In 2003 the Bush Administration's New Freedom Commission asked mental health service providers to begin promoting "recovery" rather than churning out long-term, "chronic" mental health service users. Recovery's Edge sends us to urban America to view the inner workings of a mental health clinic run, in part, by people who are themselves "in recovery" from mental illness.
In this provocative narrative, Neely Myers sweeps us up in her own journey through three years of ethnographic research at this unusual site, providing a nuanced account of different approaches to mental health care. Recovery's Edge critically examines the high bar we set for people in recovery through intimate stories of people struggling to find meaningful work, satisfying relationships, and independent living.
This book is a recipient of the Norman L. and Roselea J. Goldberg Prize from Vanderbilt University Press for the best book in the area of medicine.
|Publisher:||Vanderbilt University Press|
|Product dimensions:||5.40(w) x 8.10(h) x 0.70(d)|
About the Author
Neely Laurenzo Myers is an Assistant Professor of Anthropology at Southern Methodist University.
Read an Excerpt
An Ethnography of Mental Health Care and Moral Agency
By Neely Laurenzo Myers
Vanderbilt University PressCopyright © 2015 Vanderbilt University Press
All rights reserved.
Where did we come from? We came from nowhere.
We came from institutions. We came from the streets.
We were no one, but we had a desire to change our lives.
— Ed Knight, Keynote, Alternatives Conference, October 2006
Okay, show of hands, how many people forgot their medications today?"
A few hands went up.
"Oh, you're lyin'," Vera said, shaking her head.
The audience erupted in laughter. Most had been prescribed daily medications to address psychiatric symptoms such as depression, anxiety, and psychosis.
"Now, let's get serious," she continued. "If you met me a couple of years ago, you would have seen me walking around like this ..."
Vera hunched her shoulders and stared at the ground.
"Overmedicated, no self-esteem, no self-worth, and — even more so — afraid."
Many audience members nodded.
"Afraid that if I walked into a social service agency they wouldn't help me with what I needed. I was afraid to make a move one way — to go back to work. I was afraid for another hospitalization after several times of being in the hospital for four, five, six months. My life was really changing for the worse until I became empowered. And then, I realized that for my recovery it was more important to help others.... Many people try to help themselves, and then help others, but my road was different. I needed to help others."
Vera was once, she continued, an "unruly mental patient" staging protests at her nursing home. She had been leading advocacy efforts for the past decade, and ultimately became a peer provider at Horizons, an urban psychosocial rehabilitation organization that served more than six thousand mental health service users that they called "members" in the local metropolitan area. With the support of Horizons, Vera recently had applied for and received a grant to run her own, peer-led treatment program, the Peer Empowerment Program — also known as PEP.
On that particular day, Horizons CEO, Steve, had asked Vera to give a speech encouraging other members to seek organizational leadership roles. For Steve and the hundreds of members in the audience that day, Vera was an innovator, and a strong role model for recovery. PEP's radical, groundbreaking feature was that "peers" directed and offered the services — which Vera jested later, "let the lunatics run the asylum." Vera explained to the audience how peers shared many of the same extraordinary life experiences as the members, which she believed made them excellent mental health care providers for members.
"They, too, have been homeless, hospitalized, and alone."
Having peers direct one's care, advocates like Vera believed, was different from having the usual, college-educated "case managers" because "professionals" could never understand how it felt to receive a psychiatric diagnosis or experience symptoms. Peers, they argued, would be more willing to give a member control of their own lives because they had made their own choices and were now living "in recovery." They had taken charge of their own lives and found fulfillment.
Partners in Change
Isaac was one such peer who provided mental health services to others under Vera's leadership at PEP. Isaac was a middle-aged, African American war veteran who struggled with the "dual diagnoses" of alcoholism and schizophrenia. He had heard voices and experienced visions and thoughts inserted in his head that seemed foreign to him. Alcohol dulled his symptoms, and he became an alcoholic. During a low point, Isaac lost custody of his beloved child to his ex-wife and had to live in a nursing home. Then, one frigid night, Isaac escaped through a defunct fire exit and bought a bottle of Jack Daniels — his favorite.
Shortly after he began to drink, Isaac collapsed. He nearly froze to death. Fortunately, a passerby found him and called the police. After being hospitalized for frostbite and liver problems, he entered another residential treatment program for people with dual diagnoses of serious mental illness and substance abuse. Many people with serious psychiatric disabilities are offered these kinds of "revolving-door services," services that do not adequately help people recover and then open the door to let them back in again when they relapse.
Isaac continued to be a revolving-door mental health service user until he attended a workshop at Horizons led by Priscilla Ridgway.
"This woman changed my life," Isaac told me. "She saved me."
Priscilla Ridgway is the author of the popular guide Pathways to Recovery(2002). In the book, she described herself as "an accidental mystic, a person with a traumatic brain injury and someone who has struggled with depression and 'PTSD,'" which gave her "the gift of greater depth of awareness." After taking one of her classes at Horizons, Isaac was able to enter his own version of recovery. He stayed sober and eventually moved into his own apartment, regained some custody of his child, and engaged in part-time work at Horizons as a peer mental health service provider.
At one point during my research for this book, Isaac and I had the opportunity to see Priscilla Ridgway speak to a very large conference for peer leaders. She came on stage and began to speak but then stopped midsentence.
"Oh, my," she said, and put her hand to her mouth. "Excuse me, but I just saw someone I met several years ago in a workshop I was giving, and I am so amazed by the individual I am seeing. He has transformed, I can see, and this is a wonderful moment. Isaac, you look wonderful, and it's so moving to see you out there. Obviously, you are doing really well in your quest for recovery."
"I am so thrilled," she said, wiping away tears, "that we sit here as equals today, partners in changing the lives of others."
What Is Recovery?
Isaac's story is not unusual. During the research for this book, I met many people who described themselves as "in recovery" from serious psychiatric diagnoses like schizophrenia and bipolar disorder. They typically repudiated a biomedical focus on diagnoses, symptoms, and functioning, which they considered demeaning. No one appreciates being called "low-functioning" or "sick" or being told that they have an illness "worse than cancer," they told me. I knew from my own experiences that this could be very frightening. When my own brother was first diagnosed with schizophrenia at a very young age, I had a terrible nightmare that he had swallowed nails. I knew they would tear him apart inside, and there was nothing I could do.
Our fear of a diagnosis of serious mental illness in American culture is very strong. The experience of mental illness can seriously disrupt a person's life narrative and our expectations for them. If this disruption continues unchecked, it can impair a person's sense that they can move forward, be accountable, and live a meaningful life.
However, when I asked people in recovery about their lives, they spoke in invigorating ways about their extraordinary experiences. They talked about "transformation" and "healing" from "serious emotional distress" (Deegan 2002; Fisher 1993). They had meaningful lives, jobs, and children. I met authors, artists, psychologists, psychiatrists, and lawyers, all contributing members of their home communities, all in recovery from serious mental illness.
In the research literature, "recovery" typically referred to a reduction in symptoms and a return to the life one might have been expected to lead if one had never become ill — or possibly even a better life. The Vermont Longitudinal Study, for example, showed that with some community-based supports, two-thirds of "chronic patients," continuously hospitalized for six years or more, could live independently in the community (Harding, Zubin, and Strauss 1987). At least one-third of study participants returned to the same kind of life they had lived before, if not a better life. In a complementary study, hospitalized patients who did not have positive supports had worseoutcomes upon release into the community (DeSisto et al. 1995). Another review of ten studies of recovery found up to one-third of subjects achieving a full recovery (Davidson and McGlashan 1997:37). International research suggested similar findings, with some countries having higher rates of recovery than others, especially "non-Western" countries (Calabrese and Corrigan 2005; Hopper 2007b). Such accounts pose difficult questions — if recovery is possible, how can we better promote recovery?
People in recovery have been talking about this for decades. Increasingly, you can read intimate accounts of people's experiences of extreme mental states and restoration. Professor Gail Hornstein has compiled a list of first-person narratives of illness and recovery available on her website, now numbering 700+ references. In addition, numerous stories are on the MindFreedom (www.mindfreedom.org) and Schizophrenia.com websites. Some narratives I personally enjoyed included Bassman 2001; Beers 1960 ; Deegan 1993; Fekete 2004; Fisher 1994; Henderson 2004; North 1987; Nudel 2009; Saks 2007; Schiller and Bennet 1996; Steele and Berman 2001; Tsai 2002; and Walsh 1996. And you can meet an increasing number of people in recovery — just attend their lectures and conferences, read their books, and watch their TED talks. I tried this myself because as a researcher I wanted to know how people managed to recover when so many others became caught in what is widely regarded to be a fragmented, inadequate, revolving-door mental health care system. And as a big sister, I wanted to know how to best help my brother.
Recovery advocates, I found, shared many of my questions. They demanded that the general public reconsider how best to handle mad experiences (Clay et al. 2005; Mead and Copeland 2000) and help people diagnosed with mental illnesses find meaning in life (Copeland 2008; Ridgway et al. 2002). They envisioned recovery as a growth process (with room for setbacks) rather than the attainment of predetermined benchmarks. Recovered psychologist Deegan (2002), for example, described recovery as "a transformative process in which the old self is gradually let go of and a new sense of self emerges." In a similar vein, Anthony (2000:159) described recovery as a:
deeply personal, unique process of changing one's attitudes, values, feelings, goals, skills, and/or roles. It's a way of living a satisfying, hopeful, and contributing life even within the limitations caused by the illness. Recovery involves the development of new meaning and purpose in one's life as one grows beyond the catastrophic effects of mental illness.
This definition resonated with another oft-used definition of recovery by Isaac's own Priscilla Ridgway:
Recovery is a process, a way of life, and attitude, and a way of approaching the day's challenges. ... The need is to meet the challenge of the disability and to reestablish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration is to live, work, and love in a community in which one makes a significant contribution. (Ridgway et al., 2002:5)
Anyone could achieve recovery — a meaningful life and the ability to live, work, and love in the community — advocates claimed, with the right kind of recovery-oriented institutional support. Institutions could foster, for example, an attitude of hope, humor, mutual respect, humility, cooperation, trust, and love between service users and providers (Anthony 2000; Fisher and Chamberlin 2004; Mead and Copeland 2000). These were lofty goals, but there was energy behind the conviction that services could become more recovery oriented. As evidence mounted that recovery was possible, recovery advocates — including clinicians, families, and peers — encouraged hope and action for people seeking recovery rather than despair and resignation (Deegan 2003; Fisher and Chamberlin 2004; Frese 1998; Ragins 2002).
As the turn of the millennium approached, demands for reform gained potency, and advocates' core concepts of empowerment, selfdetermination, and freedom of choice informed seemingly radical public recommendations for reform, such as President Bush's influential Presidential New Freedom Commission (Jacobson and Curtis 2000; PNFCMH 2003; SAMHSA 2006). Recovery advocates delivered concrete assistance, such as publishing and disseminating self-help programs and operating "technical assistance centers" for mad advocacy and peer services. They also staged protests, celebrations, and conferences around the globe, working tirelessly to demand more humane treatment (Chamberlin 1990; Cohen 2001; Jacobson 2004; Lewis 2006; Rissmiller and Rissmiller 2006).
I attended many of these events, looking for answers. And I found that, for the first time in two centuries, people diagnosed with serious mental illnesses were transgressing the highly contested social, moral, and legal boundaries that prevented them from having a voice in their own lives — transgressions that may have provoked their confinement in an earlier age (Goffman 1961). Their efforts — at times supported by family members, professionals, and other advocates (e.g., disability rights) — won them credibility with state and federal mental health policymakers and provoked proposals for recovery-oriented reform.
This naturally prompted the question — what would be the rules, roles, and relationships of a recovery-oriented mental health care system? An ethnographic perspective on state-level, recovery-related reform in Wisconsin is well-documented in another book and is not necessary here (Jacobson 2004). But based on the efforts of advocates and states like Wisconsin, in 2004, President Bush's New Freedom Commission recommended that the American mental health care system shift toward using recovery-oriented services. The commission's recommendations were unfunded, and states had to enact them on their own, but some — cue Horizons — would try.
In this moment, "recovery-oriented services" meant minimizing the seemingly toxic impacts of the traditional mental health system. The "traditional" mental health system, the commission found, did not offer enough independence, empowerment, and hope for service users to transform their everyday lives. The traditional model accentuated principles of rehabilitation: stabilize the illness, reduce the negative impacts of illness, and help clients avoid rehospitalization. In contrast, the so-called recovery model accentuated the positive (see Appendix I). It suggested that people's goals should include being reintegrated into a community of one's own choosing in a way that was meaningful to them. Recovery advocates also argued that a person with lived experience that provides services — a "peer — might offer people the opportunity to try and fail, make mistakes, and learn from them, which many thought was what users most needed to recover.
Policymakers were perhaps also motivated by the imagined cost-savings of people living (and working) in recovery. Around this time, treating a "chronically ill" adult with severe mental illness cost an estimated average of $19,900 per year per person (Harwood 2000). If people with psychiatric disabilities could be put back to work and stop receiving social security disability incomes (albeit a meager stipend) and Medicaid (public health care insurance plans, not then standard in the United States), some thought they would pose less of a fiscal burden. A recovery-oriented mental health system, proponents argued, would produce citizens in recovery rather than expensive, chronic mental patients (Solomon and Stanhope 2004). But first, everyone needed to identify how the system would produce recovered public mental health service users.
Horizons administrators, guided by Steve, the new CEO, thus began to develop and implement an organizational philosophy of recovery-oriented care — a philosophy, I discovered, that was deeply informed by US cultural values and expectations. Part of Steve's plan was to involve peers like Vera — people in recovery — to spur the revolution from the ground up. He also had "shaken up" organizational leadership from the top-down. His new Director of Recovery, a peer named Melanie, had put together the event where Vera was speaking. Melanie openly disclosed her experiences as a "recovered" consumer-turned-PhD as part of her job description. He also asked Melanie to help Vera give a speech to the members that would motivate them to take charge of their own treatment plans, and let people know that the organization needed to head in a new direction for legitimate reform.
Excerpted from Recovery's Edge by Neely Laurenzo Myers. Copyright © 2015 Vanderbilt University Press. Excerpted by permission of Vanderbilt University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
A Note on Contested Terms xiii
1 Orientation 1
2 No Direction Home 15
3 Step One: Take Your Medications 57
4 Step Two: Self-Advocate 87
5 Step Three: Work for Intimacy 121
6 Recovery's Edge 141
7 Over the Edge 155
Appendix: Comparison of Traditional and Recovery-as-Advocated Care 165