many ex-presidents have faced mental illness.”

D: Mm-hm.

E: And the lady that wrote it is the president of, er… and the CEO of the National Mental Health Association. I‟m not sure what that is, but she‟s in Virginia – Alexander, Virginia.

D: Yeah.

E: But… the article goes through and said that, um… it says here, “They found that 18 of the 37 presidents experienced periods of chronic mental illness… that ranged in severity from Howard Taft‟s sleep apnea to Woodrow Wilson‟s anxiety to Richard Nixon‟s alcohol abuse, Telly Roosevelt‟s bipolar disorder

D: Wow. I didn‟t realize that.

E: Yeah, and then it goes on to (unclear) and what some of the signs of those are…

D: Uh-huh.

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E: Um… and then it- the last thing it says, “Lincoln- as Lincoln himself once wrote…” and then it‟s in parentheses, “…that some achieve great success, comma, is proof to- that all others can achieve it as well.”

D: Mm-hm.

E: And… I think they‟re alluding to that he realized that he had problems.

D: Yeah, I‟ve heard of Lincoln, um… I think de- with depression…

E: Mm-hm.

D: …was his problem. Yeah. But I- I didn‟t know that the prevalence was that high. So that- that kind of… are you um, kind of pointing to that as an example of, of uh… like an educational, um… method that can be used to point out that this is something that, you know, a lot of people deal with, and, you know, shouldn‟t be ostracized? Is that- do you feel like that article accomplished that- that sort of goal, or… goes in the right direction?

E: Um… y- I mean, uh- yeah. I think it‟s- I don‟t think it- one article would accomplish that goal. I think…

D: Sure.

E: …it‟s something that needs to start and continue from now on.

D: Yeah, like a- a campaign to do that widespread.

E: Right. To just, continue to take off the stigmatism that is on mental health and mental illnesses, and… so many insurance companies won‟t accept Medicare, but if I was on the state health plan then I could um… see counselors and psychiatrists and wouldn‟t have such difficulty in finding help.

D: Mm-hm.

E: So it‟s- it comes down to the- whether you don‟t have any money or whether you have too much money, and then my husband‟s insurance company doesn‟t cover counseling.

D: Yeah. Funding is- is always a problem.

E: Yeah, I mean, the insurance companies don‟t recognize mental illness as a problem in our society.

D: Yeah.

E: So if they‟re not gonna help, then how are people- people can‟t pay for it themselves.

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D: Yeah.

E: So how do they- how do they get the help?

D: Yeah, I think that‟s a widespread problem. A lot of people don‟t get help, or get limited help. Um…

E: Well- I think, yeah there‟s limited help, but then, um… (consumer/family organization) in Washington has been focusing on how many of the people in the jails… I don‟t know what percent they said, but a large percent, and I‟m- uh, I would think if it‟s this bad in Washington, it‟s probably, just- I shouldn‟t be generalizing, but um, it‟s- I won‟t say it‟s a problem, but it‟s an issue probably around the United States…

D: Mm-hm.

E: …that too many mental illnesses get either undiagnosed or not followed- followed up on, or taken care of, or treated, and then they get into drugs and alcohol or other crimes…

D: Mm-hm.

E: …and get thrown into jail.

D: Yeah. I think that is pretty common.

E: And they‟re- and they may not be- it may not be a necessarily schizophrenic or… a major mental illness, or it could even just be a personality disorder which could have been from being molested or abused or not having a parent. Or- you know, what ever the reason is… even a personality disorder should be given the same recognition as an Axis I disorder.

D: Mm-hm.

E: But, if you- if you‟re not totally insane, then… you‟re locked up. So it‟s- I mean what causes somebody to become antisocial? Isn‟t that what they say you are when you break the law?

D: Um, well there‟s a little bit more to it than that. Yeah, but that‟s- that‟s part of it, a criminal background, and, you know- having, uh… you know, taking pleasure in that, or having lack of remorse. That sort of thing.

E: Mm-hm. Yeah, I think I‟ve heard that lack of remorse.

D: Yeah.

E: But what causes a person to end up with those kind of personality traits?

D: Oh, well that‟s something that gets debated, I mean, nobody knows for sure. But um… I think there‟s…

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E: Do you think that some of it may be life experiences as well as devel- during the developmental years?

D: I- I would- yeah, that‟s an approach that I agree with, yeah.

E: Mm-hm.

D: Some people… other people might play up more of a genetics, temperament kind of ar- argument, um… which may be part of it as well. Yeah, I think life experience is a huge part of it.

E: It‟s probably a- a lot of, um- like you said, you- I mean, I- I don‟t like to say it‟s all because of this or that, like…

D: Yeah – a combination.

E: …like you- you were trying to imply, it‟s a- it‟s- it‟s- a generalized area. Possibly genetics as well as life experiences, and…

D: Mm-hm.

E: …but I think people underestimate the importance of early development…

D: Yeah. Yeah, I would agree.

E: …and what- and the effect that that plays on your behaviors as you get older.

D: Mm-hm.

E: Because if those- those skills that you adapt to survive in your childhood work, and- and you‟re frightened to the point that that‟s the only thing you know to depend on…

D: Yeah.

E: …why aren‟t- why aren‟t you gonna continue those same personality tactics to approach other things in life?

D: Yeah, absolutely. Yup.

E: I mean… and like you said earlier, maybe, I mean that‟s part of my- my- my issue is that I go nonstop trying to- I get obsessed with something and I wanna- I wanna finish it because I- you know, being held back in second grade…

D: Mm-hm.

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E: …and being labeled stupid, um… had a great impact on me, where athletics I got recognition and- and the kind of things I think most people want.

D: Yeah.

E: Feel like- feel like you‟re- you‟re making something out of your life. So…

D: Right. Right. And I guess the problem arises when you do whatever it is you do, you know, and to the extreme, and- and it- even if it doesn‟t- even if it‟s not working for you, you do- you keep doing it. You know…

E: Even what somebody tells you that it‟s- it‟s causing you a problem, it, I mean, you can‟t just change…

D: Right. Right. Or even what you- even if you know it‟s causing you a problem, you know? Some people know that they‟re doing things that are bad for them, and won‟t- don‟t change. Yeah.

E: Yeah, I mean… um… just a quick one for you, but…

D: Sure.

E: …there‟s a friend that I had in (a town she lived in), before I moved here a year and a half ago, um… I don‟t know if I met her at mental health there in town or really how we became acquainted, but she‟s kept in contact, and… she‟s a recovered alcoholic, so I knew her from going to some AA- AA type functions, as well as I got to know her where she lived and that kind of stuff. But she knew I was having the ECTs and that they gave me pain pills, and she would tell me if I don‟t use them up, to give them to her.

D: Oh, wow.

E: And so I started doing that.

D: Yeah.

E: Well… as I told my husband, that‟s gone on for four and a half years, so when I was in (another town) last week, she wanted me to give her some pain pills that I had…

D: Mm-hm.

E: …‟cause I have them for my back, and… she wanted to give me some of the pills that she‟s buying from some other lady, and…

D: Huh.

E: … I told her I- you know- I don‟t want to take some- I think it was Methadone or something.

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D: Oh, wow.

E: And she‟s telling me how euphoric I‟ll feel and all this kind of stuff…

D: Right.

E: …and I‟m like, it doesn‟t sound like somebody with an addictive behavior should try something like that.

D: Probably not, I mean, that‟s- that‟s Heroin, basically.

E: Yeah, so I- I said well, just give me some of the meat that you have, because they just butchered a couple of cows.

D: Uh-huh.

E: So now my husband realizes that the meat that our freezer‟s stuffed full with is from her, because I gave her pain pills, and I told (her psychologist). So (her psychologist) tells me that I need to cut off that friendship, and my husband says don‟t accept- don‟t take anymore meat from her for pills, and don‟t give her any pills, and- and- and- and I know it‟s wrong.

D: Mm-hm.

E: I knew- I‟ve known it‟s wrong the whole time.

D: Right.

E: But she‟s- she‟s been a friend…

D: Mm-hm.

E: …and so now one of my support- you know- a- a friend is- I‟m told, well – cut her off.

D: Yeah. That‟s…

E: So I guess…

D: …difficult to do.

E: …uh, I‟ve learned that you can‟t buy friendship, because that‟s exactly what‟s been happening there.

D: Yeah. I mean I- I guess if she was a true friend she would be able to understand that, you know, that you couldn‟t do that anymore, and you wouldn‟t have to cut her off, but I‟m not sure if she would understand that or not.

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E: Well- and then she- in some of her letters that she sent me, she asked me if I was- if I had found any AA meetings. And… I- it- it just made me really angry, and I thought, you‟re asking me if I‟m finding AA meetings…

D: Yeah.

E: …and I haven‟t been drinking much for the last six months. Yet, you‟re abusing pills?

D: Yeah. Yeah.

E: So I- I don‟t know.

D: Like, hypocritical I guess.

E: Yeah, it‟s kind of- it‟s- it‟s- it‟s confusing.

D: Yeah (sighs).

E: (Elsie asks some questions about the study, e.g. how many interviews I have left)

D: (I explain a little more about my plan and rationale for this study, respecting multiple views and forms of treatment)

E: It- it just comes down to what works and makes you productive and can live a meaningful life.

D: Absolutely. I couldn‟t agree with you more on that – yeah.

E: And- and I‟m finding that it‟s- it‟s- th- the key there, for me anyway, is becoming- which I‟m having a very difficult time with in all facets of my life, and that‟s moderation.

D: Yeah. Yeah.

E: I don‟t seem to know what moderation is. Um…

D: Uh-huh. Running, like you said, full- full-force – not wanting to- to quit.

E: Right. And… some people, I suppose that have overweight problems. I mean, there is a situation where they- they eat too much

D: Mm-hm. Yeah, I guess that‟s a problem with moderation as well.

E: And… just a- just a- a balance. I mean even- not- I mean, you don‟t necessarily need to go to the extreme of saying that medication and mental health and… uh… the guy from (a mental health survivor organization), I said- I said something to him and he got really upset with me, um… because I used a- I‟m not sure what word it was, but something um, mental health or

279 diagnosis or something, and he didn‟t like what I said. He- he said, “You don‟t say that.” And I thought, “Well,” I‟m- you know- I‟m- I thought to myself, “I‟m sorry if I offended him, but I- that- that was not my intention to offend anybody.”

D: Mm-hm.

E: But we should all be allowed to have our- our personal views which come from our previous expen- experiences.

D: Right. He can tell you why he doesn‟t use that word and why he doesn‟t believe in it, and you can tell him why you do, and why it works for you, and… that‟s- that‟s a dialogue right there. Yeah.

E: Right… well, I mean- I think the mental health professional needs to t- tame down, or- what‟s the word? Is that the right word – tame down?

D: Tame- tone down maybe?

E: Yes, tone down. Because they‟re so over… over the- the law, um… in the people that they do care for and they have so many restraints, whether it‟s being restrained in the hospital or being res- being told that you have to do this or they‟re not gonna help you…

D: Mm-hm. Mm-hm.

E: You know, there‟s- I would like to see them have a little bit more of an open view. And then if they had more of an open view about how they approach mental health in general, then maybe society in general could pick up that approach – as it not being such a- a critical, terrible thing.

D: Mm… that makes a lot of sense.

E: Because they‟re just like… they over- they kind of overdo it a little bit much. Where – and don‟t repeat me, but – (mental health survivor organization) on the other hand has been harmed or burnt by mental health like I have and they‟ve gone the total opposite direction.

D: Mm-hm.

E: But… I- what I‟d like to see is people to recognize that yeah, there can be some… whatever you say, mental health or- or- psychological or whatever, issues in anybody‟s life…

D: Mm-hm. Right.

E: …that they need help. Whether it‟s taking Vitamin C or Melatonin or eating blueberries at two in the morning, or whatever it may be for that person, y- you do what works.

D: Yeah.

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E: So… I mean I don‟t even- at this point don‟t even think that the medication even- when I look back over the last few years I don‟t really see that any of it has been that beneficial as far as being bipolar. I still seem to cycle whether I take 20 pills or whether I take like I‟m taking now…

D: Mm-hm.

E: …four… four pills.

D: Have you told your psychiatrist that?

E: No… I haven‟t. I probably should tell him that I don‟t really see much… because there‟s so much change from time to- when you see him, from month to month or every three months or whatever it might be, that they attribute whether you‟ve gotten better or you‟ve gotten worse to the- the small change that they‟ve made in your medication. And-

D: Ah, I see. Well, it sounds like you‟re talking about long-term, like over the years…

E: Well, yeah. Like, the ECT. Yeah, it‟s beneficial. It probably was beneficial to me with some of the depression that I experienced. It did get me out of it, but then… is it something that you can continue to do for- for twenty or thirty years?

D: Right.

E: Don‟t you need to start looking at some alternative ways of dealing with the depression or better coping skills, or-

D: Mm-hm.

E: Um… … you don‟t just give a pill and say, “this is gonna fix your problem.”

D: Mm-hm.

E: “I‟ll see- I‟ll see you in a month.”

D: Well, I guess you do if you believe that the problem is caused by a brain malfunction in the first place, which I don‟t believe.

E: Right.

D: Um… but if you do believe that, I guess you could see that as a- sol- you know, as a way to solve the problem. But I- yeah, I‟m agree- in agreement with you that the- it‟s not- that‟s not the- the cause, or the main cause.

E: Well, I said to (her psychologist) today, I said, and… it was an article that I picked up at that doctor that I‟ve, whatever at. I don‟t know if I‟m working there or volunteering anymore, but for the time being I have to say I‟m working there in order to keep my health care.

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D: Mm.

E: But… he had an article on Alzheimer‟s and it was talking about all these new drugs that supposedly gonna decrease the- the onset of Alzheimer‟s; keep it from getting worse. Well, the medication that the psychiatrist wants me to take is for that, but in this article it said that the first thing that a doctor should do is do a certain amount of tests.

D: Mm-hm.

E: And… to… like a- a neuropsychology, or something- cognitive, you know-

D: Yeah. Yeah, a neur- a neuropsych uh… evaluation. Yup.

E: Yeah. And I said to (her psychologist), “he didn‟t do that.” I said- and she said, “Well, he doesn‟t have that kind of time,” and- and she‟s- she‟s kind of…

D: Yeah.

E: …what do you call it? Um… standing up for him.

D: Yeah.

E: And she said, “You‟ll have to ask him that.” And… I said, “So, I thought when you- when you- take a certain approach, whether it be psychological or physiological, that you need a baseline…”

D: Mm-hm.

E: “…otherwise how do you know if what you‟re doing is helping?”

D: Yeah. Yeah.

E: And… she just kind of… w- and I said and… “You‟ve- you‟ve been helpful, but have you pursued exactly the problems that I‟m having with my memory? I mean, have you suggested testing?” Which I didn‟t want to say to her, you know, “you haven‟t done it…”

D: Mm.

E: “…or you didn‟t have somebody do it.” And she‟s like, “well I‟ll have you get tested, but you‟ll probably have to pay out of your pocket.” So… um…

D: Right. It‟s definitely your right, if you want to get tested…

E: Right.

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D: …for whatever, to- to get that testing, yeah.

E: Well, and then she said, “w- w- what- what do you want that for?” And I said, “so I can have some concrete… uh… not documents, but evidence, or- so I know how I can try to get some help, or… what I need to try to go on… to- to- to function. Um… how- how to work with a memory problem.” D- does that make sense? Kind of a…

D: Yeah, something that would- would influence what you do, to help you figure out where to go…

E: Right, „cause it‟s…

D: …how to- how to work with it.

E: …‟cause at this point, I think-

D: Which is- the test might offer, I don‟t know. It‟ll offer some information. Yeah, I don‟t know what.

E: Ev- I mean, everybody just thinks it‟s- it‟s in my head, and I‟m- I‟m making it all up. And that‟s… and then she says, “well it‟s not all in your head, I- you know- I do believe that- you know, your memory problems are a difficulty for you, but...” And then she tried to push it over to a- you know, a learning disability and then I- well how did I make it through 6 years of college if it was all because of a learning disability?

D: Mm-hm.

E: So, she gave me the name of a neuropsychologist or whatever, to try to get testing, but they don‟t accept Medicare. And… I called another place, and it looks like there‟s probably nobody in town, and this one person she referred me to wants $1500.

D: Wow…

E: So it‟s- you know, there‟s another area where you can improve…

D: H- have you looked into any, um… training facilities? Training clinics? That kind of thing…

E: Um…

D: …that are- are counseling or clinical psych programs.

E: You mean like, would be offered like at a university? Or…

D: Yeah. That you‟d be getting um… tested by trainees, by, you know- psych students at a- at a- a reduced price.

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E: Um… no, I haven‟t, but that…

D: It might be an option. (D explains a bit about this particular option and the level of training that a graduate student trainee might have).

E: That‟s one way to at least, um, be able to get it done. Even if I had to drive… (E describes several different universities in driving distance and briefly describes her difficulties with getting lost while driving). Well, I‟ve taken enough of your time.

D: Yeah, well thank you.

E: Yeah.

D: Thank you for being willing to talk, um…several times. Um… (D describes the process of transcribing and analyzing interviews, as well as her role in the analysis process).

Some small talk over the next ten minutes… Elsie describes an article on ECT that she recently read. She also asks a question about ADHD, explaining that the doctor that treated her with ECT also had her on “60 mg. of Adderall” for ADHD. She describes how her symptoms were situation specific and we briefly talk about the over-diagnosis of psychological disorders, which leads to a discussion about the use of DSM diagnosis:

E: I mean, that‟s what that DSM- I- I‟m sounding terrible, but… it may have its purpose in some areas, but I think it‟s- it‟s overused.

D: I think it has its purpose, but my opinion is that it serves more of a purpose for uh… doctors, or for psychiatrists and psychologists, perhaps, than it does for clients. You know, I mean, you‟re- you‟re able to put a- put a name to something. That‟s a- you know, and often times that name can be more harmful than- than good. So, I think it helps you know, professionals, but I don‟t know how much it helps clients. I- I would say that if- if anything it does more harm than good.

E: Well, it‟s- it‟s a stigmatism.

D: Yeah. That‟s- that‟s the- one of the reasons, yeah.

E: I mean, I- that‟s the way, I mean, I feel.

D: Yup.

E: I‟m not accepted by people at my church. I‟m not accepted by the- the pastors, because I sent them a- an email that tell- told them to basically…

D: Mm-hm.

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E: …accept that there‟s- there are people with mental illness in your congregation. They‟re your neighbors, they‟re your…

D: Mm-hm.

E: …your- they‟re- they‟re- they very much likely might be family members. But, like my dad, people won‟t accept that people can have emotional problems…

D: Yeah.

E: …more so than others. And maybe, even if other people have them, some people might not have the coping skills to deal with them as well as others.

D: Mm-hm.

E: Or things in their environment have contributed to their lack of coping with certain emotions in the wrong way…

D: And like- and like you mentioned before about the jobs, about getting a job, you admit to an employer that you‟ve been diagnosed with something, then you know, is that gonna give you uh… benefits, is that gonna give you a combination, or is that gonna get you not hired?

E: Well the- the lady at (a counseling organization) came around and told me that if I said I had a disability of any kind…

D: Uh-huh.

E: …that they wouldn‟t hire me.

D: (sighs) Yeah. Yeah.

E: And that- and she‟s a counselor.

D: Mm-hm.

E: And she‟s saying, don‟t let anybody know that you have a mental dis- disorder or whatever.

D: Yeah. Keep it hush-hush.

E: Or that you see- or that you see a- a psychologist. Or a counselor.

D: Yeah.

E: Don‟t- don‟t let anybody know that. Don‟t let anybody know that you take medication.

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D: Yeah, I guess whatever you call it, whatever conceptualization you have, or whatever label you put on it, you- you know, it‟s- it‟s… y- you have to be- people are gonna have to be accepting of it in order for… to feel comfortable in the world. You know, in society.

E: And see, that‟s the thing back in the, I mean now they‟re saying in this article… (E mentions about an article that rated the mental health services provided by each state). But, you just said a word that really I didn‟t like, that stank, that I need to let you know.

D: What‟s that?

E: You said a word that I- that I- want- makes me want to go buy a gun and start shooting people.

D: What word is that?

E: “Label.”

D: Label?

E: I- I- I don‟t mean- I‟m not angry with you. I‟m just saying that word, for some reason just kind of… I don‟t like that.

D: Hm.

E: I don‟t know why, but I‟m- I‟m- I‟m thinking labels are necessary, but they‟re overused in today‟s society.

D: Absolutely.

E: Now, you look in years ago when they said in that article – and I asked my husband, “How did they know somebody like whoever, Roosevelt, or whoever they were talking about, was bipolar?”

D: Yeah.

E: And he said, “Well they probably looked at his behavioral, you know, his behaviors and then just attached that label to him.”

D: Right. Right.

E: And I‟m like, “well that‟s- that‟s what they did to me.”

D: That‟s how they do it now. There‟s no, uh… they can‟t give you a blood test that says, “Oh, you‟re bipolar.” So… (laughs).

E: Or- or “you‟re depressed” or you‟re this or you‟re that.

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D: Yeah. Yeah. They have to go on your behavior.

E: See, psychiatry- psychiatry, they give them a medical degree. It says M.D.

D: Yeah.

E: But it‟s not a science.

D: Yeah… (laughs) Or-

E: I mean, they don‟t even know how ECT works, yet they‟re doing more of it now they say, than they were years ago.

D: Yeah. Yeah.

E: So I mean, how can people make these- you know, take this pill, take that pill, take this pill, when…

D: Yeah.

E: …when there‟s really no true evidence that it really helps.

D: And that‟s why – you said you‟ve talked to some (mental health survivor organization) people – that‟s why they hate the term “mental illness.” It‟s because you‟re saying that it‟s an illness- that it‟s a disease- it‟s a disease model, where- where as there‟s no proof that it‟s an actual disease…

E: Yeah, and I don‟t think- I, um…

D: …and that‟s why they hate that term.

E: …like- I guess I don‟t it because it says mental illness, but I think that it‟s- it‟s a disability. And that…

D: Yes. Yeah, I think you can say something is a disability without necessarily saying it‟s an illness.

E: A mental illness.

D: Yeah. Absolutely.

E: And I- and I think that, that‟s what the approach that the mental health has to have with the people that they help and (inaudible word)…

D: A disability-based approach?

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E: Yeah, a disability approach…

D: Okay.

E: …and that‟s what society… because nobody‟s accepted mental illness from Abraham Lincoln‟s time up to 2006…

D: Mm-hm.

E: …so what- what‟s gonna work? Even if you educate them that these behavioral things can be treated, whether it‟s through psychiatry or psychology, er…

D: I‟ve read- I‟ve read that before, um, what you just said.

E: What‟s that?

D: The- the disability?

E: Mm-hm.

D: (describes the disability inclusion model of reducing stigma in the mental health system)

E: Well, I think if you say mental illness, because if you look at the history, which is a good idea to get an idea of what works… they never would say… I mean, what did they call them, insane asylums?

D: Yeah. Yeah.

E: And then they went to “mental health?”

D: Right.

E: Well… and “mental health” may sound a little better than “insane”…

D: Mm-hm.

E: …but you‟re still saying the person‟s nuts.

D: Mm-hm.

E: They‟re crazy. So maybe if you just say disability, you know, it sounds better than saying flour and chocolate chips.

D: (laughs)

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E: I mean flour and chocolate chips - doesn‟t “chocolate-chip cookie” sound better than just flour or chocolate chips? And…

D: Right. Right. It‟s a whole- like a whole- you‟re looking at the whole product or the whole person rather than one aspect of their life.

E: Exactly.

D: You‟re not break- you‟re not reducing it to the flour, the eggs, and the chocolate chips. You‟re looking at the whole finished product; you know, who the person is.

E: Right. And I think that‟s what my husband – now that I think about it – what he was feeling, was that it was more of a… a label.

D: Like they were defining…

E: They were saying that there‟s something wrong with his wife...

D: Uh-huh.

E: …when he- when he sees other parts of me that he likes.

D: That- that makes a lot of sense, yeah.

E: And he- and- and- why is he gonna like something if there‟s all- so many things wrong with her.

D: Mm-hm.

E: They‟re saying that I‟m- I‟m a bad person because… I‟ve got a… disability, in a sense. And I don‟t think he even likes to say… psych- you know, psychiatry or that I‟m- I have psychological issues.

D: Uh-huh.

E: I mean, even that to him I think, he doesn‟t like; that doesn‟t sound good.

D: Yeah.

E: Because of the stigmatism of- of society. So I- I think this lady you‟re talking about, (the author I referred to previously), her approaches would definitely work, rather than…

D: Yeah.

E: …than labeling it as a mental health, or a- uh… mental thing, „cause even my dad, and I mean, he‟s 85…

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D: Mm-hm.

E: …he- he doesn‟t like that word, “mental health.”

D: Mm-hm.

E: He- he- despised it, and because for somebody to say that his daughter has mental… issues means that he did something wrong.

D: Mm- hm… that‟s-

E: But what I was saying to him, he- he- that‟s what happened.

D: Yeah.

E: It was my up- a lot of it was my upbringing is why I have the problems I do today.

D: Yeah. I think that‟s why (the consumer family/organization she referred to previously) is so biological-medical oriented… is because they don‟t want to blame…

E: I think it‟s because they get their money from pharmaceutical companies.

D: Well yeah, but I mean… they started long before they ever got that funding.

E: Oh, okay.

D: Um… but the reason I think they head in that- headed in that direction is because parents felt blamed, so parents and families started the organization and were very… trying not to- to go with any model that- that put any responsibility on family whatsoever.

E: That-

D: And- and the biological model blames your brain. It doesn‟t blame your upbringing, so that was safe.

E: And that‟s bullshit.

D: Yeah. Yeah, I think everybody needs to take responsibility. I‟m not saying blame mom and dad for everything, you know. But…

E: Right. I mean- I‟m gonna- I mean…

D: …everything contributes, society, um… you know. The- the government, your upbringing, everything, you know, plays a part in how you experience the world.

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E: Well, when I was driving home from (her psychologist’s) and I sat in the parking lot for half an hour before I left, „cause I was- I could- I could tell I was on fire and I that had no business being on the road.

D: Mm… you needed just to calm down?

E: I just needed to calm down and pull my shit together.

D: Uh-huh.

E: And… so I just kind of sat there and then before I realized it I had been sitting there for over a half an hour. But on the way home I thought, you know, when I was- when I had the label, as you- uh… our society likes to use…

D: Yeah.

E: …when I had the label as a professional athlete, I got respect.

D: Mm… “athlete” was your label? Was-

E: I was a professional athlete for those years.

D: Yeah. Yeah. That- that- that makes a lot of sense. You say “professional athlete” and people are impressed.

E: I mean, I had a support team of um, a medical doctor, a podiatrist, a massage therapist…

D: Yeah.

E: …and companies that supported me to fly all over the country.

D: Mm-hm. Mm-hm.

E: And my family supported me.

D: Yeah.

E: But… now it‟s like, you don‟t get that same respect or support, because it‟s- it‟s emotional.

D: Right.

E: And…

D: And even… I would even go far to say that even when you had the label, “professional athlete,” that wasn‟t all of who you were. That wasn‟t- that…

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E: But that-

D: …that wasn‟t just you. Th- there was- that was part of you… you know.

E: But that‟s all that society- I mean that‟s…

D: But that‟s what people see, yeah.

E: I mean, what about when I was in high school? They forged my grades because I was a- a star swimmer.

D: Oh, wow.

E: I mean, I graduated from college and- or from high school, and… at the college I went to in (the state that her college was in), the junior college, they said I was reading at a second grade level after they did all this testing.

D: Mm…

E: How do you graduate from high school reading at a second grade level?

D: Mm…

E: But I was an athlete.

D: Yeah.

E: So I went on to know, well I‟m okay because I‟m an athlete.

D: Right, right.

E: But then I started realizing that there is an importance in gaining an education and being able to do something other than run for a life.

D: Yeah.

E: But society still seems to put people into, uh… little categories and labels…

D: Yeah.

E: …whether it‟s professional or- or personal, and it- it really stinks.

D: Yeah. It makes it easy- it makes it easier, but it‟s- it‟s dangerous. It‟s really dangerous.

E: Yeah, I think-

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D: It- it makes it so you don‟t have to get to know the person. You can just look at the label. You know; oh: depressed. Oh: bipolar. It means I know something about the person. Well I would argue you don‟t know anything about them… from just seeing a bipolar label. People could be... you know, have mood swings for very different reasons.

E: Or an attorney?

(E briefly talks about how picking an attorney was difficult because the label, “attorney” did not tell her much about what the person was like).

E: And that‟s why I went hog-wild and talked to ten different attorneys before I finally- and to think I went for somebody who just graduated (laughs slightly).

D: (laughs)

E: But she- I mean, she was most open-minded and- and…

D: Uh-huh.

E: …unbiased and she didn‟t tell me she could sell me a car…

D: Yeah.

E: …that wasn‟t gonna work.

D: She had the qualities you were looking for.

E: She had the qualities I was looking for because she wasn‟t biased and she didn‟t have this- she wasn‟t… saying that she was God.

D: Mm-hm. Mm-hm.

E: Where everybody else was- but see, that‟s what I was taught as a kid. Doctors are God.

D: Yeah. That is- I guess that is a message you get as a kid.

E: If you have a doctor or a Ph.D, an M.D., or one of these professional labels… that means you know everything.

D: Right.

E: I mean, that‟s what I learned as a- as a youngster.

D: Mm-hm.

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E: Now, it‟s taken a lot of years, but I‟m finally realizing that you‟re just- you‟re just- you take – pardon my French – but you take a shit every morning, just- or I hope you do occasionally…

D: (laughs)

E: Um… or you need some prunes.

D: Otherwise there‟s something wrong, yeah (laughs).

E: Or- or- or I‟ll send you a box of prunes. And I hope that through your childhood, you learned it‟s a good idea to flush the toilet.

D: (laughs).

E: Um… but everybody – even attorneys and doctors – hopefully take shits!

D: Yeah.

E: But, I- you don‟t talk about that. You‟re not supposed to talk about people‟s shit. That‟s- keep that quiet.

D: Right. Right…

E: Yeah, put that in your paper!

D: (laughs).

E: That somebody said that…

D: I may. I might. (laughs). It- it might have a place; it might fit somewhere.

E: (laughs). That everybody takes a shit?

D: Yeah.

E: Oh.

D: I mean- what- if- if you‟re gonna look at power- power structures… and uh… you know, what role you‟re in society, how much power you have, um… that makes a lot of sense, you know. I mean, everyone‟s still a person. Everyone‟s still a human being.

E: Well, they did a- there was a thing on the radio…

(E describes a dinner she heard about in which everyone had to interact blindfolded and how it led to her thinking about how people would treat each other more equally if there was no money, labels, or hierarchies. This leads into a story about how her husband thought it was strange that

294 she borrowed some bread from a neighbor when she ran out and how people are not as friendly to their neighbors and other people they meet. She also mentioned that computers have made things more impersonal).

E: …there needs to be more, um, camaraderie and people sitting back and caring about one another a little bit more rather than being so driven by their labels and their goals and jobs and their… whatever. I mean…

D: Mm-hm.

E: And I think that‟s where animals come in for people that are disabled or whatever it may be.

D: Right. They‟re always gonna be there. They‟re not gonna judge you.

E: Right, and then my husband the other night… he- he looks at me, he says, “You think you need to go to the hospital?” I said, “What for?” He said, “Well… you‟re talking about getting rid of your antiques and giving them to (a friend).” And I said, “Well – why not?” And… he could just tell that I was- wasn‟t doing well, and I said, “What- what are they gonna do for me at the hospital?” He said, “Well… help you.” And I said, “They haven‟t helped me in the last six years, so what‟s it gonna do now?”

D: Yeah.

E: Wh- what‟s- what‟s the worth? It‟s gonna be the same old stuff. I‟m gonna get there and I don‟t like the situation, so… I‟m gonna tell the doctor, and…do what they want me to do and make sure my hair‟s parted right, and tell them the right things and they discharge me.

D: Mm-hm.

E: So what‟s the… if- if it‟s not helpful then why do it?

D: Yeah. You-

E: And that‟s- that‟s the thing with the mental health. So many dollars are put on just to house people when they‟re of danger to themselves rather than looking at what they can do to change things in their lives so that they can become more socially productive.

D: Mm-hm. Yeah. You- uh… I- I really believe you- you probably know what is best gonna help you more than anyone.

E: Right.

D: More than anybody in the hospital, you know- you know what is good for you. You know? You may- you may not know exactly, you know- step by step, how to get there, but nobody‟s gonna tell you anything that- that you don‟t already know- you know, that you need…

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E: Yeah, I think- I mean everybody‟s that way with disabilities. They…

D: Yeah.

E: They‟ve fallen on their face enough times to know what might help them to not fall as hard. They may still fall again, but…

D: Right.

E: … they may have a little bit more cushion the next time.

D: Right. Gradually you kind of- you move in the right direction.

E: Right, and with support you can move in the right direction, but so many of the- the moneys are spent on just warehousing people with mental illness…

D: Yeah. To-

E: …rather than- and giving them a drug, rather than looking at…

D: Mm-hm.

E: …well… what can we do cognitively to help them deal with this disability?

D: Mm-hm.

E: So they spend all the money for doctors and everything and- and now I want to get tested but… most places are not gonna accept Medicare.

D: Right. That‟s something that‟s not- the money‟s not gonna get spent on.

E: Right, but they‟re gonna spend money for me to have my- have my brain zapped?

D: Yeah… that‟s- that‟s pretty ridiculous.

E: And see a psychiatrist who wants to give me… um… those pills that he wants me to take are like- retail for close to $300.

D: Mm-hm.

E: Aricept or something like that?

D: Mm-hm. And somebody‟s gonna pay for that…

E: Oh, Medicare will pay for that.

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D: …but not for testing.

E: But not for testing.

D: I don‟t understand it.

E: Th- the- there‟s something there, either I‟m confused or that doesn‟t make any sense.

D: No. No, it doesn‟t.

E: So, I don‟t know. Well, I better get to my granola (E wishes me luck in my project and asks about whether I’ve been able to find participants and talks briefly about other people and organizations she has found that have been helpful; e.g., an ECT list serve where she has met others who have had ECT, the mental health survivor organization she referred to previously).

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Appendix H: I Poems (Participant 2)

(Page 3-4): I‟ve gotten some ideas I‟ve also gotten some excellent help I I have to I can‟t really come out I‟ve gotta be very careful I disclose I‟ve obtained I don‟t want to offend somebody I can‟t say

I mean I know I talked to I can‟t I I slip I say the wrong thing I say “mental illness” I said “mental health” I said something I was like, “oh, okay” I‟m kind of afraid to say too much

(Page 15-16):

Am I using Am I wanting to drink I enjoy the wine I have to be extremely careful I don‟t even remember I went to treatment I went somewhere I remember I went to Alcoholics Anonymous I had a real difficult time I was depressed I would get I would get into a suicidal state I would save pills I wouldn‟t tell anybody I was realizing

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I was doing the wrong thing I‟d be in the emergency room I I‟ve had my stomach pumped I can remember I mean I even went to Mexico I figured I‟m going to kill myself I‟m just going to drink

(Page 17-18):

I find it extremely frightening I actually had somebody administer shock treatments I mean I think I‟ll drink I‟ll drink I drink it I‟m fixing dinner I know I might drink I‟m preparing dinner I don‟t even finish it I‟ll pour it

I was overmedicated I needed to I was in a definite depressed state I‟ll tell you I really I really I really have I have I mean I don‟t remember I don‟t remember I feel like I‟ve never I told you I haven‟t I can tell you I think I have a lot

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(Page 18-19): I feel I‟ve been I‟ve been violated I‟m not I want I supposed I can‟t I have very little recollection of my past I told my husband I said I really I need I feel like I‟m starting over

(Page 19): I really have to try I remember I have no recollection I- I- I need some quality I- I don‟t want I‟m gonna do something I went through I said I can‟t I‟m gonna I‟ll take it I‟ll take it I have no problem You know I I‟m like I don‟t care

(Page 34-35): I was extremely highly medicated I would take just certain ones I wouldn‟t take „em I was willing to take I saw a counselor I started saying

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I was kind of I started asking for it I enjoyed the feelings that I had after the ECT

I have no problem saying that I mean I I was getting attention I would have been I am I wouldn‟t have submitted I really wish I needed I could go back I can‟t even use it

(Pages 50-51): I don‟t tell most people I‟m coming right out I‟m I‟m tired of it I‟m being more vocal about it I mean I think I know what they want to hear I I had been I needed help I feel I‟m losing most of my options

(Pages 53-54): I called her I was upset I asked her about ECT I guess I feel guilty I‟m responsible I thought I‟m trying I‟m saying I have a learning disability I have a learning disability I have not been telling her the truth I‟m too up front

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How can I be up front with her?

(Pages 58-59): I can‟t seem to stop I‟m getting to a finish line I have I

I can remember I didn‟t finish I still feel bad I did

I was supposed to I ended up I had I just looked I said I pass I fail I‟m unconscious I‟m gonna keep going „til I cross the finish line

I don‟t I just said it I don‟t I guess I am I‟m very goal-oriented I- I- I want I want to finish things that I I start I‟m I‟m getting tired of fighting

(Pages 74-75): I felt I was just a recipient I‟m now paying for it I have rights I just want a different opinion I mean

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I- I felt like I had I was being told

I did refuse I wasn‟t compliant I would express I was having I wouldn‟t take it I just didn‟t feel I had I think it‟s important

I mean I mean I- I I can‟t I- I can‟t handle too much I‟m bipolar I say that I understand I had a mental problem

(Pages 95-98): I had the label I got respect I was a professional athlete I mean I had a support team I mean I mean I was in high school I was a- a star swimmer

I mean I graduated I went to I was reading I was an athlete I went on to know I‟m okay because I‟m an athlete I started realizing I think

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I went hog wild I went I mean I was looking for I was taught I mean I learned I‟m finally realizing I hope

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Appendix I: Content Poems (Participant 2) Mental Illness (Pages 4-19): I say “mental illness” Knowing that there‟s mental illness I‟ve always thought of it as mental illness Mental illness on my father‟s side of the family They went to a hospital for mental illness There‟s definitely mental illness I‟m tired of living with mental illness as something you can‟t talk about

(Pages 69-79): Somebody with a mental illness can be likeable Mental illness is a facet of many different issues Mental illness or physical disability They don‟t recognize mental illness as a disability Mental illness is amongst all the people Ex-presidents have faced mental illness Periods of chronic mental illness Mental health and mental illnesses

Disability (Pages 74-93): They deserve accommodations just like somebody with a learning disability Whether it‟s a mental illness or a physical disability There‟s an agency that‟s supposed to help somebody with a disability Yet they don‟t recognize mental illness as a disability A learning disability It was all because of a learning disability? If I said I had a disability of any kind… they wouldn‟t hire me

I think that it‟s a disability A disability approach If you just say disability, you know, it sounds better I‟ve got a disability

ECT: (Page 34): They eventually just convinced me that ECT would take care of all my problems and I would be back to normal

Before the ECTs and even during the ECTs I was extremely highly medicated

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I started saying how much the ECT was damaging me and then I started asking for it, because I enjoyed the feelings that I had after the ECT

(Pages 60-74): ECT is like taking a drug I quit the ECT I was driving somewhere else to get ECT The doctor who gave the ECT My judgment was not good, to keep going back for ECTs They wanted me to do the ECT, because they said I wasn‟t compliant with my medication

Memory Loss (Pages 15-45): Fear of the memory gone The memory process ECT was damaging me as far as mentally, and my memory

“There‟s a possibility it could damage your memory. It could keep you from functioning later on in life”

And now I have lost my memory My memory has been wiped Wiped almost blank Short-term and long-term memory are extremely damaged

I don‟t have any memory, so why should I continue?

Going to the hospital (Page 99): He says, “You think you need to go to the hospital?” I said, “What for?”

What are they gonna do for me at the hospital? They haven‟t helped me in the last six years So what‟s it gonna do now?

What‟s the worth? It‟s gonna be the same old stuff I‟m gonna get there and I don‟t like the situation

So… I‟m gonna tell the doctor, and Do what they want me to do, and

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Make sure my hair‟s parted right, and Tell them the right things, and They discharge me.

Miscellaneous (Page 1): An incompetent zombified electric shocked mental health patient.

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Appendix J: Transcript of Conversation with Participant 3 (Marcia)

D: So I thought I‟d start out with just some basic questions…um…

M: Okay.

D: …and I was wondering if you could just tell me a little bit about your family history or your cultural background.

M: Okay. Um… my um… family history, um… there was four boys and four girls. Um…

D: Okay.

M: We were eight kids, and my mother and my stepfather both were uh… alcoholics. And… well, my sister – my oldest sister – who‟s- who passed away three years ago, she… she had schizophrenia – paranoia schizophrenia.

D: Okay.

M: And she- her and me were the only two out of eight kids that were- that went and had a diagnosis done. So we both- we both, uh, had a psychiatrist and I- I have a counselor also.

D: Okay.

M: And, um… my culture background?

D: Um, yeah just your… either your ethnic background or just something that‟s important to you about your… your um, your- your family… background.

M: Oh me and- I, uh… am um… got Cherokee Indian in me. And I- I- I uh…

D: Oh, okay.

M: … value that.

D: Mm-hm.

M: You know… uh, I don‟t know much about my background, ‟cause I never discussed it with my mother, so…

D: Okay.

M: …that‟s about all that I know.

D: Okay. Is your… you said you value your Cherokee Indian background?

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M: Yeah.

D: Um, is there a way that it plays a part in your life… now?

M: Um… not really. Only that if somebody asks me, I tell ‟em…

D: Mm-hm.

M: …yeah, I got Indian in me.

D: Mm-hm.

M: But, you know, I read up on stories from long ago, what happened to Indians and stuff…

D: Yeah, yeah.

M: …and I think… that was wrong.

D: Yeah.

M: Stuff like that.

D: How they were driven- driven away and take- everything was taken from them. Yeah.

M: Mm-hm. Mm-hm. And how they‟re still struggling today to get back what was took from ‟em.

D: Right. Right.

M: Um…

D: Yeah. So that‟s a story that you sympathize with?

M: Right. I‟d like to know more about my heritage, background, but my- my real father, he‟s dead also, and I didn‟t- hadn‟t seen him since second grade, and I couldn‟t get any information from him even if I wanted to ‟cause he- you know, he had nothing to do with us.

D: Mm-hm. Mm-hm.

M: But I would‟ve liked to know more about it.

D: Yeah. Yeah, it sounds like an important part… of who you are.

M: To see, you know- yeah, to see what kind of people we had.

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D: Right. Right. Do you know the other ethnicity- or ethnic background that you have?

M: No. I would like to find out what my last name actually means… if it‟s like, German, British, whatever, but I have no idea.

D: Yeah, I don‟t know. Hm.

M: You know, and I- I- I‟m sure we got all- all kinds of mixed-up whatever.

D: Right.

M: Not just one certain background, because of- they said, I guess a lot of white people come from New England…

D: Mm…

M: You know, when everybody first came to America.

D: Mm-hm.

M: So I don‟t know if I got heritage from there or from some other part of the world.

D: Mm-hm. Yeah, well I guess that‟s what being American is... is- a lot of backgrounds.

M: I‟m- I‟m really interested in history…

D: Mm-hm.

M: …backgrounds and stuff like that. But I wish that I could find my family tree…

D: Yeah.

M: That‟s one thing I wish I could do, but I can‟t because I don‟t know nothing about either side of my family.

D: Oh…

M: ‟Cause I used to want to make a family tree…

D: Yeah.

M: I can‟t do it.

D: Is that because, um, your parents or your grandparents…

M: Never told me.

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D: …never told you about it?

M: Exactly.

D: Um, what was your relationship with your parents like growing up?

M: Oh, with my mother it was really- really close, ‟cause I didn‟t leave- I didn‟t move out from hers till I was forty years old.

D: Okay.

M: And we were really close. My stepfather? I didn‟t have such- well… I did have a- a close relationship with him, but uh… it- it wasn‟t good for what he did years ago, um… but somehow even though what happened, happened, always I would, um… go to him for answers.

D: Okay. So…

M: And… even though they drinked, we still had a close… family relationship.

D: Yeah. So… his drinking maybe got in the way of that sometimes, but… later on it was…

M: Well, it‟s other personal things that happened…

D: Okay.

M: …but, uh… wasn‟t great at all.

D: Yeah. Like, was he an abusive man… that kind of thing?

M: Sexual abusive guy.

D: Okay, okay.

M: And… I always thought back then that it was my fault; that I did something wrong…

D: Mm-hm, I- yeah, I think that‟s common.

M: …until I got into counseling. My son is 17.

D: Mm-hm.

M: I started counseling when he was only four. And then I- my counselor helped me realize what had happened was not my fault at all.

D: Right. Right.

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M: But, you know back then I used to think…

D: Yeah...

M: …“What did I do wrong?”

D: I think a lot of people think that, when they‟re in that kind of situation.

M: Mm-hm. Well, I had him that abused me and I had a uncle who raped me when I was seven.

D: Okay.

M: And, you know I never th- thought about him.

D: Mm-hm.

M: It was just what my stepfather did that bothered me.

D: Yeah. Yeah…

M: But um… other than that…

D: Was it- when you were with your stepfather…

M: Right.

D: …if you don‟t mind asking, was it younger? Were…

M: I was- the far back as I could remember I was five...

D: Okay.

M: …up till I was almost 15, but…

D: Oh…

M: …when I was in the teenage years, it wasn‟t what he did; it was what he was saying.

D: Okay. It was more…

M: You know - verbal abuse.

D: Verbal abuse – okay. Okay.

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M: And it was… because I took up for myself… when I was 13. That‟s when I first started talking back to him when he was trying… and I wouldn‟t allow it…

D: Mm-hm. Mm-hm.

M: …and he knew that I meant business, so… (several words unclear)

D: Yeah. So you stood up for yourself and…

M: Yes.

D: …and then he…

M: I finally was able to stand up for myself and tell him, “No.”

D: Yeah.

M: “You can‟t do that.”

D: Okay.

M: And… you know, he didn‟t try nothing. ‟Cause I wouldn‟t let him in it…

D: Mm-hm.

M: …but he sure said stuff ‟cause he was still drinking.

D: Mm…

M: I had to ignore it because it was the… the whiskey talking.

D: Right. Right.

M: But other than that I still talk to him and, um… he helps solve problems. So…

D: Okay. So you have a pretty good relationship now?

M: Yeah- well yeah, he‟s- he‟s been dead like 18- 18-20 years.

D: Oh, okay. But af- after…

M: Yeah.

D: Okay. And, did you- did you know your biological father?

M: No, like I told- like I said… the last time I seen him I was in second grade…

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D: Okay.

M: …and he came by the house to see me and he wanted me to move in with him, but my mother wouldn‟t allow it.

D: Mm…

M: So, I have nothing- he would- now, last time I heard from him actually was- I was 15 and he- my grandma had called over to the house, and wanted my sister, (sister’s name) and my brother, (brother’s name) to come over- well, my brother (brother’s name) was already over there- come over to her house…

D: Mm-hm.

M: …to see him ‟cause he was there. He did not ask for me. He had a picture of me in his pocket, but he claimed I wasn‟t his daughter.

D: Hm.

M: Yeah, I mean there was no love lost ‟cause there was none there to begin with.

D: Yeah. It sound- sounds like you really didn‟t have a relationship with him.

M: Right…

D: Okay.

M: So… that didn‟t bother me.

D: Mm…

M: But- but- how could it when I had no feelings for him?

D: Mm-hm. Mm-hm.

M: But um… but- how I found out he was dead, is- let‟s see… I was in my twenties- no, my early thirties. I was reading the obituaries and his sister had passed away.

D: Oh…

M: And I seen… preceded in death by… you know, a brother, (her father’s name).

D: Oh… Yeah. Yeah.

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M: So that‟s how I knew he- you know, he had passed away. But, I mean, it didn‟t bother me. ‟Cause-

D: You didn‟t really know him.

M: Exactly. So… that was that on him.

D: Mm-hm. So… what- what are- would you say are some of the most important relationships in your life right now?

M: Um… with my 17 year-old son. I‟ve had him since- he‟s not my biological. He‟s my- actually my great-nephew. I‟ve had him since he‟s a year old…

D: Okay.

M: …and I adopted him when he was ten. That and my niece that lives with me and her three year-old son. My niece is the one that found my mother dead.

D: Oh wow.

M: She had- what had happened is, my mother wanted to lay down and take a nap and she said she‟d eat later on, so my uh, niece and her cousin (cousin’s name) was at the house- at my mother‟s house, and- so my niece went to check on her two hours later and my mother was dead. I die- I- I died- (correcting herself): I moved out a week before she died.

D: Oh wow.

M: And… I used to blame myself really bad, thinking if I hadn‟t moved…

D: Mm…

M: …she wouldn‟t have died. Well, she died of a massive heart-attack in her sleep, so…

D: Yeah… nothing you could have prevented. Yeah.

M: Mm-mm. And… she- she did have skin cancer, but they got rid of it. But she had like 75% of her face gone…

D: Mm-hm.

M: …this side, including the roof of her mouth...

D: Wow…

M: …all were gone. And that ain‟t what got her. It was the heart-attack.

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D: Mm…

M: So she had two bad things going for her.

D: Yeah…

M: Bad heart – bad face.

D: Yeah, it sounds like she went through a lot.

M: She did… she really did. And she- she had a- an abusive stepfather.

D: Okay. Yeah…

M: So she knew- when I finally told her that it was her brother that raped me when I was seven…

D: Mm-hm.

M: …she understood. That‟s when she started telling me that her step-dad tried to do the same thing, but she got out of the house before it happened…

D: Okay.

M: …and he stabbed her in the leg with a ice pick.

D: Oh wow.

M: So she had a bad background herself.

D: Yeah. Yeah.

M: She knew what I was going through and understood.

D: Yeah, she understood. Yeah… well I can see why you were so close.

M: Yeah… and I didn‟t realize, you know, I thought maybe that‟s why she didn‟t help me when I was younger, uh… by getting away from my step-dad…

D: Mm-hm.

M: Um… she said she didn‟t know what was going on, of course because she was a really bad alcoholic…

D: Oh… okay.

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M: …and she didn‟t realize what he was doing until I told her… I told her… about three years before she passed away.

D: Mm.

M: And… you know, she- it was too late to do anything about it, ‟cause the guy that did it‟s dead.

D: Mm-hm.

M: The other one, he‟s still alive and every time I see him I think back to what he did and I want to hurt him so bad but I don‟t.

D: The uncle? Your uncle you mean? Yeah.

M: ‟Cause if there was something I could do about that, believe me, I would‟ve already had something done, but it‟s too late.

D: Mm-hm.

M: Too late to have anything done, so… I try to push it at the back of my mind and not even think about it.

D: Mm. Just try to- try to move on.

M: Yes. But there‟s times I have flashbacks.

D: Okay.

M: That‟s why the doctor… (name of her doctor’s name), uh… said I had, uh… Posttraumatic Stress Disorder.

D: Mm-hm.

M: You know, I have vivid flashbacks of what happened.

D: Yeah. Yeah.

M: And… lately it hasn‟t happened, but when I‟m in- really- a really depressed mood, it seems like it happens more often than it should.

D: Mm-hm.

M: And that gets kind of aggravating. Uh, anxiety sets in, and irritation and all that.

D: Yeah.

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M: But uh… that‟s all- all I can think of right now- that‟s I have to say.

D: So you were saying you were close with your mother and you‟re close with your- your son who‟s 17.

M: Yeah. Yeah. Oh yeah.

D: Yeah. Okay.

M: That‟s the close relationships.

D: Yeah.

M: And, my- my uh… one of my sisters- my second oldest sister, I have a close relationship with her. We do things a lot together.

D: Mm-hm.

M: And… that‟s- that‟s the only ones I can think of right now.

D: Okay. Alright. Um… the next couple of questions are just generally your experiences in the mental health system.

M: Okay.

D: Um… I wanted to start with how you first got involved in the mental health system.

M: Okay. My son… he was going to speech twice a week. He was… three… he- he had just turned four, and…

D: Okay.

M: …his, uh… therapist, seeing how he was having aggressive behavior…

D: Mm-hm.

M: …she told me- she said he needs to go to counseling, so… I went down and signed him up and… in the meantime when he was in counseling they had put me in a parent group.

D: Oh, okay. Yeah.

M: You know, so I went to a parent group while he was in counseling, and… we all were talking about different things, and they gave me and this other lady a paper to fill out. And right on the paper it says “Do you need a counselor?” And I wrote, “Yes I do.” And I explained the sist- excuse me, the situation on the paper, and usually it takes time for you to get a counselor, but it

318 took me… not even a week to get a counselor. So, I started going every day – not every day – every week to see her… and the first time I saw the counselor she asked me you know, about my background, and usually I don‟t tell nobody right off the bat until I get to know ‟em.

D: Mm-hm.

M: Well that day I just- it- I just- it all come out all at once and I explained everything.

D: Mm… mm-hm.

M: I‟ve been in counseling since… then I‟ve been in counseling 13 years now.

D: Same uh… counselor?

M: No.

D: Oh.

M: Um… I got- this is my third counselor.

D: Okay. I was gonna say, it would be- I would be surprised if you were able to keep the same counselor for 13 years.

M: Yeah… I had… one of ‟em quite a few years- about six… about six years…

D: Okay.

M: …and then I picked this other one, and she left, and then I got this one now that I‟m still with...

D: Mm-hm.

M: …I‟ve had about two years now.

D: Okay. So the first one you had for… a long- very long time.

M: About five or six years.

D: Yeah. When you said you… they asked if you needed a counselor on the paper, and you- you explained that you did…

M: Mm-hm.

D: …um, did you explain that you needed it for- for trauma, for sexual abuse, or…

M: I just explained the situations that happened when I was younger.

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D: Okay. And you said that‟s why you needed a counselor.

M: Yeah.

D: Okay.

M: I needed to talk to somebody to get it off my chest…

D: Yeah.

M: …the way I put it.

D: Yeah, it sounds like you did when you- when you met her, you…

M: Mm-hm.

D: …it- like you said, it all came out.

M: It did, and- and- one instance like I thought to myself, „man, I didn‟t believe I‟d actually tell somebody what happened when‟- but it felt good.

D: Yeah.

M: It felt like a big ole weight lifted off of my shoulders.

D: Yeah. I hear that from people sometimes, when they‟re first time coming in… and they have something like that.

M: Mm-hm. And… she was pretty nice. All of my counselors were pretty nice.

D: Okay.

M: You know, they understood... and the confidentiality thing…

D: Yeah.

M: …is what I liked, it‟s… only time they could talk to uh, somebody else is if I signed a release form.

D: Right. Right.

M: And… I told ‟em, you know- sometimes I told ‟em, “It‟s okay. If you wanna talk to the doctor about it, that‟s no problem.” You know, they have to get the release from…

D: Yeah.

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M: …like if they need to get records from the hospital or another doctor…

D: Mm-hm.

M: …I always sign a release form.

D: Right. Right. They‟re not allowed to share that without your permission.

M: Mm-mm.

D: Yup.

M: No, ‟cause if they do they can get in trouble...

D: Mm-hm.

M: …serious trouble, when it‟s supposed to be kept confidential.

D: Right. Right.

M: But- uh… yeah, I‟ve been in it like I said, 13 years.

D: Mm. So, overall pretty- pretty helpful?

M: Oh yes. If I hadn‟t went when I did, I don‟t know how I- or where I‟d be today; you know if I‟d be…

D: Uh-huh.

M: …in the hospital in the psych ward, or put in the institute…

D: Mm-hm.

M: …place.

D: Right. Right.

M: And… uh… I don‟t know how I would have reacted now if I just got one then when I did back then.

D: Mm-hm.

M: ‟Cause that was a big „motional… oh… trip…

D: Yeah.

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M: …that uh… um… seemed like it was going on forever until I took – like I said – took that first step.

D: Right; right.

M: Writing down that I do need one.

D: Mm-hm.

M: And like I said, it only took me like a week before I finally got one.

D: How-

M: I guess they thought it was like an emergency situation because of… still having in the- the… suicidal thoughts and stuff like that.

D: Okay. So you were feeling suicidal before…

M: Yeah.

D: …so like- you know, having the flashbacks then… feeling depressed.

M: Mm-hm.

D: Yeah.

M: And when I first start talking to the doctor, I told him I kept having this bad dream of… about eight men dressed all in black…

D: Mm…

M: …that would take me up to the river here on (a street near the river), wanting to throw me off the bridge, but I wouldn‟t let ‟em.

D: Mm…

M: And every time I‟d look in the water I would see my niece‟s face looking up at me, smiling. And I couldn‟t figure out what that meant… and he couldn‟t either, so one day I walked up to the river and I decided to go down the stairs to the- the water…

D: Okay.

M: …just- you know, trying to face my fear.

D: Yeah.

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M: And I walked to the water and what I seen was not my niece‟s face looking up at me. It was my own face.

D: Mm…

M: And- ‟cause I- see, I can‟t swim in the first place.

D: Mm-hm. Mm-hm.

M: And I don‟t know why it made me look- made me look at myself in the water. And after I had faced that fear, I was okay. I didn‟t have the dream no more.

D: Mm-hm. Mm-hm.

M: And…

D: Sometimes that happens, yeah. Once you face the fear.

M: I did, believe me… it- it was kind of like a… what do you call that? Grim Reaper.

D: Okay. The men- the black…

M: Mm-hm.

D: …men dressed in black. Yeah. Yeah.

M: Yup. It‟s kind of like telling me I need to end my life right then, and- but when I went down to the river and seen that picture, and I- I thought, “Uh-uh.”

D: Mm-hm.

M: I am not ready for something like that. You know, um…

D: Wow…

M: So far I‟ve been pretty good on not having- I haven‟t had a bad dream like that… that bad, in uh, quite a long time.

D: Mm. When- was that before you had went to counseling, or after – when you saw- went down to the river?

M: Just when I- just when I first started going to counseling.

D: Oh, okay. That sounds like a big turning point for you – being able to go down there and... seeing yourself in the river.

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M: Yeah, I had to make myself go, ‟cause I wanted to find out if I could see my niece‟s face more clearly…

D: Mm-hm.

M: …but when- like I said, when I got to the water, the edge of the water, I looked down… and I seen myself staring up.

D: Mm-hm.

M: I mean, the head was big, like this (M gestures with her hands), but uh… it‟s like… that‟s a wake-up call.

D: Mm…

M: But, um… and the only other situation I had that bothered me was… I- I have never known- known myself to sleepwalk, and… about four or five months ago… I was laying in bed, and I woke up to look over to see if my son was in bed with me, and I was thinking he was still three years old. And I got up… and looked over at the side of my bed to see if he fell on the floor, and he didn‟t. So, I got up and went into the front room… and he wasn‟t in there… and I come back to my room and looked again, he wasn‟t in there. I started panicking real bad. And I went to knock on- I knocked on my niece‟s bedroom door and opened it up, I said, “Have you seen (her son)? Somebody stole him.” And… right then and there I- (M snaps her fingers) I woke up and I looked in his room and he was there. He‟s…

D: Mm.

M: …he was 16 at the time, but he was laying right there. I have had a- woke up with a panic attack…

D: Mm-hm. Mm-hm.

M: …thinking my son was, uh… kidnapped.

D: Yeah. That‟s scary… having a dream like that while you‟re sleepwalking.

M: Yeah. I have never s- sleepwalked before…

D: Hm.

M: …as far as I know, and nobody has told me ever. But somehow I snapped back to reality that night, and realized my son is a 16 year-old boy… not a three year-old child.

D: Right. Right.

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M: And you talk- my- my heart was going like… (M pounds her chest several times to indicate her heart racing). I mean it scared me that bad. And I hadn‟t- did nothing or said nothing that day to make me have a bad dream like that, you know?

D: Mm-hm. Mm-hm. It just kind of happened?

M: Yeah. Yeah, it did. It sure did. It‟s like – damn. Excuse my language, but that‟s what it felt like.

D: So, you said you had the three counselors, um…

M: Yeah.

D: …were there- have you ever received any other kinds of treatment, other than just counseling?

M: Um… well I see my psychiatrist. Um… I‟ve been in the hospital quite a few times over having… a- um… suicidal and homicidal thoughts.

D: Okay. Was that before uh… you saw your first counselor or after?

M: Afterwards.

D: After?

M: Afterwards.

D: Okay.

M: In fact, the last time I was in the hospital was back in October. Oh… there‟s one other situation that I was- I‟m thinking about. Let‟s see, living when- when I lived with my mother, I was have- I was hearing these voices really bad.

D: Okay.

M: And I described it to the doctor like this. I said, “Here‟s the child‟s voice, here‟s the female voice, and right in the middle is the male voice.”

D: Okay.

M: And that‟s how I was feeling at the time, and you know, the male voice was more growly- grouchy, than the other two, and it was telling me to kill each member of my family… and to bury ‟em in the backyard just to see what it was like killing somebody.

D: Wow.

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M: And that scared- that really scared me. That‟s when I would start talking to him, and um… he told me I needed something to help me with the anxiety. So he gave me some…

D: Okay.

M: …I was already on Prozac; he gave me something else to help with it. And it took care of it.

D: With the voices? Y-

M: Oh yeah.

D: Yeah.

M: Them voices. It‟s been about a month or two since I‟ve heard any voices, but- uh… the only- when that happened was- it sounded like somebody calling my name and telling me to do something, but nothing like what I just told you.

D: Mm…

M: But, um… every once in a while I‟ll… I can see things, like on the wall… and I hear things and smell things that are not there.

D: Okay, so it‟s not just hearing things. It‟s seeing and smelling things.

M: And smelling. ‟Cause I was in my case manager‟s car one time and… I said w- what kind of incense you got right there? You know, the car incent (her word) thing.

D: Mm.

M: She told me it was like- how did she say, like blueberry? I said, uh, “Well right now I smell a strong odor of strawberry cake.” As if it was just coming out of the oven.

D: Mm-hm. Mm-hm.

M: She said, “I don‟t smell it.” I said, “I sure do.” It‟s kind of like my mother‟s strawberry cake that she used to make.

D: Oh, okay.

M: ‟Cause my mother was big on baking cakes on holidays and stuff...

D: Mm-hm.

M: And I don‟t know if it was that I was thinking about her and I smelt it or what.

D: Maybe. I don‟t know.

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M: But uh, th- there is times that I can smell stuff really strong as if it‟s actually there and it‟s not.

D: Yeah. Yeah.

M: That‟s been – like I said – a month or two since that‟s happened.

D: Do you remember when the first time was that you heard a voice or saw something that wasn‟t there?

M: Well… um… when I first started counseling and I first seen a doctor I had a situation where I seen this little boy in blue jean coverall- co- you know, the- what‟d they call ‟em? Coveralls?

D: Yeah, yeah.

M: And… he had on a red shirt- red checkered shirt, and his- it- I guess it was his little sister – he had brown hair. And his little sister had on a white frilly dress with black patent leather shoes…

D: Mm-hm.

M: …and she had long brown curly hair. And… I told the doctor. One time I was like this looking over by his cabinet, and he‟s trying to get me to look at him…

D: Mm-hm.

M: …and I kept looking over there, like this. He said, “What‟d you see?” I said, “I see them little kids.” He said, “Can you get ‟em to talk to me?” I said, “No.” He said, “Why?” I said, “‟Cause they don‟t like you.”

D: Mm-hm.

M: (Laughing) It was kind of funny…

D: (Slight laugh)

M: …when I talk about it now, but um… he said, “They don‟t?” I said, “No, ‟cause they got mad at me ‟cause I told you about ‟em the other day.” He said, “Oh…”

D: Oh…

M: But I haven‟t seen that in years.

D: Okay. Was that around the time where you first heard the voices?

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M: Mm-hm.

D: Do you remember how old you were when that first happened?

M: Oh… let‟s see (pauses). That… would be back when I was about… 34-35.

D: Okay.

M: I‟ll be 46 this month, so it‟s been about that long.

D: Okay. So you first entered counseling maybe around that age – 34?

M: I- I- I believe so.

D: Okay. Alright, um…okay, so I asked you about the counseling… oh I w- was- w- wondering what your experience of being hospitalized were- uh… was. Was that something that you had chose to do ‟cause you were feeling suicidal? Or…

M: Yes, um, I was h- like I said, I was having them real bad suicidal thoughts and I was- it was scaring me.

D: Yeah. Yeah.

M: So- my- I don‟t remember… it‟d been three… four years since I first had my first experience in the hospital. I stayed like a week… and uh… they- they helped me out a lot ‟cause I had um, therapy groups in there and I was able to talk to the nurses when I needed help.

D: Mm-hm.

M: One time- let‟s see… I don‟t remember if it was my third or fourth time in the hospital. Um… I- I drew a picture of this little- this young guy who was all- dressed all in black and he had a bl- he had a black shirt, black pants, black shoes, and a black baseball cap on.

D: Mm-hm.

M: And I could see his shadow on my wall, as if I‟m looking at you right now. And I went in my room to lay down, and I could have swore I seen him run behind the garbage b- garbage can in the bathroom, so I walked up to the nurse‟s station, and she said, “What‟s wrong?” I said, “I want you to go check my room. I‟m not gonna go back in my room till you check it.” She said, “What‟s wrong?” I says, “There‟s somebody in there.” There was a- you know, another patient in there, but I was talking about somebody on my wall…

D: Mm-hm.

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M: …or you know, that hid behind the garbage can. “I need you to go look, ‟cause I‟m not gonna go to bed until you look.” So she went in and she said, “Honey, there ain‟t nothing back there.” I said, “I just wanted you to check and make sure because I seen it jump behind there.”

D: Mm-hm. Mm-hm.

M: It was just like it was playing peek-a-boo trying to scare me. And I forgot what medicine they- think they had me on like Ativans at the time, and I was just hallucinating. But… it‟s been… three, four years? Something like that. I lost count. I‟ve been in so many times I‟ve lost count.

D: Okay. Mm. When you go in, you usually- do you get to a part- point where you‟re not feeling suicidal anymore, and you…

M: Right, I feel safe.

D: You feel safe, yeah.

M: Yes.

D: So the hospital is a place where you could stay safe, and... feeling better.

M: Yes. Like three years ago now, I got probated when I was in the hospital and I had to spend two months up at um… what is that place called? Oh God, I can‟t think of it now. But it was two- I spent two months in (a nearby city) at this residential home.

D: Okay.

M: Could of stayed longer, but I told ‟em I was ready to come home…

D: Mm-hm.

M: …to my own apartment.

D: Mm-hm. So you have an apartment here?

M: It‟s called (name of the facility), that‟s what it was – (M repeats the name).

D: Oh. So right now you have an apartment here in town?

M: Yeah. With- I live with my son and my niece and her…

D: Mm-hm.

M: …three year-old boy.

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D: Okay.

M: And I have them to let me know- ‟cause here lately I‟ve had aggressive behavior towards people here…

D: Okay.

M: …people- my people at home, and I don‟t realize it till it‟s too late and people tell me, “You‟re not acting like yourself.” Like yesterday, I had an argument with my son, and he‟s trying to talk to me calm, but…

D: Mm-hm.

M: …here I am flying off the handle. He said, “Mom, you‟re not yourself. What happened? What‟s wrong?” “Nothing‟s wrong,” that was my attitude. I didn‟t want to tell him that something was wrong.

D: Mm…

M: And then I- after I stopped awhile and thought about what I was saying, I realized, th- there‟s something going on, um… that… needs to be addressed with the doctor, but I had- I was supposed to see (her psychiatrist) on the 26th, but I was in the hospital at the time over my leg and I missed my appointment and I can‟t see him till the end of this month now... and tell him what's going on.

D: Okay.

M: And maybe he can recommend something.

D: Mm-hm. So you- you recognize when things that aren‟t feeling right for you, and you…

M: Oh yeah, I can tell when I‟m uh… ready to have a- a outburst or something…

D: Mm-hm.

M: …‟cause I get real tensed and irritated for no reason, it just happens.

D: Right. Right. Okay. For right now you- you see your doctor, um… and you- you‟re on medication right now?

M: Yes.

D: Okay. Alright. Do you know what you‟re on?

M: I‟m on… Seroquel, uh… Trazidone, Lamictal, Topamax. Let‟s see, I think that‟s… yeah I think that‟s all.

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D: Okay.

M: Oh – Risperdal Consta; that‟s a shot.

D: Oh yeah. Okay, yeah. And you um, and you have a counselor too right now?

M: Yes.

D: Okay. Alright. So other than that, the only other treatment you had has been the… well you said you went to parenting classes awhile back. Um… have you done an- any group- other groups or anything like that?

M: Oh, I‟m in a women‟s group.

D: Oh, okay.

M: I‟ve did the serenity group, I‟ve did the um… self-esteem groups…

D: Uh-huh.

M: Stuff like that, that was- that was held here when all the counselors was here.

D: Mm-hm.

M: This used- this just recently – about three or four years ago – became a social club.

D: Okay.

M: Before, all the counselors and stuff were here, and we would have self-esteem groups, we had women‟s group. We still had women‟s group here, but we‟re waiting on it to start up again. We had a serenity group, we had a… oh we had all kinds, like a newspaper group, we worked on a newspaper here…

D: Mm-hm.

M: …art groups…we go on field trips…

D: Okay.

M: …go to different places.

D: So they used to do counseling here too.

M: Yeah.

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D: But now it‟s mainly for activities and groups? Social…

M: Yes – just a social club now for people with mental illness. See we all… here all together got a mental illness.

D: Mm-hm.

M: We all come here to talk with each other, ‟cause here they don‟t discriminate.

D: Right. Right.

M: You know, we can be ourselves as long as we‟re not arguing, you know…

D: Yeah.

M: …stuff like that. Uh, but everybody here just about has the same problems, but we can deal with people…

D: Mm-hm.

M: …like at- they don‟t judge us here like the outside world does.

D: Mm-hm. Right. Right.

M: They look at you as if you‟re not worth talking to. The people here don‟t judge you like that. We all stick together.

D: Mm-hm. It sounds like a great place to have – it‟s great to have a place like this.

M: It is – it really is. ‟Cause even the worker, (name of a staff member), the one who works with (name of the program coordinator), the- the head coordinator…

D: Mm-hm.

M: …they- they treat us with respect like we treat them w- with respect.

D: Right. Right.

M: You know, they don‟t hold one above the other. We‟re all treated the same.

D: Yeah. Well that‟s great.

M: Yeah, it is. And we‟re really lucky to have ‟em.

D: Yeah. Yeah, it sounds like it. Alright, well I‟m gonna move on to some of the questions that are more about stigma.

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M: Oh- okay.

D: Okay? We‟re kind of heading in that direction anyway.

M: Okay.

D: Um… you- you mentioned- before we started, you had mentioned a couple things, but I want to go back to those kinds of things.

M: Okay.

D: Um, in what ways have you experienced stigma or negative stereotyping, um… and that could be either because of having a- a mental illness or having a psychiatric label, or for- you know, other related reasons.

M: Um… like if I‟m out and somebody knows… like the situation I told you with the lady at the office.

D: Mm-hm.

M: If somebody (coughs) looked at me like that and- and takes a step backwards, like, “I don‟t want to be around you; I might catch what you have.‟

D: Uh-huh.

M: You can‟t catch a mental illness from somebody.

D: Right. Right.

M: I don‟t like being judged because I have that. I want to be respected with what‟s here… (she gestures toward her chest)

D: Mm-hm.

M: …and what‟s up here (she points to her head), not what I have…

D: Mm-hm.

M: …‟cause what I have is treatable, and it‟s not a mentally retarded thing…

D: Mm-hm.

M: …is what- is what people… think. That‟s not true. If they would sit down and take the time to talk with a person with a mental problem, they‟d find a whole different person.

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D: Right.

M: But they don‟t do that.

D: Right.

M: They‟d rather judge than uh, talk. And… I… that‟s my first rule- negative thing is when the lady at the office looks at me, but she‟s like looking through me…

D: Mm…

M: …and she looks at my niece and they- talk- and I‟m the head of the household…

D: Yeah.

M: …and she talks to her, and I told – I forgot who it was I told – I said, “Next time I go to the office to sign the lease form, I‟m gonna tell her „don‟t look through me – look right here so I can see what you‟re saying.‟”

D: Mm-hm. Mm-hm.

M: “„…don‟t try to act above me, ‟cause I know what I‟m talking about.‟”

D: Mm-hm.

M: I‟m gonna let her know, you know, don‟t judge me because I got a problem. But that‟s the only real… negative thing about it.

D: People judging you and not- not…

M: Not seeing the real person.

D: Right. Not talking to you.

M: Right… and that‟s- I don‟t like that. I can almost-

D: Yeah.

M: To me… I can almost actually, you know- people getting discriminated- discriminated against for their color…

D: Yeah. Yeah.

M: …uh… I can mo- I can almost- it almost feels like that to me.

D: Okay. Since you-

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M: Same situation, but it‟s you know, it‟s just- same- um... – what do you call it? – negative thing…

D: Mm…

M: …except it‟s a different situation, like a- has to do with mental illness „stead of a color.

D: Right. So they see something that‟s different and they… judge based on that?

M: Yeah. Yeah. Exactly.

D: Yeah. Yeah. How old is your niece, by the way?

M: She‟s 27.

D: Okay.

M: And… she- actually she‟s been with me for about four… almost five years now. Um… she does- she likes doing the cooking. She- she helps us with the cleaning of the house. She goes- picks up my checks for me. She goes to the grocery store for me…

D: Mm-hm.

M: …she does laundry for me, so she (unclear)… she does a lot.

D: Mm-hm. Yeah, she sounds like a big help.

M: This is her idea… to do it for me.

D: Uh-huh.

M: You know… and I appreciate everything she does, but she helps out a lot. And eventually, like next year maybe, she‟s gonna get her own place so her and her son can have a place, and „course I‟m gonna miss her.

D: Yeah.

M: ‟Cause I‟m used to her being there, but I know she‟s gotta go…

D: Right. Right.

M: …you know, when she wants to, so I‟m not gonna hold her back.

D: Okay. Alright. Um… were there other… uh… examples of uh… stigma or stereotyping you wanted to talk about?

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M: There‟s nothing else I can think of right now.

D: Okay. Um… and then what about um… discrimination? Um… in what ways have you felt discriminated against because of you know, having psychological… problems or mental illness label? Um… and what I mean by that is either being denied um… rights, you know, or services, being treated unfairly, being excluded, or being att- attacked, or… in some way, verbally or…

M: The only thing that I can think of is somebody treating me as a child.

D: Okay.

M: I don‟t like that, because I am not a child…

D: Mm-hm.

M: …and they make you feel inferior.

D: Mm…

M: But I haven‟t had no real bad discriminating things…

D: Okay.

M: …not yet. I ain‟t saying I never will you know…

D: Sure, yeah.

M: …so far I haven‟t.

D: Okay. So… there- there hasn‟t been a time where you… you know, you felt you were entitled to something, or you have- your rights were taken away or something like that because of…

M: Not that I can think of right now.

D: Okay. Alright. Okay, um… now I‟m gonna ask um… about what ways uh, your experiences in the mental health system, um, have led you to feel more empowered in your life, and by that I mean being able to make your own choices, uh, being able to express yourself and participate more fully in society and in your life.

M: Um…

D: How- how has the mental health system helped you with that?

M: They‟ve helped me a lot… like I said. They‟ve helped me „specially when I first got my counselor.

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D: Mm-hm.

M: I was able to express how I was feeling and what made me feel like that. And… um… another thing they did was they made me feel, you know, that I am in charge of making my own decisions. I can…

D: Okay.

M: I can um… I know when I‟m able to tell somebody, “No I don‟t want to do that.”

D: Mm-hm.

M: Because I used to feel that if I said “no” to somebody, I felt real guilty.

D: Okay.

M: They got me to where now I don‟t feel guilty if I need to say “no.”

D: Right. What- what was it that- that got you to that point do you think?

M: Um… my counselor telling me I had the right.

D: Okay.

M: It was my right of way.

D: Mm-hm.

M: I mean nothing- she said, “Don‟t let nothing hold you back. If you got something to say, say it.

D: Mm-hm.

M: “Be it negative or positive, you got a right to say it.” I didn‟t let no real bad negative come out of my mouth.

D: Right, right.

M: You know, if I did, I expressed a way that it wouldn‟t hurt nobody‟s feelings.

D: Okay. So she helped you see that you had the right to say what was on your mind. Or…

M: Yeah. Even if it was to her or to the doctor.

D: Mm-hm. That‟s great.

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M: If I felt that they wasn‟t doing something right, I had a right to let ‟em know.

D: Right. Right.

M: And… well you know, they never did nothing for me to tell ‟em, “Hey, I don‟t like this.”

D: Yeah. Yeah…

M: They told me I could speak if I want to, or if I didn‟t feel like it. Like you told me, uh… and if I didn‟t want to explain something, I didn‟t have to.

D: Right. Right.

M: Stuff like that.

D: Mm-hm. So you had the choice to do that.

M: I had- I got to make my own choices.

D: Mm-hm. Your uh… your opinion would be taken seriously, and…

M: Yeah.

D: Yeah.

M: Yeah, they said no matter what you said, we will- you know, it will be- we‟ll take it, like you said, seriously. Um… I said, “Okay,” you know. And I felt good that somebody like that told me it was okay for me to speak up.

D: Mm-hm.

M: You know, it‟s- ‟cause I wasn‟t never taught to speak up. And…

D: Right. When you were growing up that wasn‟t…

M: Exactly.

D: …it wasn‟t something that you were allowed to do?

M: Right. Right. It was all held back.

D: Okay.

M: Like the old saying back then, uh… “A child could be seen but not heard.”

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D: Yeah.

M: You know, not speaking when they should.

D: Yeah.

M: That type of thing.

D: Okay.

M: They helped me get over that.

D: Okay, yeah. It sounds like, very empowering.

M: Mm-hm.

D: Very- kind of having your own voice.

M: Yeah.

D: Some people would call it that.

M: Yeah, I was able to voice my opinion.

D: Yeah. Yeah.

M: You know, it used to be nobody didn‟t wanna hear what I had to say, but now they take it into consideration.

D: Mm-hm. Can you think of a time where… in the past maybe you wouldn‟t have spoken up, but- but now you- you said something, and- and…

M: Well… a lot of times when I speak up is if I see somebody else getting hurt…

D: Oh, okay. Yeah

M: …and somebody else doing the hurting on that person that shouldn‟t be doing it, I will voice my opinion then…

D: Mm…

M: …even though it‟s not my place to say something to ‟em. But I- if- if I feel the need in order to get ‟em- get the two to talking again or something like that…

D: Yeah.

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M: …I will voice my opinion then.

D: Okay. So like people you know?

M: Yeah. Yup.

D: Okay. Wow.

M: But that‟s how the system has helped me a lot…

D: Mm-hm.

M: …able to speak out.

D: Right. Right. Okay. Are there other things that you‟ve uh… other parts of the system that- that you‟ve found helpful in that area.

M: Okay, like my counselor, the one that just moved almost a year ago, um…

D: Okay.

M: I was- whenever I would come here when there was counseling, I would uh… sit outside in that little area when you- when first come in the door…

D: Mm-hm.

M: …there was a secretary that sat out there. And… I- I wouldn‟t participate and come to (the center we were in) every day. Uh… I would only come here when I had appointments, and I‟d see other people sitting out there where the tables is…

D: Yeah.

M: …when the door was open, but I would not come in and talk to ‟em. I was scared.

D: Okay.

M: And um… I had- had this counselor who was telling me about the different groups here, and she thought I would benefit from ‟em. And it took her… 8 or 9 months for me to finally come to one group.

D: Mm-hm.

M: And when I seen how that group was I started coming every day… until I finally was participating in all the groups and going on field trips with ‟em. And then this other counselor, um… let‟s see three – four years ago. She decided to leave counseling and go work somewhere

340 else, so we gave her a going away party, and the biggest thing for me was speaking in front of people, ‟cause I had a problem.

D: Yeah.

M: I had actually wrote a speech and there was about 15-20 people here.

D: Wow.

M: And I read- I got up and I read the speech in front of everybody and I- in fact, I looked at ‟em, I said, “If each and every one of you have something to say to (her counselor), why don‟t you say it now one at a time. Tell her what you think about her.”

D: Mm-hm.

M: And they all got up one at a time and… I- my counselor told me afterward, she says, “I am surprised that you actually got up in front of everybody…

D: Hm.

M: “…when you talked about how scared you were.” I said, “Well after I got to talking it didn‟t bother me. I- I relaxed.”

D: Mm-hm.

M: And I was able to manage finally talking in front of a bunch of people without being so nervous. And then- like I said, she was a big help. She got me- she said, “Now I can‟t get you to quit talking.” (laughs)

D: (laughs)

M: I used to not talk a lot, like this. But uh… since I had seen her she got me motivated into talking a lot.

D: Right. What was it that- that got you motivated?

M: Her kindness.

D: Oh, okay.

M: Her kindness. Her uh… her um… her what can I say? Her um… willingness to help out…

D: Mm-hm.

M: …and help with the situation, the problem. She helped solve the problem a little bit.

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D: Okay.

M: And it worked and I‟m glad I had her, ‟cause… I didn‟t think I was ever gonna participate here… or have anything to do with anybody here, ‟cause… I didn‟t know at the time everybody here had a mental illness. I didn‟t even know I had one.

D: Mm-hm.

M: Uh… and then… you know, after I thought- I was judging people.

D: Okay.

M: Like you know… like somebody like I said a while ago about the lady who judged me because of this?

D: Yeah.

M: I was judging people or afraid- I was afraid that… I wasn‟t gonna like ‟em or they wasn‟t gonna like me.

D: Okay. Okay.

M: I didn‟t know that until I got to talk to ‟em that I was wrong.

D: Mm-hm.

M: People do, you know, take to you.

D: Mm-hm.

M: And it turned out to be a pretty good thing.

D: Yeah.

M: Real good thing. I mean… I got friends, but nothing like these here… that understand.

D: Yeah. Yeah. So the people you were afraid of talking to became your close friends.

M: Exactly.

D: Wow.

M: And still are. We‟re all like this (crosses her fingers).

D: Yeah. Yeah.

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M: So… this is a good place… mental health system‟s a l- really great. As long as they keep it up and not um… uh, what do you call it? When it‟s time to vote, you can vote for the issue.

D: Right. The… what it‟s called – levy.

M: The levy.

D: Yeah.

M: Yeah. Instead of turning it down, vote for it, because it‟s really needed.

D: Yeah. Yeah, not enough people realize that, I think.

M: Right. I know they- well- soon as it‟s near voting time we get out there. We send out papers telling everybody to vote.

D: Yeah. Oh, I see ‟em. I see the signs and everything out there. Yeah.

M: Yeah. It- it‟s great. It‟s great to have it. I‟m glad there‟s something like this out there…

D: Mm-hm.

M: …‟cause if it wasn‟t for the (center we were in) we would have no place to hang out…

D: Mm-hm.

M: …and talk.

D: Well- it sounds like the counseling helped you… um… get to talking to people, but also having- having people here who were accepting of you did too.

M: Yeah. Yeah it did.

D: Seems like that- that was a big- a big part of it.

M: Yeah, it is. Um… otherwise I‟d still be stuck in my own little shell- I broke the shell is what I did.

D: Right. Right, yeah. Yeah.

M: I was in this real tight shell that I didn‟t want nobody get to me…

D: Mm-hm.

M: …or that nobody bother me, or get close to anybody.

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D: Mm-hm.

M: ‟Cause I was ‟fraid if I did, that would be it. You know, then it would be over with. No more, nobody.

D: Yeah.

M: Well… once I broke that shell, or she broke it for me… everything was okay. I found out everything‟s alright.

D: Mm-hm. Yeah. That‟s great.

M: Yeah. It is. Like, I thank God every day that there‟s a place like this.

D: Mm-hm.

M: I mean, I‟m not a religious person or- I- I haven‟t been to church in years, but I still pray every night… for- thanking Him for having a place like this..

D: Mm…

M: …friends to go see, and stuff like that.

D: Mm-hm. Mm-hm. Was th- was there anything else you wanted to say about feeling empowered because of…

M: N- not really.

D: …the mental health system. Okay.

M: That‟s about all I can think of.

D: Alright. And then the next question is just the opposite. Um, have there been ways where, um… your experiences in the mental health system made you feel more disempowered in your life? Or- and by that I mean, you know, you felt like your voice was- was stifled or you weren‟t able to express it, or you weren‟t able to make your own decisions or have that choice like you were saying.

M: Nope, there‟s nothing like that, that‟s bothered me or I had said. Everything‟s been good.

D: Mm-hm.

M: There was never a time that it hasn‟t been good. (inaudible word)…

D: Okay. Before you mentioned something about, um… what was it? Oh, about a- the doctor not asking you…

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M: Oh. When I first started seeing him…

D: Yeah.

M: …I felt l- it felt like he was uh… talking at me instead of to me, and then…

D: Okay.

M: …just wanting to put you on every kind of pill there possibly is, without finding out if you really need it. But it took me some time to get to really know him to understand that he was actually trying to help.

D: Okay. Okay.

M: That- that‟s the only thing I‟ve ever had a- an- well it wasn‟t a problem, problem… but I had a situation with.

D: Okay. It sounds like it was because you really didn‟t know him that well at first.

M: Exactly. That‟s all- that‟s all it was. I had to get to know him. ‟Cause… the first counselor I had one- it was time for me to go back to see the doctor… I refused to go back. That‟s how scared I was of him. She had to finally talk-

D: Oh, okay.

M: I had the arms of the chairs- I had my hands gripped like this (clenches fists). She said my knuckles turned white.

D: Mm-hm.

M: That‟s how scared I was going back there to see him. She said, “I‟m gonna be with you.” I says, “Okay, as long as you‟re with me.”

D: Okay.

M: That‟s how scared I was of him, but after I got to know him, everything‟s okay.

D: Right. Did he- was he talking less at you after you got to know him? Or…

M: Yeah. I hadn‟t had my eyes opened all the way to see that he was actually talking to me…

D: Okay. He- it was scary, yeah. Yeah, yeah.

M: …yeah. Yeah. Like that.

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D: Okay.

M: Now he‟s been good so far. I haven‟t had no problems with him.

D: Mm-hm.

M: No problems with my counselors or anything like that. Only problem I actually had was keeping my appointment. Sometimes I would forget until it was too late…

D: Okay.

M: …and had to reschedule. Now if you miss an appointment like that, you have to pay ten dollars because they could‟ve had somebody else in that appointment time. That makes them lose money…

D: Mm…

M: …when you miss an appointment.

D: That‟s right. Yeah. Yeah.

M: So… now I experienced that back in March. I had to end up paying… total of forty dollars, thirty for myself and ten for my son. So I made myself a promise. I‟m not gonna pay that money again…

D: Yeah, it‟s not worth it.

M: …and I been keeping my appointments so far. So see… that‟s a wake-up call.

D: Mm-hm.

M: Because they could‟ve used that appointment time for somebody else.

D: Right, right.

M: And… they didn‟t get to.

D: Okay.

M: So… everything was, you know… I got no negative thoughts about ‟em whatsoever.

D: Well, it sounds like, um… what- like what you were saying earlier, like if you have a problem with your medication or something, you can tell ‟em and he‟s gonna…

M: Yeah.

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D: …he‟s gonna respond. He‟s- he‟s gonna do something about it.

M: Like for instance, he was gonna put me on another pill and I told him, I said, “Don‟t you have a shot you can give me instead of putting me on another pill?” I‟m on enough pills as it is…

D: Yeah.

M: …from him plus from my family doctor. I take- I got a- you might as well call it a drug store, that‟s how many pills I got.

D: Mm-hm. Mm-hm.

M: Um… and he told me about this Risperderal (Risperdal) C – I can‟t pronounce it, C-O-N-S- T-A… consta or something like that.

D: Okay, yeah.

M: Uh, he told me about that shot, so I- needles don‟t bother me. I‟d rather have a shot than to take a pill.

D: What is it, like a once a month or something like that?

M: Every two weeks.

D: Every two weeks. Yeah. Convenient, I guess.

M: And in fact I had it today.

D: Okay.

M: And… I go back in two more weeks for another one. I‟m gonna ask them when I see ‟em at the end of this month if there‟s another shot that he can give me, ‟cause I know he‟s gonna put me on another pill when I tell him how I been feeling, how irritable I been feeling.

D: Mm-hm.

M: I‟m gonna tell him- uh, ask him if there‟s a shot- another shot he can give me. ‟Cause I‟d rather- like I said, I‟d rather take shots. I can‟t give shots to myself, and like I said- I mean, I‟m diabetic and I don‟t- I take pills.

D: Mm-hm.

M: I don‟t take insulin, and if they- is the ti- er, if there is a time that I end up taking insulin shot, I can‟t give ‟em to myself. I‟d have to have somebody do it for me.

D: Okay.

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M: I can‟t po- I can‟t poke myself with no needle (slight laugh).

D: Yeah, I don‟t think I could either. I don‟t like needles (laughs).

M: (laughs). Everything else has been okay.

D: Okay. Alright, well… here‟s the part where you get to be the expert even more (slight laugh). This is the last part.

M: (slight laugh)

D: Um… the question- one of my questions here is, in what ways can the mental health system be improved to better meet your needs or to meet the needs of other people who utilize mental health services. What…

M: Uh…

D: …what do mental health professionals need to know about making things better?

M: Um… get more help available to the people who need it now, that doesn‟t have a counselor or a doctor to see.

D: Okay. So get- g- getting… being able to- to get people help who need it.

M: Yeah, they need the funding to do that, but then…

D: Yeah, that‟s right.

M: …they need, uh… to see if they can get in more people to help out.

D: Okay.

M: „Cause… I know they get crowded. They get overwhelmed…

D: Right.

M: …and they need somebody else to help out.

D: Mm-hm.

M: That‟s the only thing I can think of.

D: That‟s the main thing for you?

M: Yeah.

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D: Okay. And specifically, um… how do you think mental health professionals, um… can work to- to make people feel empowered, um… that receive mental health system, like the kinds of things you were talking about?

M: Uh… first, you know, keep up doing what they‟re doing, and- and… and enable people to stand up for themselves and talk when they need to.

D: Okay. So just really letting them… tell them that they can stand up for themselves and…

M: Right…

D: …letting them express their opinion, that kind of thing?

M: …so that their voice is allowed to be heard, just like anybody else‟s.

D: Mm-hm. Is there anything specifically that helps people with that- in that area- that a- that a counselor or a doctor could do… to help somebody in that area?

M: Just give ‟em- tell ‟em- give ‟em the chance to speak without uh, anxiety setting in, or you know, how calm they can be when they speak… stuff like that.

D: Okay. Alright. And then the final thing is um… what kinds of things do you think, uh… mental health professionals can do to help eliminate stigma and discrimination, um… toward people who experience, uh- psychological problems, or…

M: Uh… they can give out more information if they got it and let everybody know that um… mental health people are just like everybody else.

D: Okay. So information about who they are…

M: Mm-hm.

D: …that- that they‟re people too.

M: That we‟re not MR/DD type people.

D: Mm-hm.

M: We‟re just like everybody else… able to be heard, voice… voice their opinion, be able to listen to, stuff like that.

D: Okay. Okay. So educating people, and-

M: Mm-hm.

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D: …getting information…

M: More (word unclear: advertises?). Yeah.

D: Mm-hm.

M: Exactly.

D: Okay. So, you would say that would be the main thing?

M: Mm-hm.

D: Alright. Any other advice or tips you would have for…

M: (laughs) Not that I can think of.

D: Okay.

M: No, I don‟t have any other things.

D: Well that‟s all my questions. Do you have anything else you wanted to add, or anything that you feel like I left out, or…

M: No, you didn‟t leave nothing out. I- I said just about everything I- you know, I could.

D: Alright. Well, thank you for agreeing to talk to me today.

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Appendix K: I Poems (Participant 3) (Pages 2-3): I‟d like to know

I didn‟t I couldn‟t I wanted

I would‟ve liked to know I would like to I have no idea

I- I- I‟m sure I guess I don‟t know if I got heritage I‟m really interested I wish that I could I wish I could

I can‟t I don‟t know I used to want I can‟t

(Pages 4-6): I always thought I did something wrong I got into counseling I started counseling I- I used to think “What did I do wrong”

I had him I had a uncle I was seven I never I was I could remember I was I was almost I was

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I took up for myself I was I first started talking back I wouldn‟t allow it I meant business I was finally able to I wouldn‟t let him

(Page 10): I see him I think back I want to hurt him

I don‟t I could I would‟ve

I try I have flashbacks I had I have vivid flashbacks

(Pages 11-13): I started going I saw the counselor I don‟t I get I just I just

I explained I‟ve been in counseling I‟ve been in counseling

I got I had I picked

I got I‟m still I‟ve had

I just explained I was I needed to talk

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(Pages 15-16): I kept having this bad dream I wouldn‟t I‟d look I would see

I couldn‟t figure out I walked I decided I walked I seen

I- I can‟t I don‟t know I had faced that fear I was okay I didn‟t have the dream no more

(Pages 18-20): I was hearing these voices I described it I said I was feeling I would start talking I needed something I was already I‟ve heard I just

I‟ll… I can see things I hear things I was I said I said I smell a strong odor I don‟t I said I sure do I don‟t know I was thinking I smelt it I can smell stuff I said

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I first started counseling I first seen a doctor I had a situation I seen this little boy I guess I told the doctor I was like this I kept looking I said I see them I said I said I talk about it I said I told you I haven‟t seen that in years

(Pages 21-22): I drew a picture I could see I‟m looking I went I could have swore I seen him I walked I said I want I‟m not gonna I says I was talking I need I‟m not gonna go

I said I just wanted I seen it I forgot

I was just hallucinating I lost count I‟ve been in I‟ve lost count I feel safe

(Pages 30-32): I know

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I‟m able to tell somebody “I don‟t want to do that”

I used to feel If I said “no” I felt real guilty I don‟t feel guilty If I need to say “no”

I had the right I mean I didn‟t I did I expressed I felt I had a right I don‟t like this I could speak I want to I didn‟t feel like it I didn‟t want to I didn‟t have to I had- I got to make my own choices

I said I felt good I wasn‟t never taught to speak up I was able to voice my opinion I had to say I speak up I see I will voice my opinion

(Page 40): I been feeling I been feeling I‟m gonna tell him I‟d rather I said I‟d rather I can‟t I said I mean I‟m diabetic I don‟t

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I take pills

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Appendix L: Content Poems (Participant 3) In the hospital (Pages 14-23) In the hospital In the psych ward I‟ve been in the hospital quite a few times I was in the hospital My first experience in the hospital My third or fourth time in the hospital I got probated when I was in the hospital I was in the hospital

Hearing Voices (Pages 18-19): I was hearing these voices Here‟s the child‟s voice Here‟s the female voice Right in the middle is the male voice

The male voice was more growly- grouchy It was telling me to kill each member of my family Just to see what it was like killing somebody That really scared me

Them voices It‟s been about a month or two since I‟ve heard any voices

Medication (Pages 21-40): It was my third or fourth time in the hospital They had me on like Ativans at the time I was just hallucinating I get real tensed and irritated for no reason

I‟m on… Seroquel, Trazidone, Lamictal, Topamax Risperdal Consta – that‟s a shot Consta or something like that

He was gonna put me on another pill “Don‟t you have a shot you can give me Instead of putting me on another pill?” I‟m on enough pills as it is You might as well call it a drug store That‟s how many pills I got

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I‟d rather have a shot than to take a pill I know he‟s gonna put me on another pill When I tell him how I been feeling How irritable I been feeling

Speaking up/Voicing her opinion (Pages 31- 32): They told me I could speak if I want to It was okay for me to speak up I wasn‟t never taught to speak up Not speaking

I was able to voice my opinion It used to be nobody didn‟t wanna hear what I had to say Now they take it into consideration I will voice my opinion then Even though it‟s not my place to say something I will voice my opinion then

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