BUILDING BRIDGES OF HOPE: A SELF DETERMINATION & HUMAN RIGHTS

ORIENTED CURRICULUM FOR PARENTS OF TRANSITION AGE YOUTH WHO

EXPERIENCE EXTREME STATES, HEAR VOICES AND/OR EXPERIENCE

EXTREME EMOTIONAL DISTRESS

By

Danielle Aubin

A project presented to

The Faculty of Humboldt State University

In Partial Fulfillment of the Requirements of the Degree of

Master of Social Work

Committee Membership

Dr. Jen Maguire, Committee Chair

Sheri Johnson, MSW, Committee Member

Daria Sievers, MSW, LCSW, Community Partner

Geneva Shaw, MSW, Graduate Coordinator

May 2016 Abstract

BUILDING BRIDGES OF HOPE: A SELF DETERMINATION & HUMAN RIGHTS ORIENTED CURRICULUM FOR PARENTS OF TRANSITION AGE YOUTH WHO EXPERIENCE EXTREME STATES, HEAR VOICES AND/OR EXPERIENCE EXTREME EMOTIONAL DISTRESS

Danielle Aubin

Parents of transition age youth (TAY) who hear voices and/or experience extreme

states can be faced with the socially accepted idea that their child is “disabled for life.”

Many of these parents believe this idea, and lose hope of recovery for their child who

may struggle with what are commonly referred to as mental disorders. When the belief in

recovery and wellness is minimized, parents and their loved ones begin to live in what

Pat Deegan calls “a winter of despair” (Deegan, 1992).

Parents gather bi-weekly to attend a support group I facilitate. As a Mental Health

Rehabilitation Specialist facilitating this group for almost one year, it became apparent to

me that living in a ‘winter of despair’ and having a pessimistic view of prognosis can be a common experience for many families and youth who have been labeled as “mentally ill.” Many parents I encountered appeared to live with the perception that there was little

tangible hope for recovery and wellness from severe mental health issues.

The purpose of this project is to interview experts in the mental health field and

conduct an extensive review of the literature and other media in order to create a curriculum grounded in beliefs which support the human ability to recover and

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regenerate. The curriculum is based on information gathered from individuals who have and/or continue to experience extreme states, emotional distress and hearing voices.

The guiding principles of the curriculum are supported by literature and resources that are recovery based with the goal of creating hope for the future, which Pat Deegan (1992) calls a “conspiracy of hope.” The curriculum is developed to help parents understand how to better support their children or loved ones who experience extreme states and/or hear voices, and that many people labeled as “mentally ill” are able to lead happy and fulfilling lives post-diagnosis. The curriculum is aimed at creating a healing environment to help parents become supportive advocates working together with their loved one toward a better future.

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Acknowledgements

There are so many people who have been directly and indirectly responsible for my growth as a human being and as a Master of Social Work student. First of all, I want to thank the young people I have worked with throughout the years as a mental health worker. They and their families are the true inspiration behind this master’s project.

Thank you to Caroline Mazel White who graciously allowed me to interview her and gently blew my mind with her lived wisdom and critique of my own blindness and pathologizing viewpoints. I want to take a moment of pause and silence to honor all the struggles that we as human beings face and the stigma and confusion surrounding mental health for us as a species. It is my deepest hope that all of us can work together to come up with a decolonized, empowerment based mental health system that serves people with compassion and respect.

I want to thank the teachers who have helped me along this path: Dr. Yellow Bird,

Jamie Jensen, ABD, Dr. Jen Maguire, Yatiel Owens, MSW, Sheri Johnson, MSW and

Daria Sievers, MSW, LCSW. All of you have offered me the necessary tools to increase my capability for reflection, which has helped me grow into the activist, social worker and person that I am today, thank you. To my family, my parents, to Umugabo Wanjye

Kunda – Ndagukunda cyane! and to all my friends who have supported me, thank you.

Thank you Sunny Hills Services for almost three years of constant learning and growth. I want to thank all the countries that have let me into their borders to grow and learn.

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Without stepping out of my comfort zone and exploring other lands, I would not have had

the courage to pursue Social Work and learn how to take steps to decolonize my mind.

Thank you to all the people, animals, plants and minerals who contributed to the computer I used to write my project, to the shelter over my head and the food in my belly

that made all of the work I have done possible.

And last but not least, thank you and congratulations to all the members of my

cohort, we did it!

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Table of Contents Abstract ...... ii

Acknowledgements ...... iv

Introduction ...... 1

MSW Student Positionality ...... 2

Key Terms ...... 3

My History and Experience in the Mental Health System ...... 6

Stigmatizing Language ...... 11

History of Hope/Hopelessness (Euro-Western) ...... 14

Parents of TAY Who Experience Extreme States, Hear Voices and/or Experience Extreme

Emotional istress ...... 18

Family burden...... 18

The impact and role of stigma...... 20

The role of hope in families...... 21

Transition Age Youth (TAY) and Extreme Experiences ...... 23

The Need for a Support Group Curriculum that Promotes Self-determination, Human Rights

and Hope ...... 25

Methods...... 26

Bridges of Hope Curriculum Development ...... 26

Theoretical Approach ...... 27

Description of Interview ...... 28

Interview Methods ...... 30

Results ...... 32 vi

Interview of Expert ...... 32

Description of Curriculum ...... 33

Project outcomes...... 33

Conclusion ...... 36

Curriculum Development ...... 36

Implications for Social Work Practice ...... 43

Recommendations for Future Work ...... 45

References ...... 46

Appendix ...... 55

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1

Introduction

There are thousands of definitions and felt experiences of what extreme

experiences/states, emotional distress and hearing voices mean to individuals as well as

to communities of people around the world. Perceptions regarding hearing voices and

what extreme experiences mean to people ranges from pathological viewpoints to

viewpoints that see hearing voices as a shamanic ability. Although the American mental

health field is becoming more inclusive of voices from people who have had first-hand knowledge of extreme states and hearing voices as evidenced by Hearing Voices groups

located throughout the country, this country still has a long way to go. We are still in the

beginning stages of reducing stigma and creating a more inclusive and tolerant

environment where hearing voices is not necessarily viewed as pathology and where

diverse perspectives are honored and included.

It is worth noting that psychiatry practiced in the United States is based on a Euro-

Western Medical framework which asserts “the medical model of mental illness treats

mental disorders in the same way as a broken arm, i.e. there is thought to be a physical

cause” (The medical model, n.d., para 1). Alternatively other viewpoints offer something

different. For example a Dagara Shaman states “what those in the West view as mental

illness, the Dagara people regard as good news from the other world” (Marohn, 2003, p.

178).

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MSW Student Positionality

For the purpose of this project, it is important to acknowledge that I was born and

raised in a Euro-Western dominant culture in the United States. I identify as a woman of

European-Jewish descent originating from low-income working class background. I am

27 years old, married and consider myself cisgender and heterosexual. I am currently an

MSW student and work as mental health professional and Adult Protective Services

worker in Marin County, one of the richest counties in America. I received my bachelor’s

degree in psychology from Dominican University in 2011 and I have been trained in

various therapeutic techniques (e.g. CBT, motivational interviewing, etc). I have not had

an experience of hearing voices.

My understanding and experience of mental health care has come from the Euro-

Western point of view that was taught to me in school and in the mental healthcare

settings in which I have worked. The Euro-Western framework, including the anti-

psychiatry movement and other mental health activist movements reported on in this

project, generally find their origins in Euro-Western dominated systems of thought.

However, there are many views that have been silenced and overlooked in the literature

that tell a different story of humanity and the human mind. As much as possible, Non-

Euro-Western viewpoints will be included in guiding this project and this paper.

My positionality invariably has an epistemically significant impact on the claims I

make throughout this paper. On one hand I am a person of European descent and I have been trained mostly in Euro-Western research methodologies. On the other, I have spent

3.5 years in a Master of Social Work program with a special focus on indigenous ways of

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knowing. In the book Indigenous Research Methods, Chilisa explains, that “The researcher has to be self-questioning to reflect on how factors such as age, gender, social class, ethnicity, or race may limit holistic understanding of the issues in the study”

(Chilisa, 2012, p. 181). Euro-Western based research has a history of suppressing expression methods that clash with their worldview (Chilisa, 2012). Although my research is partially based on my Euro-Western viewpoints, I seek to not suppress other viewpoints and include indigenous as well as other alternative ways of knowing.

Linda Alcoff writes in the article “The Problem Of Speaking for Others” that the

“Location and positionality should not be conceived as one-dimensional or static, but as multiple and with varying degrees of mobility" (Alcoff, 1991, p. 11). Alcoff stresses “… that the practice of speaking for others is often born of a desire for mastery, to privilege oneself as the one who more correctly understands the truth about another's situation..."

(Alcoff, 2000, p. 22). In this paper and project I aim acknowledge the dangers of speaking for others which may cause an expansion of one’s own privilege and authority

and instead use speaking to and with in order to avoid these dangers as much as possible.

Alcoff reminds us that “There can be no complete or definitive solution to the problem of

speaking ofr others, but there is a possibility that its dangers can be decreased" (Alcoff,

1991, p. 17).

Key Terms

Due to the concept of mental illness being controversial with a tendency to be highly stigmatizing, the label “mental illness” is used sparingly in this paper to describe ones

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experience of extreme and altered states. This is an attempt to reduce an assumption of

pathology that is implied with the wording mental illness. Psychiatrist Thomas Szasz

(2000) was one who challenged the dominant view of extreme mental experiences as inherently pathological and on parity with physiological pathology. Szasz (2000) stated

that since the “…mind is not a material object … it can be diseased only in a metaphorical sense“ (Szasz, 2000, para 7). Following this logic, stigma based on a

metaphorical understanding of “mental disease” (defined as patterns of personal conduct,

unwanted by the self or others), does not appear to be helpful in truly understanding how

a person can improve their life and/or learn how to live a fulfilling life as one who

experiences extreme states or hears voices.

Malidoma Patrice Somé, PhD., a West African author, teacher and representative of his village in Burkina Faso came to the western world to offer the wisdom of the African ancestors (“Meet Dr. Malidoma Some´, PhD.”, n.d.). On his first trip to the United States when Dr. Somé witnessed people locked away in mental wards he proclaimed, “So this is

how the healers who are attempting to be born are treated in this culture. What a loss!

What a loss that a person who is finally being aligned with a power from the other world

is just being wasted” (Marohn, 2003, p. 189).

The Dagara people view what the Euro-Western world terms “mental illness” as a situation where “… spirits are drawn to people whose senses have not been anesthetized”

(Marohn, 2003, p.178). Dr. Somé explains that the western world with it’s “… frenetic pace, the bombardment of the senses, and the violent energy that characterize Western culture can overwhelm sensitive people” (Marohn, 2003, p. 178). Overwhelmed sensitive

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people who are dealing with spirits drawn to them without the tools and ability to handle it because of lack of guidance exemplifies one of the various ways that mental phenomena can be understood. In order to truly understand how best to serve people who experience extreme states and/or hear voices, we must turn to the people who experience it firsthand. Extreme experiences and hearing voices may have explanations from a variety of cultures and spiritual teachings that can be helpful to the experiencer. Since there are a variety of ways to view hearing voices and/or extreme experiences, those who have these experiences will be referred to as peers, voice hearers or people with lived experience. These labels are meant to not stigmatize the person and to not assume that what is happening for that person is an illness.

The peer movement is referred to throughout this paper and is defined as services and advocacy that are “… delivered by individuals who have common life experiences with the people they are serving” (Peer Support and Social Inclusion, n.d., para 1). Leah Harris

(2009), one who considers herself a “survivor” of the psychiatric system, is an example of someone I would consider a “peer.” She shares in her article, “Speaking With The

“Enemy” And Speaking Of Recovery”, that due to her experiences in the mental health system she has, “…a deep, abiding, built-in distrust of all providers” (Harris, 2009, para

5). Harris argues that the mental health system has many powers that, when used coercively, can deny basic human rights to individuals (Harris, 2009). The concept of human rights is visited multiple times throughout this paper and project and ultimately serves as the backbone of the Bridges of Hope Curriculum.

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Harris expands on the idea of human rights in relation to forced treatments when she

argues “How can you begin to recover from anything when you are being drugged,

institutionalized, or electroshocked against your will?” (Harris, 2009, para 12). She goes

on to state that although the recovery movement has many positive aspects to such as

focusing on self-determination, ultimately “…recovery without human rights is

essentially meaningless” (Harris, 2009, para 15). The mental health Recovery Model has

informed this paper significantly. The Recovery Model is defined as “... a service

environment [that is] designed [so] consumers have primary control over decisions about

their own care” (NASW Practice Snapshot: The Transformation of the Mental Health

System, n.d.). Recovery is defined as “... an individual’s journey of healing and transformation to live a meaningful life in a community of his or her choice while striving to achieve maximum human potential” (NASW Practice Snapshot: The

Transformation of the Mental Health System, n.d., what does recovery mean, para 1).

My History and Experience in the Mental Health System

As long as I can remember I have been a seeker of truth and wisdom, spending countless hours reading works from Jiddu Krishnamurti, Buddha, Gandhi, Socrates,

Laozi, Don Miguel Ruiz, and many other visionaries in an attempt to deepen my

understanding of myself and others. From a young age, the experience of my inner and

outer worlds have been fluid and beyond description. I was drawn to psychology through

self-exploration and bewilderment regarding my personal experiences. Relatives like my

grandfather who was hospitalized throughout his life and administered various treatments

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including electroconvulsive therapy have spiked my interest in stigma, diagnoses,

prognosis and hope on a personal and professional level.

I began working in the field of mental health six years ago as an Intake Coordinator

for an eating disorder treatment center. Since that time, I have worked as a Certified

Sexual Assault Counselor, Behavioral Science Intern, human rights Commissioner,

Mental Health Rehabilitation Specialist, Suicide Prevention Hotline Counselor, and as an

Adult Protective Services Worker. As I gained experience I observed that the overarching values and ideas inherent in the system known as “mental health care” did not always fit with my personal experience or my own concept of what it means to be mentally healthy.

Through ongoing personal exploration and inquiry into the mental health industry I have found that perceptions of “mental illness/wellness” are inextricably linked to our personal and collective philosophy, as well as spirituality and educational paradigms that are reinforced by dominant cultural paradigms. The system, which reinforces dominant cultural beliefs about mental health, is well established and there is a considerable amount of money invested in the accepted medical model of “mental illness,” which

purports that psychological states are the result of physical abnormalities. This system

legitimizes the acceptance of the idea that there are “mental illnesses” and that, at times, patients presenting with symptoms of these “illnesses” may need to be coerced into treatment for their own good.

The medicalization of mental distress or deviant behavior has spawned the creation of a large treatment industrial complex and an economy that accounts for billions of dollars

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annually. According to Greenberg (2013) at the New Yorker, “…sales of psychiatric

drugs amounted to more than seventy billion dollars in 2010” (Greenberg, 2013, para 1).

The disease paradigm, which supports the pharmaceutical industry, is vital to the life of

the psychiatric system as we know it. Greenberg (2013) challenges the serotonin-

imbalance theory and states that the brain is an “… elusive target for drugs” (Greenberg,

2013, para 12).

Proving or disproving the validity of the biological basis of mental illness is beyond

the scope of this paper. However, it is worth noting that characterizing depression in

biomedical terms, according to researchers Kemp, Lickel and Deacon (2014) may worsen

perceptions of dangerousness and unpredictability. This may be due to attributing a

mental disorder to a seemingly uncontrollable cause. The researchers go on to say that the

consequence of essentialist thinking regarding a biological view of mental illness is prognostic pessimism (Kemp, Lickel & Deacon, 2014). Kemp, Lickel and Deacon (2014) conducted a study and found that the chemical imbalance theory did not reduce self-

blame or stigma. In fact, they noted that it “... activates a host of negative beliefs with the

potential to worsen the course of depression and attenuate response to treatment...”

(Kemp, Lickel & Deacon, 2014, p. 50).

Although the chemical imbalance theory of mental illness can reduce self-blame, it

has been insufficient in addressing how best to help someone that is experiencing

extreme distress from hearing voices and/other experiencing extreme states (Kemp,

Lickel & Deacon, 2014). In 2008 Stanislav Grof, one of the founders of transpersonal

psychology asserted that “… mainstream psychiatrists do not differentiate psychospiritual

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crises, or even episodes of uncomplicated mystical experiences, from serious mental

diseases, because of their narrow conceptual framework” (Grof, 2008, para 2). The narrow conceptual framework employed by the medical model generally results in

hospitalization in a locked in a psychiatric facility and treatment with

psychopharmacueticals for a person experiencing what Grof may classify as a

psychospiritual crisis. Instead of using the term “mental break”, Grof created the term

“spiritual emergency” which “…alludes to their positive potential. In English, this term is a play on words reflecting the similarity between the words "emergency" (a suddenly appearing acute crisis) and "emergence" (surfacing or rising)” (Grof, 2008, para 4). Just as Szasz (2000) explained in “Mental Disorders Are Not Diseases”, mental disorders and/or psychospiritual crises cannot be measured by a blood test or EKG. Grof explains

“… the experiences that constitute psychospiritual crises clearly are not artificial products of aberrant pathophysiological processes in the brain, but manifestations of the deeper levels of the psyche” (Grof, 2008, Diagnosis of spiritual emergency, para 8).

In Maastricht, the Netherlands, over the past twenty years psychiatrist Marius Romme and researcher Sandra Escher have developed a new approach to working with people who hear voices called the Maastricht Approach. This method advocates for the acceptance of the hearing voices experience (Moskowitz, 2008, para 1). Romme and

Escher’s model see voices “… as meaningful human phenomena originating in the

personal history of the individual who was overwhelmed by emotions in threatening

circumstances.” (Moskowitz, 2008, Summary para 1)

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In the midst of uncertainty regarding the genesis of mental distress and/or extreme

states/experiences, as a professional I find myself working in a mental health world dominated by medical definitions of mental phenomena that appear to serve the interests of those who ascribe to the dominant paradigm and marginalizes those who have a different story to tell. I have yet to hear a professional speak of spiritual emergencies or talk about the shamanic potential of those who experience extreme states. The experience of hearing voices is generally labeled as “psychosis” and there is not much inquiry into accepting the experience as something normal or wanted. Alternative explanations and viewpoints of service users/consumers are rarely heard unless these views are adherent to the medical model system of thought.

In January 2015, after 5 years in the mental health field, I began facilitating a parent support group for parents of Transition Age Youth (TAY) who experience extreme states and/or hear voices at a local non-profit mental health agency. While facilitating this group I discovered an unspoken assumption among these parents that their children diagnosed with psychiatric disorders such as Schizophrenia, Bipolar Disorder and psychosis were headed down a road full of prescribed medications with horrific side

effects, group homes, hospitalizations, self-medication with intoxicating illegal

substances, and failed relationships with peers and family. After leading this support

group for about one year, a pervasive belief underlying belief emerged: that healing and

full recovery for young people diagnosed with mental health diagnoses such as

“schizophrenia” and “bipolar disorder” was rare if not impossible. As the group

facilitator I was faced with supporting parents who had been informed by the medical

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model paradigm of mental health that their children had a poor prognosis. I was also faced with working within a mental health system that views a person’s diagnosis as what

Pat Deegan (2004) refers to as the core identifying feature of their social identity or

“master status.” Hope for young people to recover and thrive post-diagnosis seemed elusive in this context and catapulted me into a journey to address this underlying belief. I searched the literature for information on mental health history, lived experiences from psychiatric survivors, alternative viewpoints from varied cultures and the anti-psychiatry movement. These discoveries led me to create a curriculum focused on hope, human rights and self-determination, offering way of viewing mental health that diverged from the medical model.

Stigmatizing Language

Throughout this paper I have chosen to refrain from making the assumption that extreme experiences and/or hearing voices are either negative or positive occurrences in someone’s life. This conscious choice to avoid qualifying if someone’s subjective experience is negative or positive is not new. Throughout the entire history of psychiatry, there have been many critics of the psychiatric system. Psychiatry critics tend to question three things, “the medicalization of madness; the existence of mental illness; and the power of psychiatrists to detain and treat certain individuals” (Furnham, 2015, para 5).

Many people who experience extreme states and/or hear voices value the experience and many assert that hearing voices has been part of the human experience throughout history. Harris (2009) explained that her “… experiences of madness, no matter how

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frightening they can be at times, are intrinsic to my being and I wouldn’t ever wish them

away” (Harris, 2009, para 9).

For the purposes of this paper, I will at times refer to diagnoses in the Diagnostic and

Statistical Manual of Mental Disorders (DSM) since this manual is used to diagnose all

mental health disorders in the United States at the time of this writing. The DSM is a very

powerful diagnostic tool that is currently the guiding literature for diagnosing and categorizing people in order to “treat them” in the United States and many other places in

the world. Although the DSM is widely used by mental health professionals in the

United States, according to a study in the Journal of Humanistic Psychology, it was found that many psychologists do not believe that the DSM is scientifically valid (Wipond,

2015). That study found that out of 104 psychologists surveyed, the psychologists’ perspectives were significantly more negative than neutral (Wipond, 2015). The researchers remarked that although many of the psychologists found the DSM flawed in multiple aspects, 90% of the psychologists continued to use the DSM to collect insurance payments (Wipond, 2015).

The concept of recovery was explored extensively in order to create this curriculum.

In the film Take These Broken Wings -- Recovery From Schizophrenia Without

Medication when the general population is asked about the ability to recovery from so- called “mental illness” or “schizophrenia” most people said, “not without medication for life” and many people believed the “illness” could only be managed throughout the lifespan (Mackler, 2014). A local psychologist in the Bay Area, Paris Williams, describes in his doctoral dissertation, “During much of the past century, there has been a general

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assumption ... that schizophrenia and other long-term psychotic disorders are

degenerative and offer very little hope of full recovery” (Williams, 2011, p. 1). Williams

(2011) goes on to point out that recovery is “surprisingly common” and that some people

may recover beyond their original level of pre-episodic functioning. Kruger (2000) found

that longitudinal studies have shown recovery rates for the diagnosis of “schizophrenia”

are 65% or higher (Kruger, 2000). Although studies show recovery rates of individuals

diagnosed with “schizophrenia” in the clinical population as well as the non-clinical general population, it is generally accepted that people diagnosed with schizophrenia or

other mental disorders have no hope of recovery and will always deteriorate (Kruger,

2000).

Simply believing in recovery will not create a more helpful mental health system.

Harris (2009) describes concerns with an orientation toward recovery adopted by mental health professionals who may “… jump on the hot and trendy recovery bandwagon but twist it to suit their own purposes, skipping over “self-determination” finding a way to dictate “recovery” to the “patient””(Harris, 2009, para 8). Harris (2009) reminds us that not all people wish to recover or even agree with the concept of “mental illness.” One examplee of a profession that challenges psychiatric diagnoses is Szasz. Szasz (2000) asserts that as “… long as there are no objective, physico-chemical observations shown to be causally related to depression and schizophrenia, the claim that they are brain diseases is unsubstantiated“ (Szasz, 2000, Mental diseases are behaviors, para 6).

With so many differing views and critiques regarding the existence of “mental illness”, it is imperative that the individuals who experience extreme states and/or hear

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voices be consulted in the creation and development of any curriculum pertaining to their

own mental health care. This is consistent with the Recovery Model which asserts “…if individuals with mental illnesses have greater control and choice in their treatment, they will be able to take increased control and initiative in their lives” (NASW Practice

Snapshot: The Transformation of the Mental Health System, n.d., para 1). Not only is the consumer’s participation and leadership necessary to craft truly responsive mental health tools and curriculum, it is their human right to be involved in such projects.

History of Hope/Hopelessness (Euro-Western)

Although people who perceive non-consensus reality have been documented throughout the ages, schizphrenia was first discovered relatively recently by a man named Emil Kraepelin in the 1800’s (Kruger, 2000). Kraeplin named a condition he found dementia praecox due to "... being literally out of ones' mind (demented) and the early or precocious (praecox) onset of the disease" (Kruger, 2000, p. 29). Kraeplin basically believed that the disease led to an inevitable downward course and someone who had schizophrenia, or dementia praecox as he called it, would lead a helpless and hopeless life (Kruger, 2000). Eugen Bleuler was the actual person who coined the term schizophrenia, which literally means divided mind. He, like Kraeplin, also believed that recovery was not possible for people diagnosed with schizophrenia (Kruger, 2000). A researcher in 2000 named Kruger stated that, from reviewing the history of medical definitions of schizophrenia, it is clear that the diagnosis of schizophrenia was developed to exclude anyone who recovers or improves (Kruger, 2000). Kruger even found that if a

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person with dementia praecox “… improved, then Kraepelin routinely considered the

patient to have been originally misdiagnosed…” (Kruger, 2000, p. 30). Kruger (2000)

reviewed five long term studies of people living with schizophrenia and found that after

two to three decades out of a total of 1,300 people, over 2 thirds were found to have

considerably improved or fully recovered.

Kruger (2000) found that most people diagnosed with “schizophrenia” experience

considerable recovery and improvement. This seems to be a different picture than the one painted by modern researchers Grover, Pradyumma and Chakrabarti (2015) who state

“schizophrenia is perhaps the most dramatic and tragic manifestation of mental illness known to mankind” (Grover, Pradyumma and Chakrabarti, 2015, p. 1). Not only do people have the ability to recover from psychosis including schizophrenia but some people have been documented to experience improvement beyond their pre-psychotic state which is a far more uplifting picture of potential for recovery and personal growth

(Williams, 2011).

What is primarily missing in Kraeplin’s work as well as many mental health practitioners and researcher’s thought processes is the recognition of real hope for recovery. Synder (2002) defines hope as “… a positive motivational state that is based on an inter-actively derived sense of successful (a) agency (goal-directed energy), and (b) pathways (planning to meet goals)” (Synder, 2002 p. 250). Without being in a motivational state that comes with a sense of agency will result in a loss of hope that could negatively impact the ability to recover. Hope has been identified in studies over and over again as a central feature of recovery (Bland and Darlington, 2002). In Bland

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and Darlington’s (2002) study one family member described hope "... as the only thing

that can get you through because if you don't have hope that it's going to get better, you don't really have anything" (Bland and Darlington, p. 63).

Paris Williams is a psychologist whom has lived with experiences that most likely would have been diagnosed as psychosis. In his dissertation, A Multiple-Case Study

Exploring Personal Paradigm Shifts Throughout The Psychotic Process From Onset To

Full Recovery, Williams (2011) speaks about how mental health practitioners generally work to help a person experiencing psychosis return to their previous pre-psychotic state.

Williams (2011) explains that it is more accurate to describe individuals as living in a homeodynamic state, meaning a non-reversible, constantly evolving state as opposed to an unchanging homeostatic state. Ideally, recovery should help the individual seek an ever-evolving, non-homeostatic state with reduced distress rather than trying to return people to a pre-psychotic state (Williams, 2011). Since human beings may be described as already in a homeodynamic state, hoping for people to return to a pre-psychotic level of functioning would not be possible and could lead to further disappointment and confirmation of a poor prognosis. This push towards inevitable failure is all the more devastating when parents, the identified “hope carriers,” and caregivers buy into this idea

(Bland and Darlington, 2002).

When the mental health system designates individuals with a mental health diagnosis, which connotes a “poor” prognosis, and tells them that they should prepare for a life of

only coping, the identified patient as well as their families may lose hope for a happy and

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worthwhile future. Pat Deegan describes this as a violent act, since it dehumanizes and

reduces individuals to a generic diagnostic label (Deegan, 2004).

Many people including Deegan have found themselves experiencing dehumanizing treatment as they are transformed from “…being a person to being an illness: "a schizophrenic", "a multiple", "a bi-polar" (Deegan, 1996, para 21). Since schizophrenia and other mental health disorders are many times considered incurable and only managed by life long medication and treatment, people assigned these diagnoses find themselves

being repeatedly hospitalized and given heavy narcoleptics (Deegan, 1996). Deegan

(2004) reminds us that when freedom is diminished, humanity is diminished. Conversely,

when freedom is exercised, human life flourishes (Deegan, 2004). Deegan (2004) goes on

to explain that people need the freedom to be “incurably themselves” and the first step to

being free is to be free from stigma, labels and a life filled with a sense of hopelessness.

Pat Deegan experienced first hand what she describes as the “pronouncement of doom” when the psychiatrists treating her told her that she had “undifferentiated chronic schizophrenia and no one gets well from that” (Deegan, 2004, para 12). Her psychiatrist told her to “… avoid stress and settle for a life of coping” (Deegan, 2004, para 12).

Deegan invites us to view people with disabilities not as broken but to look toward the rehabilitation machine as something that is broken and needs fixing (Deegan, 2004).

Hope, as a verb, is defined by the dictionary as “To want something to happen or be

true and think that it could happen or be true” (Hope, n.d., para 1). Many studies have confirmed hope to be crucial in the mental health recovery process (Redlich, Hadas-

Lidor, Weiss, and Amirav, 2010). When family members as well as transition age youth

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(TAY) begin to buy into the idea of what Deegan (2004) describes as a “prognosis of doom,” they lose the ability to believe that recovery could happen or that it is even possible. In Deegan’s speech “Recovery and the Conspiracy of Hope” she invites us to ask the question “How do we create hope filled, humanized environments and relationships in which people can grow?" (Deegan, 1996, para 12). The development of the Bridges of Hope curriculum is an attempt to partially address Deegan’s question.

Parents of TAY Who Experience Extreme States, Hear Voices and/or Experience

Extreme Emotional istress

Family burden. The prevalence of diagnosable mental health disorders among

16-25 year olds is estimated at 5-9% (Jivanjee, Kruzich, and Gordon, 2009). Although

family members are the primary caregivers for TAY with mental illness, they often lack the knowledge and skills necessary to help their loved ones (Pickett-Schenk, Lippincott,

Bennett, & Steigman, 2008). The negative consequences experienced by family caregivers has been traditionally called family burden (Hasson-

Ohayon, Levy, Kravetz, Vollanski-Narkis, and Roe, 2011). Living with extreme experiences and/or hearing voices can create a significant burden on family caregivers especially if there are not adequate community resources available to them (Grover,

Pradyumna, & Chakrabarti, 2015). Additionally, as a result of the struggles of their loved one, family members are deprived of the rewards and reciprocities of human interaction that most people expect from those they love (Lefley, 1989). Hasson-Ohayon, et al.

(2011) discovered that family burden is positively correlated with the severity of the

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diagnosed family member's struggles, number of hospitalizations, family environment, the family's social support and the way the family copes with their family member’s extreme experiences. Bird, Premkumar, Kendall, Whittington, Mitchell, et al. (2010) found that family interventions produced clinically important reductions in the risk of

relapse and hospital admission. Family member's opinions about the “illness” also

impacted their experience of burden, which is something that family interventions can

positively address (Hasson-Ohayon, et al. 2011).

Researchers Grover, Pradyumna and Chakrabarti (2015) found that the coping

mechanisms of caregivers affect patient related outcomes. This finding places special importance on how family members cope with the care of their loved one. Religion can play a supportive role that may decrease depression, better self-esteem and better self care for family caregivers (Grover, Pradyumna, & Chakrabarti, 2015). Bland and

Darlington (2002) found that along with religious beliefs, family and friends, as well as professionals may be sources of hope and help in the coping process. In the discussion section of their research article, Bland and Darlington (2002) state that a high level of religious belief among parents of people who experience extreme states and/or hearing voices, suggests that the saying "there are no atheists in the trenches" may have some truth to it (Bland and Darlington, 2002, p. 67). Bland and Darlington (2002) noted that many parents find hope not as a stable trait but something that increases and decreases depending on what is happening in their lives.

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The impact and role of stigma. Internalized stigma or self-stigma refers to the

process by which a person adopts stigmatizing views widely held by the general public

(Hasson-Ohayon, et al., 2011). At a certain point, most parents have learned how to stop

reviewing everything they have done in their lives that could have caused what they

perceive as their loved one’s “mental illness” although they may still carry unjustified guilt (Lefley, 1989). In addition to unjustified guilt about their family member’s experience of extreme states and/or hearing voices, parents and family members live in an environment where there are offered conflicting clinical viewpoints depending on the clinician they are working with. One such conflicting viewpoint is the concept of insight paradox. The insight paradox refers to the fact that some studies show that insight may help with treatment compliance and recovery, while other research shows that insight into perceived “illness” may lower self esteem, emotional wellbeing and hope as well as increase despair (Hasson-Ohayon, et al. 2011). Family involvement can present additional challenges such as cognitive dissonance that occurs when parents receive conflicting advice from professionals. Parents may find themselves labeled overprotective when they are involved in their child's life and then labeled neglectful

when they encourage independence (Lefley, 1989).

Stigma moderates the relationship between insight into extreme experiences and/or hearing voices, and the hope and self-esteem of people who feel distressed and/or engage

in socially deviant behaviors. People with high levels of insight and low levels of self-

stigma have the most positive outcomes (Hasson-Ohayon, et al. 2011). Alternatively, for

parents, Hasson-Ohayon et al. (2011) found that insight increased self-stigma and

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suggested that self-stigma among parents and consumers could be reduced by including

family members and consumers as part of the team that coordinates mental health

interventions.

In order to survive in a world full of stigma, many people have felt the need to be

dishonest about their own experiences. One person who speaks openly about this is

Rufus, a psychologist who hears voices. Rufus is the protagonist in a documentary called

The Doctor Who Hears Voices (Leo Regan, 2015). Rufus was diagnosed with acute

schizophrenia when he was 18 and has since become a psychologist. Rufus shares in the

documentary that he had to be dishonest in order to become a psychologist since stigma

surrounding schizophrenia was so high that his university would not have let him become

a psychologist if they had known about his diagnosis. Rufus has dedicated his life to

treating people using unconventional methods that do not rely on medications or

pathologizing mental experiences. Rufus repeatedly stated in the documentary that he

believed that the person he was treating could lead a healthy life while hearing voices

(Leo Regan, 2015). Rufus shows us that mental distress can be treated without the need

to pathologize, thereby creating additional stigma.

The role of hope in families. Hope is a major element in a family's ability to cope

with extreme states and/or hearing voices (Redlich, et al. 2009). Even though it is very

important that family members who don’t experience extreme states and/or hearing voices have hope, it is perhaps even more important that they project this hope toward the family member who does experience these states (Redlich, et al. 2009).

Jivanjee, Kruzich, and Gordon (2009) reviewed the availability literature without finding

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any studies that examined positive ways to get through the transition years or that included how to involve parents in supporting TAY. Sixty interviews of TAY diagnosed with severe mental health issues revealed that parents expressed a number of concerns.

They expressed thoughts that they were the last people the youth wanted to talk to about

their diagnoses, and that the youth wanted to “break away” from family involvement

(Jivanjee, Kruzich and Gordon, 2009). During the time in their lives when TAY reach

age eighteen they have the right to refuse to release information to their parents and may

choose to keep them from being involved in their mental healthcare (Jivanjee, Kruzich

and Gordon, 2009).

Although parents expressed a desire to foster independence among their children, they

also said that services and money allocated to help young people was inadequate and that

without their help no one would be able to assist their children (Jivanjee, Kruzich and

Gordon, 2009). Thoughts filled with uncertainty and anxiety about the future can cause

hope to feel elusive. Jivanjee, Kruzich and Gordon (2009) found that many parents

experienced feelings of grief, disappointment and desperation during their child’s

transition age years. Although many parents grieve for the changes their child has

experienced as a result of mental illness, there are few resources designed specifically to

aid parents in retaining and regenerating hope in the face of the losses and struggles

inherent in dealing with extreme experiences, hearing voices and/or socially deviant

behavior.

Lefley (1989) found that both clinicians and nonprofessional family members

assigned priority to psycho education, behavior management techniques and involvement

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in support groups as the best ways to help consumers. In Lefley’s study parents identified

self-help groups and residential separation from their child as more effective than

individual or family therapy (Lefley, 1989). These resources along with hope oriented curriculum could better assist family members in keeping hope alive.

Transition Age Youth (TAY) and Extreme Experiences

TAY have limited access to health care and represent a unique age demographic. In their article “US Patterns of Mental Health Service Utilization For Transition-Age Youth

And Young Adults,” Pottick, Bilder, Vander Stoep, Warner and Alvarez (2008) found that weak links between child-serving and adult-serving institutions negatively affect the lives of TAY diagnosed with “emotional disorders.” Unfortunately, TAY diagnosed with

psychiatric challenges “… fare poorly compared with their peers in completing school

and adopting adult occupational and social roles” (Pottick et al., 2008, p. 374). Pottick et

al. (2008) also noted that there is a poverty of research focusing on the mental health status of TAY. TAY are more likely to use inpatient vs. outpatient treatment than other age groups, which can be disruptive and destabilizing (Pottick et al., 2008). Typical adult care facilities and residential groups cater to an older group of people with more chronic problems than the TAY population who are just beginning to become adults (Pottick et al., 2008). Pottick et al. (2008) found that, according to the US census, 30% of TAY (18-

24 year olds) in the US do not have health insurance, which further limits their access to mental health care.

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TAY diagnosed with “serious mental health concerns” (SMHC) are more at risk of

dropping out of school, engaging in criminal activity and having residential instability

than youth without SMHC (Vorhies, Davis, Frounfelker, and Kaiser, 2012). According to

Vorhies et al (2012) employment can protect against these outcomes. Deegan (2004) also

confirms “it’s nearly impossible to make your own future when you are not part of the

economic fabric of the culture you live in” (Deegan, 2004, para 15). Being employed is

linked to increased well-being, self-confidence, social interactions, increased

psychosocial functioning and the formation of meaningful relationships with peers and in

the community (Vorhies, et al., 2012).

Rose, Thornicroft, Pinfold, and Kassam (2007) found that most young people who

experience extreme states and/or hear voices do not seek help. This may be due to a

variety of reasons including embarrassment about being labeled as “mentally ill” and the

stigma of “mental illness” in the general population. There is strong evidence that

negative emotions and attitudes act as barriers to receiving much needed mental health

services. Compared with adults, young people have less favorable attitudes towards

people with perceived “mental illness” (Rose et al., 2007). The media, family and peers

all can act as reinforcers of the negative stereotypes about people who experience

extreme states and/or hear voices (Rose et al., 2007).

Despite media preference for the medical model view of mental health, there are many alternative websites and resources that offer different perspectives on mental health

aimed at TAY. Sascha Altman Dubrul (2013) is someone who has experienced extreme states and created a website called The Icarus Project which helps young people looking

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for alternatives to the biopsychiatric paradigm. In the video titled Sascha Altman DuBrul:

Navigating Brilliance And Madness, Altman Dubrul remarks:

“… many people who are affected by the mental health system in North America today have no idea how much the rise of the DSM and biopsychiatry has to do with the Reagan

era and neoliberal economic policies that reshaped the whole language and culture of mental health” (Altman DuBrul, 2013).

The history of the perceptions and categorizations of “mental illness” has had very profound consequences that influence which treatments are available and how much self- determination consumers have regarding their healthcare. Consumer driven resources like the Icarus Project, Intervoice and the Hearing Voices Network all seek to create safe spaces where self-determination, human rights and information can be readily available for people who are most directly affected by the mental healthcare system.

The Need for a Support Group Curriculum that Promotes Self-determination,

Human Rights and Hope

In most areas of the United States there are family-led education programs currently available such as National Alliance on Mental Illness’s twelve week Family-to-Family

Education Program (NAMI Family to Family, n.d.). I was unable to locate any TAY

parent support groups that focus on providing a human rights based and self- determination promoting curriculum (Pickett-Schenk, et al. 2008).

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Methods

Bridges of Hope Curriculum Development

Originally the guiding principle of the development of the Bridges of Hope curriculum was the concept of recovery. As the research progressed and I delved deeper into the literature located at websites like Mad in America and I found a wealth of material written by people who experience extreme experiences and/or hear voices. After reading these stories filled with wisdom from lived experience, it became clear to me that recovery can be a loaded term. Recovery implies that there is an illness that someone can recover from. The Bridges to Hope curriculum therefore ultimately became focused on self-determination and human rights which allows for the consumers to have more control over content.

Initially, the idea of creating a hope-oriented curriculum began when I watched

Eleanor Longden’s TED talk. I walked away from viewing that video with a mission to show it to anyone who would agree to see it. When Longden spoke about her experience hearing voices and the non-stigmatizing approach of finding meaning behind the voices in order to understand their purpose, I knew that I wanted to incorporate her message into the curriculum (Longden, 2013). Longden describes her voices as “a sane reaction to insane circumstances” which resulted from traumatic experiences in her life (Longden,

2013). Longden’s ability to heal and become an advocate for non-pathologizing approaches to working with people who hear voices inspired this curriculum to focus on human abilities instead of inabilities and to use non-stigmatizing language. The Hearing

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Voices Network and the Anti-Psychiatry Movement strongly influenced the development

of this curriculum and opened the doors to my own explorations of the concept of

“mental illness,” the medicalization of socially deviant behaviors and the work of various

survivor-experts in the field of mental health.

Creating a hope-based curriculum is an attempt to avoid the mistake of believing that

there is a specific “prognosis” for someone based on a psychiatric label. Mary Ellen

Copeland, founder of WRAP, shares that

For years people had been told that they would never recover, never meet their life goals and dreams. Every time they heard this, usually from a well-meaning care provider, they felt worse and worse. Only when they began to hear messages of hope, and that others were recovering and doing the things they want to do, did they begin to realize that the same was possible for them (Copeland, 2004, p. 74).

This curriculum aspires to be a message of hope to parents and their loved ones that we can work together toward a better future.

Theoretical Approach

The theoretical approach I used for collecting and analyzing data is a qualitative

research method entitled Grounded Theory (Charmaz, 2006). Grounded Theory

postulates that theory must be grounded in what is observed and that the researcher

creates their own theory based on their analysis of data. Grounded theory is seen as a

method of discovery (Charmaz, 2006). It was clear from the moment I began collecting

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data during my interview with Caroline Mazel White that any theory about mental health

and mental illness I had known was being challenged. Employing Grounded Theory

(Charmaz, 2006) in my research and analysis of data unearthed views different from the

Euro-Western medical model to which I had previously been exposed. Freedom to adapt

to data as it was being collected allowed me to seek out alternative views and stories that

informed my learning process and ultimately, informed how the curriculum was shaped.

Description of Interview

To develop this curriculum, I interviewed Caroline Mazel White from the Hearing

Voices Network. Since White has a busy schedule and does not live in my area we

corresponded by email. I provided a list of interview questions to which she responded

and I saved in a word document. White electronically signed and returned a consent form

that was submitted to faculty member Jennifer Maguire, PhD. A review of the literature

and the information gained from this interview was used to inform the direction and

scope of the curriculum. The following is the list of questions I asked White:

1. Through your experience working with people with mental illness

(schizophrenia in particular), what are the three most effective

interventions you feel are helpful?

2. Can you explain how you envision hope for a person dealing with

severe and persistent mental illness?

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3. If you were developing a curriculum for parents of Transition Age

Youth with severe and persistent mental illness, what are the components that are most important to include?

4. What are the necessary factors needed in a household or family unit that make recovery possible?

5. What are the factors that hinder recovery (in your professional opinion)?

6. As a professional, how do you successfully deal with a client's unawareness of their mental illness?

7. Can you speak about your professional experience with hope for recovery from Schizophrenia?

8. Can you share a story about a person you knew who recovered from severe and persistent mental illness?

9. What do you think are the consequences of parents, families or young people losing hope when faced with mental illness?

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10. What role do you believe stigma plays in reducing hope for

recovery from mental illness?

11. What are some practices that are useful to build hope and

resilience in the face of mental illness?

12. Please tell me any miscellaneous wisdom you have on the topic of

mental illness and recovery.

Interview Methods

Initially I had attempted to interview many different professionals both in my community and around the country. Unfortunately, most replies informed me that the professional being solicited was too busy to participate. When I reached out to the

Hearing Voices Network, Caroline Mazel White confirmed that she was able to participate. With White’s unique perspective, I was able to thoroughly review the available literature and find voices of survivors in published works, which I included in the Bridges of Hope curriculum.

White highlighted the healing that empowerment can bring to those who have extreme experiences and/or hear voices. Previously, when I began writing the introduction to this project, I used the standard DSM diagnostic and medical model based language to speak about people who are service users in the mental health system. After listening to and

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absorbing White’s critique of pathologizing language that disempowers, I reviewed my

use of language and changed my wording to be more empowerment based.

Although the interview questions that I used for this project were steeped in

pathologizing language, I was able to gain insights and critiques from White that taught

me to how to create a curriculum that focuses on empowerment, human rights and self- determination instead of implying the need for “recovery” from “illness.”

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Results

Interview of Expert

Caroline Mazel White has both personal and professional experience with extreme

states and hearing voices and she facilitates trainings at the Hearing Voices Network and

The Western Mass Recovery Learning Community. White’s responses to the interview

questions caught me completely off guard and radically changed how I subsequently

approached the Bridges of Hope Curriculum. In response to interview questions White told me that it was difficult for her answer my questions because they were written under the assumptions of a disease model. In my initial project title and in the text of questions I posited to White, I used words such as “chronic mental illness” and “persistent mental illness”. White explained “… when things are referred to as "severe", "chronic",

"persistent" it is often difficult to then hold onto "hope" (C. White, personal communication, December 6th, 2015).

My interview with White allowed me to fully realize how much the verbiage of my questions and my own views on “mental illness” perpetuated a paradigm, which pathologizes individuals and may cause hope to seem elusive. I used the wisdom contained in the interview to create a different perspective and new way of engaging with people who have extreme experiences and/or hear voices. I searched for more published work that challenged the Euro-Western disease model of “mental illness” and privileged the perspective of voice hearers. Knowledge gained from Leah Harris’s (2009) work, pointed to the absence of self-determination and human rights as critical factors leading to hopelessness in a system that continues to perpetuate the belief that “…mental

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illnesses are phenomena independent of human motivation or will” (Szasz, 2000, para 1).

Description of Curriculum

Project outcomes. After a considerable review of the literature and a qualitative analysis of my interview with Caroline Mazel White, as a researcher and learner, I was able to gain considerable knowledge and insight into how learning about alternative viewpoints beyond the dominant western medical model could be helpful not only for parents but for myself as a clinician. This learning challenged the basic assumptions I had as a mental health clinician and as a MSW student. It also put forth an interesting dilemma since creating a human rights and self-determination based curriculum meant that I would be challenging what many parents want from the mental health system.

Many parents with whom I have worked come to mental health support groups to brainstorm ideas about how to get their children into treatment, whether or not that is what the youth’s expressed wish.

This challenge prompted me to scour the research for ideas that both support parents who struggle with how to help their children while also not compromising their child’s right to self-determination. The best way I found to resolve this dilemma was to offer multiple viewpoints and divergent perspectives throughout the curriculum and engage parents in meaningful dialogue and sharing.

Reading and re-reading articles and viewing multimedia for this project allowed me to

deepen and broaden my understanding of mental health and human rights. Organizing the curriculum helped me come to terms with the fact that my viewpoint in mental health is

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ever-changing and complex, there is no right answer or magic decision that strikes a

balance between conflicting viewpoints and needs.

As I began collecting data and reading peer reviewed articles, my preconceived

notions regarding what type of curriculum would be helpful were refined and re-

evaluated. Ultimately, I came up with a curriculum that spans six ninety minute biweekly

parent group sessions. Each session offers a substantial amount of time for reflection,

discussion and analysis. These sessions were organized in the following sequence:

SESSION 1: Surviving schizophrenia video (Attitudelive , n.d.). and discussion Discussion of the medical model & alternative models Discussion of meaning finding around schizophrenia and alternative views/stories Reflections

SESSION 2: Person first language (Snow, 2009) (Handout: http://www.inclusionproject.org/nip_userfiles/file/People%20First%20Chart.p df) Pat Deegan: https://www.patdeegan.com/pat-deegan/lectures/conspiracy-of-hope (Deegan, 1996) Group discussion of person first language and Pat Deegan’s work (Deegan, 1996) Group discussion of community resources available including peer-led resources Reflections

SESSION 3: Compassion for voices video and discussion (King’s College London: Cultural Institute, 2015) https://www.youtube.com/watch?v=VRqI4lxuXAw Discussion of community resources available. Reflections

SESSION 4: Beyond the dirty window, voices of recovery and hope video and discussion (Harris, 2010) https://youtu.be/faJkmuzhgZg

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Group discussion of impact of trauma on hearing voices and extreme experiences. Group discussion of community resources available. Reflections

SESSION 5: Group discussion of values and ethics that support se lf-determination and recovery, values and ethics (Copeland, 2004 p. 75) Discussion of community resources available and parent self-care practices. Reflections

SESSION 6: Group discussion of multicultural perspectives around hearing voices and extreme experiences. Discussion of human rights and acceptance of basic human freedoms including freedom/choice to not seek help Group discussion of community resources available. Closing reflections

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Conclusion

Curriculum Development

Using the framework of Grounded Theory (Charmaz, 2006), the data I collected was

ever evolving and continuously informed by review of the literature. The use of

Grounded Theory (Charmaz, 2006) allowed me to have freedom as a researcher to play with ideas that came up in the interview around human rights and self-determination and move in a variety of directions. Soon after my interview of Caroline Mazel White, I found myself searching through the available literature and I was amazed to find so much information outside the mainstream western medicine model of mental illness in websites such as the Hearing Voices Network (Hearing Voices Network USA, n.d.) and madinamerica.com (Mad In America - Science, Psychiatry & Community, n.d.).

The results of the interview led me to search the literature for new terms, new ideas and new frameworks. One discovery that came as a result of this search was the written work of Stanislav Grof, one of the founders of transpersonal psychology. Grof’s (2008) ideas regarding the existence of spiritual emergencies radically shifted my focus to a more growth based perspective. Grof (2008) explained

Among the benefits that can result from psychospiritual crises that receive expert support

and are allowed to run their natural course are improved psychosomatic health, increased

zest for life, a more rewarding life strategy, and an expanded worldview that includes the

spiritual dimension (Grof, 2008, para 5).

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Paris Williams explained that a common assumption “…. held by many but not all

transpersonally-oriented psychologists is that is that while the line between spiritual emergency and psychosis is often faint, such a line does exist” (Williams, 2011, p. 63).

Williams (2011) goes on to show that a number of scholars and clinicians believe “… psychosis may actually be the manifestation of a natural attempt of a psyche to survive and/or heal from an untenable situation…” (Williams, 2011, p. 58). Williams found that recovery research strongly suggests that psychosis can go away on its own when supported in a compassionate environment (Williams, 2011).

Caroline Mazel White explained that it isn’t “… helpful to over-simplify through the use of diagnostic language phenomenona that may be related to trauma, cultural factors, spiritual experiences, stressors and many other influences” (C. White, personal communication, December 6th, 2015). What White has found to be helpful has been to

“… allow people to frame and explore their experiences in their own words“ (C. White, personal communication, December 6th, 2015). From the interview, I gained a deeper sense of what it means to not only respect human rights but to advocate and promote human rights in a mental health context in order to promote healing. During the interview and subsequent literature review, I realized that there is an entire movement of people like Rufus, Paris Williams, Pat Deegan, Caroline Mazel White and others with lived experience who are working together to create peer run support networks all over the world. These networks challenge the dominant system of mental health doctors/experts and patients/consumers by promoting and making a priority of human rights such as respect and dignity.

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The human rights framework used to create thw Bridges of Hope curriculum was the

Universal Declaration of Human Rights (UN General Assembly, 1948). In my estimation, this declaration, adopted on December 10th 1948 sets the tone for true dignity based

human rights. Article 1 states

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood (UN

General Assembly, 1948, Article 1 para 1).

Article 1 speaks directly to the fact that we are all entitled to dignity and rights because we are human beings. Article 1 acknowledges that we are all endowed with reason and conscience, not simply those who are not diagnosed with mental disorders. In

UN general assembly resolution 46/119, the UN developed a list of fundamental freedoms and basic rights for “persons with mental illness” (General Assembly resolution

49/119, 1991). The resolution notes “all persons with a mental illness, or who are being

treated as such persons, shall be treated with humanity and respect for the inherent

dignity of the human person” (General Assembly resolution 49/119, 1991, Principle 1

para 2). There is a central idea put forth from the Universal Declaration of Human Rights

as well as UN General Assembly resolution 49/119 which is that human beings have

“inherent dignity.”

Dignity is defined by Cambridge Dictionary as “the quality of a person that makes him or her deserving of respect…” (Cambridge English Dictionary, n.d., para 1). The concept of shared dignity among human beings, regardless of whether they experience extreme states or hear voices, inspired me to take into consideration how each person’s

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humanity needs to be valued and respected when planning support group curriculum.

Respecting a person’s humanity invites us all to include that person fully into the process

of their treatment and decisions that affect their life.

The UN Assembly resolution 49/119 Principle 1 states “There shall be no

discrimination on the grounds of mental illness. "Discrimination" means any distinction,

exclusion or preference that has the effect of nullifying or impairing equal enjoyment of

rights” (General Assembly resolution 49/119, 1991, Principle 1 para 4). Additionally in

Principle 1, the UN speaks about how a person will mental illness has all the human

rights due to them as recognized in “…the Universal Declaration of Human Rights, the

International Covenant on Economic, Social and Cultural Rights, the International

Covenant on Civil and Political Rights and in other relevant instruments, such as the

Declaration on the Rights of Disabled Persons and the Body of Principles for the

Protection of All Persons under Any Form of Detention or Imprisonment” (General

Assembly resolution 49/119, 1991, Principle 1 para 5).

While developing the curriculum, I kept in mind the UN Assembly resolution 49/119

and the UN Declaration of Human Rights. Regardless of the public or the clinician’s

perception of a person’s capacity or competency, they are due basic human rights as outlined by the UN Declaration of Human Rights. Non-discriminatory practices in mental

health care is not only a best practice, it is a universal human right.

Those that society considers experts such as psychiatrists and psychologists generally

follow the medical model and use the DSM to diagnose mental disorders without much

partnership with mental health consumers. Psychiatric medications and medical model

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treatments can have serious side effects. Caroline Mazel White reports that, after growing up on heavy anti-psychotics, she experienced weight gain, tremors and slowed brain and body functioning (C. White, personal communication, December 6th, 2015). White shares

Unfortunately, these interventions did not do anything to empower me to stand up to my difficult voices and develop the more mutual relationship I have with them now which allows me to work full-time and support others. What was helpful to me, personally, was to join a roller derby team, a spiritual community, and attend Hearing Voices groups where people asked me questions about what my voices said, what they sounded like, what they represented to me (C. White, personal communication, December 6th, 2015).

In order to make fully informed decisions regarding psychiatric medications, consumers must be able to be allowed basic freedoms to choose their doctor and receive accurate information.

As my literature research and analysis of the interview data continued, it became clear that human rights based education in mental health for parents involved re-educating myself. Incorporating the concepts of human rights and self-determination into a support group for parents required that the curriculum to be about promoting the right for consumers to chose to engage in activities that their parents might not agree with.

Although psychiatric medications can have side effects, many times medication is one of the only options parents have to help their loved one take control over their lives. The subject of medication comes up frequently for parents. Mental health consumers have the

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right to refuse medications in most situations and respecting their right to refuse treatment and assistance when it seems that they desperately need it is a usually a common reason why parents seek support.

It was as a Master of Social Work student that I was first introduced to a term called

Anosognosia. Treatmentadvocacycenter.org describes Anosognosia as meaning “…"lack of insight" or "lack of awareness" - is believed to be the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications”

(Anosognosia - Treatment Advocacy Center, n.d., para 1). Caroline Mazel White was the first person I knew who challenged the validity of Anosognosia. White challenged the notion of a mental health professional being able to label someone as being “unaware” of their mental illness. White said

Also, to be frank, I find question 6.6 "As a professional, how do you successfully deal with a client's unawareness of their mental illness?" a bit scary. In my own work, I would never make the assumption that I have a better understanding of person's life or inner world than they do. I am not sure how that is even possible” (C. White, personal communication, December 6th, 2015).

Many parents report that if only their loved one were aware of their illness, they would be

able to seek help for themselves and get on the path to recovery. For many parents, learning to accept that their loved one has the choice to refuse treatment regardless of

their perception of having an illness or not can be painful to accept. Building curriculum

that invites dialogue about human rights and the youth’s own perception of their challenges can help parents build acceptance and understanding about what is within their

power to accomplish.

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The founder of WRAP (The Wellness Recovery Action Plan), a tool used in mental

health recovery, Mary Ellen Copeland, shared that the most important concept to have come from her work is self-determination which she described as “…the key to the recovery journey…” (Copeland, 2004, p. 70). She explained “some people talk about a defining moment—that moment when they knew they had to take back control over their lives. Others describe a gradual process, an awakening. But without self-determination, people stagnate” (Copeland, 2004, p. 70). Self-determination implies that the person seeking mental health services makes the decisions in all facets of service delivery.

Ultimately, the person who is having the “psychotic” experience must make sense of the experience within the context of their life. Grof (2008) shares that “… many of the conditions, which are currently diagnosed as psychotic and indiscriminately treated by suppressive medication, are actually difficult stages of a radical personality transformation and of spiritual opening” (Grof, 2008, para 1). The consumer must always remain the dignified expert in their lives and we as professionals and parents must respect all people’s human right to self-determination since it is the key to healing (Copeland,

2004). Respecting an individual’s right to self-determination does not preclude well meaning parents and professionals from at least attempting to help them by offering resources and support.

My discovery of the importance of respecting human rights and self-determination was the final step that brought my entire curriculum together. Each session in the Bridge of Hope curriculum honors the inner knowledge of people, regardless of their psychiatric

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labels, and encourages parents to reflect on how to promote and encourage their children

to lead self-directed lives.

Implications for Social Work Practice

This project resulted in a radical change in my own framework regarding research and

practice in mental health. Before I began this project, I had watched Eleanor Longden’s

TED talk but it hadn’t significantly changed my views on mental health and human rights in relation to the regular work I do as a clinician. After listening to Caroline Mazel White and using to my own intuition, I realized that my previous ideas about mental health were not adequately informed. I found that the world is pushing into a new realm where peers, psychiatric survivors and those who hear voices and/or experience extreme states should be leaders in the construction of the mental health system.

While collecting data for this project, I kept running an existing TAY parent support group. During every meeting, I kept learning more and more from the thoughts, feelings and experiences of the parents who joined me. Parents hold a very important role in the life of a young person who hears voices and/or experiences extreme states. There are many situations where the parent is the only person that the young person has to support them and help them during times of great distress and anguish. This sacred and important position which parents hold can be a great burden but also a great opportunity for them to help their loved one in profound ways.

Parents of these young people may have only been exposed to the dominant medical

model of mental illness and alternative viewpoints are not readily available. Therefore, it

44

is logical that parents seek medications and forced hospitalization for their children in

distress. Although I would never advocate that medications and hospitalization are

incorrect responses to help people in extreme distress, through my data analysis and

development of curriculum I found alternative stories and voices, which have been

silenced that offer alternatives. As parents, clinicians and citizens of the world, is it not

fair to include these views and to consider human rights and self-determination when it

comes to mental health?

When interviewed by Ryan Howes, Thomas Szasz wisely shared “…the only person

who can change a person is that person himself” (Howe, 2009, Question 4 para 1). Before

engaging in the Bridges of Hope curriculum development, I would have at least partially

disagreed with Szasz’s (2009) statement. After all, I had very intentionally started the

Master in Social Work program due to a near death experience and a radical shift in my

values to seek to help as many people as possible in my life. Szasz’s (2009)

acknowledgement that change must take place within the individual hints at a profound

realization of how limited my power is as a social worker and therapist which ran counter

to what caused me to choose this profession in the first place. This shift in understanding about who creates change and who is responsible helped me to fully incorporate human rights promotion into the curriculum since ultimately it is the youth who has the most power for change and growth.

It became clear early into my search for literature and “experts” in the field that the

entire concept of “mental illness” was controversial. I learned about peer-led support groups and centers, and different interpretations of unusual experiences such as spiritual

45

emergencies (Grof, 2008) and the “…moral right of the individual to decide what his experience means to him" (Moskowitz, 2008, p. 335). These controversial views taught me to search outside the box for ways to support youth and their family members.

Recommendations for Future Work

This curriculum was developed to be used with an already existing English speaking parent group. Additionally, in future, the use of this curriculum could be expanded to an already existing Spanish speaking parent group in the same program. At a later date, a more extensive curriculum could be developed for youth and parents together that would invite parents and youth to teach each other. Having parents and youth together could create an environment where a deeper understanding of self-determination and human rights could nurtured in the mental health system as well as at home. The inclusion of youth into a support group could increase their sense of power and agency. Generally parents and mental health professionals hold more societal power than TAY youth who have been labeled with a psychiatric diagnosis. Including youth in an educational and reflective support group could empower them to collaborate with their parents in order to

make decisions about what will happen in their lives. People with lived experience such

as Harris (2009) remind us that in order to understand how best to help youth heal and

have meaningful lives we must listen to what they have to say. As mental health workers

and as family members, we must work together to offer supportive, healing environments

for youth and family members to come together and learn from each other.

46

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Appendix

Consent Statement

You are being invited to participate in curriculum development to be used in the future

for a parent support group and a master’s project write up. Interviews will be conducted

in person, by phone or email. The results will be used to develop a recovery-focused curriculum with the intended purpose to be delivered to parents of transition age youth dealing with severe and persistent mental illness. No compensation will be provided to

participants.

If you agree, you will be asked to participate in one interview, which will be designed to

gather information about recovery and hope in the face of severe and persistent mental

illness. You will be asked approximately 10-20 questions depending on your level of

expertise and contributions to the field of mental health. You can take as much or as little time as you like to answer the questions. The questions asked during the interview are not

anticipated to cause risk or discomfort beyond what is encountered in daily life.

Interviews will be audio recorded if in person. On the phone the interviewer will type

interviews verbatim. Email interviews will saved to be used for curriculum development purposes.

Your interview will be used to inform the development of the curriculum and may be used in written form in a master’s project write-up about the curriculum development

56

process and outcome. For the most part, the findings will be used to inform the development of the curriculum; however, something you say during an interview may be quoted in the curriculum or master’s write up. You can choose whether you want your

identity to be linked to your quote. This includes information other than your name that may identify you.

I understand that the interviewers will answer any questions I may have concerning the investigation or the procedures at any time. I also understand that my participation in an interview is entirely voluntary and that I may decline to participate or withdraw at any time without jeopardy. I understand that the investigator may terminate my participation in the interview at any time. If you have questions about the interview please contact

Danielle Aubin in the HSU Department of Social Work at (415) 706-4235 or [email protected]. If you have any concerns regarding this project, or any

dissatisfaction with any part of this assessment, you may contact the IRB Chair, Dr.

Ethan Gahtan, at [email protected] or (707) 826-4545. If you have questions

regarding your rights as a participant, you may report them to the IRB Institutional

Official at Humboldt State University, Dr. Rhea Williamson, at [email protected] or (707) 826-5169.

Name

Email Address

Phone Number (____)______

57

Affiliation: please list multiple affiliations if they apply (example: Hoopa Tribal Member,

HSU Alumni, community member, HSU student, dancer, volunteer, etc.)

______

If you are quoted in a report, is it ok to use your name and affiliation? For example: John

Doe, MFT, private practice

Yes

No Please use my affiliation, but not my name.

Please don’t quote me at all in the curriculum or masters project write up

Please notify me if you will be using a quote of mine in the curriculum or masters project write up

Signature of Participant Date