Narrative in Social Work Practice: The Power and Possibility of Story 9780231544726

Table of contents :
Contents
Foreword
Preface
Acknowledgments
Introduction
Part I. Writing as Discovery and Healing
1. Stuck
2. Garden at Vaucresson
3. Another Kind of Witnessing
Part II. Narrative Social Work with Individuals and Families
4. The Reluctant Storyteller
5. Grace Notes: Singing in Marion’s Hospital Room
6. One Family’s Experience of Falling Out of Health
7. Scheherazade
8. Sharing a Narrative Meal
Part III. Narrative Social Work with Groups
9. Storytelling and Listening
1. I Like Dancing and Singing and Prancing and Flinging
11. Jesse’s Story
12. With Every Story We Rise
Part IV. Narrative Social Work in Education, Supervision, and Research
13. Transnational Parenting
14. The Worker–Mentor Story
15. Narrative Research a
16. Reading and Writing Really Are Fundamental
Conclusion
Contributors
Index

Citation preview

NARRATIVE IN SOCIAL WORK PRACTICE

Narrative in Social Work Practice THE POW ER AND PO S S I B I L I T Y O F S TO RY

edited by

Ann Burack-Weiss, Lynn Sara Lawrence, and Lynne Bamat Mijangos

c o l u m b i a u n i v e r s i t y p r e s s  n e w y o r k

columbia university press

Publishers Since 1893 New York Chichester, West Sussex cup.columbia.edu Copyright © 2017 Columbia University Press All rights reserved Library of Congress Cataloging-in-Publication Data Names: Burack-Weiss, Ann, editor. | Lawrence, Lynn Sara, editor. | Mijangos, Lynne Bamat, editor. Title: Narrative in social work practice : the power and possibility of story / edited by Ann Burack-Weiss, Lynn Sara Lawrence, and Lynne Bamat Mijangos. Description: New York : Columbia University Press, 2017. | Includes bibliographical references and index. Identifiers: LCCN 2016045623 | ISBN 9780231173605 (cloth : alk. paper) | ISBN 9780231173612 (pbk. : alk. paper) | ISBN 9780231544726 (e-book) Subjects: LCSH: Social service—Practice. | Social workers. | Storytelling—Social aspects. | Narrative therapy. Classification: LCC HV10.5 .N34 2017 | DDC 361.3/2—dc23 LC record available at https://lccn.loc.gov/2016045623

Columbia University Press books are printed on permanent and durable acid-free paper. Printed in the United States of America Cover design: Julia Kushnirsky Cover image: Édouard Vuillard, Garden at Vaucresson (1920). Metropolitan Museum of Art, New York

contents

f o r e w o r d  IX

Rita Charon p r e fa c e : a c a r n i va l o f p o s s i b i l i t i e s  XIII

Ann Burack-Weiss a c k n o w l e d g m e n t s  XVII



Introduction: Many Ways of Knowing

Ann Burack-Weiss

1

part i Writing as Discovery and Healing13 1



Stuck: An Intersection of Stories

Lynne Bamat Mijangos

15

2



Garden at Vaucresson: It’s Not All a Bed of Roses

Lynn Sara Lawrence

30

3



Another Kind of Witnessing: Narrative Medicine and the Trauma Therapist

Kristen Slesar

45

part ii Narrative Social Work with Individuals and Families67 4



The Reluctant Storyteller: The Use of Self in Narrative Social Work

Millet Israeli

69

contents

vi

5



Grace Notes: Singing in Marion’s Hospital Room

Constance H. Gemson

79

6



One Family’s Experience of Falling Out of Health: A Mother Remembers; a Daughter Reflects

Jessica Greenbaum and Isabel Marcus

85

7



Scheherazade: The Social Worker as Interpreter of Social, Cultural, and Familial Maladies

Judith Levi

97

8



Sharing a Narrative Meal: The Therapeutic Use of Narrative with Older Adults

Lauren Taylor

108

part iii Narrative Social Work with Groups125 9



Storytelling and Listening: Combating the Stigma and Secrecy of HIV/AIDS in Kenya

Benaifer Bhadha

127

10



I Like Dancing and Singing and Prancing and Flinging: Using Poetry in Dementia Care

Mary Hume

144

11



Jesse’s Story: A Mother’s Voice—a Social Work Journey

Heidi Mandel

156

12



With Every Story We Rise: Narrative Means to Social Justice Ends

Nora McCarthy and Rachel Blustain

168

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part iv Narrative Social Work in Education, Supervision, and Research185 13



Transnational Parenting: The Hidden Costs of the Search for a “Better Life”

Christiana Best-Giacomini

187

14



The Worker–Mentor Story: Narrative Approaches in Social Work Supervision

Alicia Fry

201

15



Narrative Research: Discoveries in Listening to Clinician-Scholars’ Experiences of Working Across Trauma and Loss

Madelyn Miller

213

16



Reading and Writing Really Are Fundamental: How Stories Shape Professional Development

Mary Sormanti



234

Conclusion: On Narrative Competence and Narrative Humility

Ann Burack-Weiss, Lynn Sara Lawrence, and Lynne Bamat Mijangos 247 l i s t o f c o n t r i b u t o r s  251 i n d e x  255

foreword



r i ta c ha r o n

I am honored to invite readers into this extraordinary book. As colleague, student, and/or teacher of many of the authors brought together in this collection, I have been surprised and challenged and moved by what I have experienced in reading it. Amid the widely varying kinds of social work practice and teaching represented here, the reader undergoes that which the chapters hold in common: the fierce joy of helping a person to recognize the meaning of the tale he or she tells, the narrative humility of opening to the mystery of the other, the reflected trauma of witnessing the suffering of others, and the soft echoes of self and other within the immersive listener. A mother of two young children in Grenada makes the anguishing choice to leave her young children behind with a friend and move to New York to raise money for their education. Senior clinicians working in trauma therapy speak searchingly to a social worker who invites their deep reflections on what they have witnessed in their work. A nurse becomes a social worker once she realizes how her own autobiography of stoic and unspoken childhood losses demands and deserves a life of telling and listening. A suicidal young girl, abused by family and entrapped in the foster care system in the Bronx, wordlessly experiences the commitment of her social worker by being bodily held—for hours—to prevent her from hurting herself and others. These are just a few of the stories given voice in Narrative in Social Work Practice: The Power and Possibility of Story. Each chapter opens powerful doors into rooms of meaning. Hidden from “ordinary” people—by which

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I mean those of us who are not social workers!—are visions of loss, injury, rage, and defeat, as well as resilience, triumph, beauty, and unconditional love. This is not a textbook of pathologies and diagnoses; what we have here is a testament to the dividends of revelatory narrative concepts and powerful narrative methods in the care of those seeking help. Through work simultaneously cognitive and affective, work that occurs at multiple strata of self, the contributing authors bring us into their worlds. No wonder these worlds remain hidden from passerby—old people dying at home alone, mothers whose children have been taken away from them and put into foster care, persons with dementia who have lost language, patients shocked by the sudden apparition of fatal cancer in their lives. It takes more courage than most can mount to look full in the face at the injury, injustice, and hurt that surround us all. And in the face of such hurt, the narrative methods not only described but also enacted here show the hope, the contact, and the universality of human experience that enables a hand to reach out—a universality that creates a bridge of dignity and recognition toward a future. Like a chorus that repeats after individual stanzas, common themes recur in these chapters. The use of the self as a social worker and the accompanying duty to map autobiographical terrains and climates are fundamental. Relational competence takes its place beside narrative competence as social workers comprehend the intersubjective contact necessary for their work and the immeasureable risks thereby entailed. Close reading and radical listening are hallmarks of this work, for skilled attention to language is a prerequisite of narrative practice; the close reader does not squander one word on the page, and the radical listener surrenders to the meaning-making of the teller rather than be deafened by his or her assumptions or biases. Limitless genres of narrative can be recruited into social work: songs, collectively written poems, explanations for religious rituals, self-disclosure, histories of national and international traumas, paintings, clinical interviews, spoken-word poetry, community storytelling are only some of the genres described in the following pages. Need for care spans systems ranging from the biological to the familial and political; unlike the narrowness of some disciplines of health care, narratively nourished social work responds to disease, poverty, injustice, and isolation with powerful means of recognizing and supporting personal and collective strength.

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As is the case in any narrative, this book’s form speaks as much as does its content. The chapters are organized into professionally meaningful subsections regarding social work as an autobiographical self-examination, work with individuals, work with groups, and the field’s commitment to training and research. Each part is preceded by a list of competencies deemed essential in the education of a social worker by the Council on Social Work Education (the national accrediting body for social work education) and the narrative means by which these competencies can be achieved. By aligning chapters with mainstream requirements for competency in social work, the editors signal the centrality of narrative practice to the field and the power of narrative practice in learning and teaching the absolutely essential aspects of the profession. These formal features of the book assert that the interpretive courage of individual authors, the creativity and selfknowledge called upon in working with clients, the reliance on rigorous concepts from narrative studies, and the beauty of the prose all contribute to the book’s overall claims: that narrative knowledge and practice saturate the lives of social workers and their clients, and that narrative acts alone can bridge the divides between social workers and their clients toward a theraputic, universal recognition of the human condition. Narrative in Social Work Practice will transform social work practice. It is both revolutionary in concept and loyal to social work traditions in spirit. It illuminates the social and personal dimensions that attract social workers to their work in the first place and proposes innovative ideas and methods that keep the practice forever new. The book further signals that narrative social work takes its place among a growing number of professions that value narrative and relational competence, such as oral history, narrative therapy, trauma therapy, narrative medicine, narrative psychiatry, palliative care, and dementia care. Recognizing one’s cousins helps to identify the self, and acknowledging this wider circle of narrativists in the human services not only sharpens the mission of narrative social work but also forms alliances that strengthen the narrative movement within each particular field. Together, is there anything we cannot accomplish in humanizing health care, in achieving social justice in our work, and in making the “caring professions” restorative and replenishing? As I close this book, I gaze again at Édouard Vuillard’s The Garden at Vaucresson on the cover. I see—because I have been mentored to see—the

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hidden along with the evident. I take in the garden’s lushness, the house’s open and closed shutters, the figures’ orientation toward one another. As I accept the invitation of Vuillard’s garden path, I make my way into both the beauty and the hazards that dwell within the painting and the book. I invite you to do the same.

preface

A CARN IVAL OF POSSIB ILITIES



an n bu r ac k-we i ss

By striving to do the impossible, man has always achieved what is possible. Those who have cautiously done no more than they believed possible have never taken a single step forward. m i k h a i l b a k h t i n , The Dialogic Imagination

s o c i a l w o r k e r s h av e a n a f f i n i t y for groups. It takes only a few who share a common purpose to attract others. So it was that, in 2011, a handful of social workers in New York City began meeting to discuss what changes might be possible in an increasingly problematic professional environment. We lamented the mechanization of social work; the digital revolution that reduced representation of client stories to check-off boxes; the related devaluation of the client-worker relationship; the unquestioned belief that a professional “use of self” requires leaving one’s specific talents and skills— the very talents and skills that fed the desire to spend one’s work life in the service of others—at the door. We also shared a belief that narrative practice had the potential to reverse the trend. Before long, our original group of gerontological social workers expanded to include a diverse collection of colleagues. The newcomers represented a variety of personal and professional backgrounds, practice settings, populations served, training, and experience in narrative methods. Several were graduates of the Program in Narrative Medicine at Columbia University or its affi liated workshops. Some used techniques from other academic or theoretical disciplines to inform their narrative approaches.

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p r e fac e

We spoke about how our unique groundings in such fields as music, poetry, art, psychoanalysis, oral history, and literary criticism were converted to creative narrative interventions with individuals, families, and groups— as well as ways they could enhance self-knowledge, self-care, social work education, and advocacy. We were all familiar with the pioneering work in narrative therapy and its therapeutic possibilities for individuals and families experiencing psychosocial difficulties (White and Epston 1990). We shared the belief system on which narrative therapy is based: the notion that alternative stories about the nature of individuals and society can be revealed through a helping process in which new ideas can be developed, new voices heard. Yet none of us were in mental health settings for which narrative therapy techniques were designed. Our narrative interventions took place with clients, students, and staff, who ranged in age from adolescents to older adults. Situations ranged from the personal to the global. Our work took place in hospitals and community centers, in classrooms and private homes, and in the privacy of our own thoughts. From Mumbai to Grenada to the island of Manhattan, our work cut a swath as wide as it was diverse. The carnival metaphor—created by the postmodern theorist Mikhail Bakhtin—is fitting to describe both the intent and the outcome of our efforts. Bakhtin wrote extensively about the carnival, specific occasions in the life of Renaissance communities, when the usual social hierarchies were upended and new personas were explored. The carnival symbolizes a place where individuals normally separated by hierarchical roles can interact in freedom and equality, where traditional ways of thinking and speech are shaken up, making room for a multiplicity of voices and meanings (Bakhtin 1968). Carnival “implies a change from principles of stability and closure to constant possibility,” in which multiple levels of meaning can be found (Elliot 1999, 130).Carnival participants could play with identities, reverse roles, speak, and hear new ideas. Creative energies were released. Anything was possible. For a time. Participants knew that the carnival would come to an end and the traditional order would resume. But if the carnival was not revolution, neither was it simple recreation. Ideas once spoken cannot be unspoken. Voices echo through time. Unfamiliar roles begin to feel comfortable. Possibilities emerge when one stands back from the usual way of doing things and considers new ways of responding.

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Much has been written about the egalitarian and freeing potential of carnival—and its lessons—though nothing perhaps as to the point or as relevant to the purposes of narrative in social work as the words of Bakhtin (1984, 110) himself: “Truth is not born, nor is it to be found inside the head of an individual person. It is born between people collectively searching for truth, in the process of their dialogic interaction” (emphasis Bakhtin’s). Social workers intuitively understand the view of Bakhtin. It is the jolt we receive when hearing our worlds described by those who view it through a different lens. It is the proverbial “breath of fresh air.” It is the power of story to change hearts, minds, and actions. We hope that the chapters in this book will open the door to dialogic imagination—inspiring conversation, awakening ideas, inspiring readers to embrace the “carnivalesque,” the possibilities of their professional lives.

references

Bakhtin, Mikhail. 1968. Rabelais and His World. Trans. Helene Iswolsky. Cambridge, MA: MIT Press. ——. 1984. Problems of Dostoevsky’s Poetics. Trans. Caryl Emerson. Minneapolis: University of Minnesota Press. Elliot, Shanti. 1999. “Carnival and Dialogue in Bakhtin’s Poetics of Folklore.” Folklore Forum 30 (1/2):129–139. White, Michael, and David Epston. 1990. Narrative Means to Therapeutic Ends. New York: Norton.

acknowledgments

“ i a m a s o c i a l w o r k e r .” Half a century has passed since I first made that declaration, and pride in my profession has only grown with the years. Seeing the pendulum of theory and practice swing back and forth—each time bringing part of the past along with it, each time moving the needle a bit forward—is one of the special rewards of a long career. So my first acknowledgment is to social workers who have published accounts of their work over the years. From those whose well-known names that grace the covers of textbooks to those who appeared but once in a journal. Each has left a legacy—none more so than Carol H. Meyer, with her professional wisdom and writerly grace. The path from concept to publication is long and often difficult. The reward comes from the people with whom we share the journey. I applaud the creativity of the authors whose work appears on these pages. I cherish my “Lynnies”—coeditors Lynn Lawrence and Lynne Mijangos—the finest of collaborators. I appreciate the unfailing support and good cheer of Jennifer Perillo and Stephen Wesley at Columbia University Press. Always and in all ways, I walk hand in hand with my dear family— Donna Nelson, Danielle Nelson, Jennie Rose Nelson, and Kenneth Weiss. And my beloved husband, Roy L. Weiss; his memory is a blessing. —Ann Burack-Weiss •

•

•

For years I listened to my father recount the hidden stories of patients revealed through radiologic exams. For years as a psychotherapist, I listened

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xviii

to the compelling and knotty stories of my own patients. But it wasn’t until entering Columbia University’s Program in Narrative Medicine that I became the teller through writing my own story. My profound gratitude to all who taught and nurtured me there, because everything I learned found its way into this book. In fact, this book owes its existence to the program. Special thanks to Rita Charon for her inspiration in creating it and her wizardry in the art of teaching close reading; to Murray Nossel and Paul Browde for the balletic duet of co-construction. To my other professors and fellow travelers on this incredible journey, thank you for the proof that “relations stop nowhere.” The vision for this book was Ann Burack-Weiss’s. Her optimism and spirit in welcoming to her table all the would-be writers that now grace the pages of this book was boundless. Thanks to Lynne Mijangos for her eagle eye and technological savvy. My deep appreciation goes to the writers who trusted me with their compelling stories and ultimately the writing process itself. My gratitude goes to Jennifer Perillo, our editor at Columbia University Press, who proved to be a fierce ally and a moderating influence. I thank my deeply missed parents, Dr. Lewis and Florence Lawrence, for a home fi lled with love, music, books, and X-rays—the grafts of interiority. To my brother, Jeff, for our “told and untold” stories. My gratitude to all my friends and family who lived this process with me. The wind beneath my wings will always be my husband, Michael, who read, reread, unfroze the keys of a groaning computer, cooked regularly, and sustained me with his good humor. —Lynn Sara Lawrence •

•

•

I wish to thank Ruth Hungerford Long† and Kathryn Hungerford Swanson†, who told stories; Elizabeth Long Bamat†, Catherine Bamat Johnson, and Anne Bamat Mitchell, who listened to mine; Ann Farie and Barbara Conradt, who watched over me in social work supervision; Charlie Solky† and Ray Babineau, who listened in therapy; clients young and old who asked me to watch and listen; Elaine Edelman, Mary Gordon, Lucy Grealy†, Nellie Hermann, Judith Kitchen†, Phillip Lopate, Honor Moore, and Robert Polito, who mentored my writing; first readers Joel Bergman, Jane Buchanan, and Carol Goldberg; Rita Charon, Craig Irvine, and Maura Spiegel, who teach close reading and reflective writing, value interdisciplin-

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xix

ary approaches to care, and model respect for singular voices; chief correspondent Rachel Robb Tatge; narrative circle Arlene Davidson†, Ann Farie, Charlotte Harvey, Nancy Liebenstein, Lupita Mijangos, Marta Mijangos, JoAnne Pedro Carroll, and Elizabeth Schnucker; Jennifer, Mark, and John Mijangos, who listened and told stories on my lap; Theo and Kate Spencer and Maude and Jack Mijangos, who go on asking for stories. My most profound thanks goes to my husband, Luis Mijangos, who is slow to tell and always quick to listen. —Lynne Bamat Mijangos

NARRATIVE IN SOCIAL WORK PRACTICE

Introduction M AN Y WAYS OF K NOW ING



an n bu r ac k-we i ss

A historic and defining feature of social work is the profession’s focus on individual well-being in a social context and the well-being of society. Fundamental to social work is attention to the environmental forces that create, contribute to, and address problems in living. n at i o n a l a s s o c i at i o n o f s o c i a l w o r k e r s , Code of Ethics

The boundaries of our profession are wide and deep. We are concerned about the nature of our society, about social justice, and social programs. We are concerned about human associations, about communities, neighborhoods, organizations, and families. We are concerned about the life stories and the inner experiences of the people we serve and about the meaning to them of their experiences. No one way of knowing can explore this vast and varied territory. a n n h a r t m a n , “Many Ways of Knowing”

We not only operate within a narrative environment, but are part of the narrative environment of others. This dual positioning lays on us, I believe, an ethical obligation to take care. When we are invited onto the holy ground of other people’s lives/stories, then it is important to remove our hobnail boots. c l i v e b a l d w i n , “Living Narratively”

this collection begin with one epigraph. This introduction has three—the better to underscore the challenge of the social work profession’s broad mission of service, to reflect the equally broad most of the chapters in

introduction

2

base of knowledge needed to fulfill that mission, and to indicate the unique contribution of narrative to the endeavor. s o ci a l wo rk i s m u lti s to ri e d

The story begins with the client. Today’s clients tell many of the same stories that were told by clients in the early days of the profession, more than a century ago. Food, clothing, and shelter are still hard to come by. Physical and mental illness abound. Drugs and alcohol continue as potent scourges of individuals and families. The care needs of young and old remain underaddressed. Families and communities continue to struggle to fi nd common cause amid difference. And beneath it all, the toll of living in a world that often feels inhospitable to one’s deepest needs seems to have always been with us. The story is heard by a social worker, who brings her own stories into the room. The social worker’s stories contain the idiosyncratic circumstances of her life, the home and community from which she comes, and the subsequent life experiences that shape her views. They also include avocational interests, such as music, art, history, poetry, and science. All of these inevitably affect her “co-construction” of the story (the ways in which she retells the story in the written and oral venues open to her). Then there are the origin stories that are learned at schools of social work, the legacy of the great social work theorists of the past—with thinkers in allied disciplines and professions—who have made major contributions to the body of knowledge, skills, and values on which the profession draws. Finally, there are the stories of the practice settings in which social workers are employed—deeming which elements of the client story are relevant to agency mission. These select pieces of data tell funders and regulators what they want to know, presented in a digital form that obliterates all else from the telling (including the worker’s role in the process). A reductive tendency—of which digitalization is both a cause and an effect—is not unique to social work. It is reflective of society’s stories, the dominant narratives known as “public opinion”—society’s views on who clients are, what they need, and how best to provide for them. The ensuing narrative affects how social workers listen to their clients, what they listen for, how they think about what they hear, and how they retell client stories in case charts, professional conferences, and advocacy

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efforts. Most of all, they affect what happens next—in the client’s life and in the larger society. w h os e s to ry i s i t any way ?

The history of social work in the United States can, in fact, be told through the profession’s response to client stories. In the early years of the twentieth century, when “friendly visitors” (volunteers from the middle and upper classes) visited the homes of the poor, they brought with them lay attitudes and judgments and sought to substitute their own stories for those of their clients. In so doing, these visitors imparted the prevailing societal consensus on the importance of hard work, sober living, and moral rectitude as a remedy for all manner of personal and social ills. The ensuing professionalization of social work, which reached its apotheosis during the Progressive Era, was transformative, heralding a new way of listening and responding to client stories—one that replaced judgment with a search for better ways to help. Mary Richmond and her followers, seeking intellectual rigor as an antidote to lay attitudes, looked to the medical profession for guidance, adapting their model of diagnosis and treatment of the physical to the psychosocial. Client stories were no longer viewed as evidence of moral failings; rather, they prompted an attempt to understand the roots of the problems and to apply the best of social work knowledge to their resolution. Jane Addams ([1935] 2010) and her colleagues chose to live within a poor immigrant community in Chicago to personally experience the daily stressors of their neighbors’ lives. Client stories were used to develop a host of community programs as well as to spur advocacy efforts that received national and international recognition. The Great Depression brought many more Americans into the social welfare arena—individuals who had no previous need to ask for help from others and who often felt a loss of pride in doing so. During this time, two social workers emerged who shared the vision of the “individual well-being in a social context”—as promulgated in the current mission statement of the profession. Charlotte Towle (1945) wrote for the many untrained workers hired to administer the social programs of the New Deal. The title of her slim volume, Common Human Needs, carries its message: more unites clients and

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introduction

social workers than separates them. Client stories reveal that they have the same needs, desires, and emotions as those who listen to them. The worker’s understanding of a shared humanity as a prerequisite for the helping relationship has rarely been so eloquently expressed. Bertha Reynolds (1934), whose work and thought began in the 1930s and spanned almost a half century thereafter, was a student of both psychoanalysis and Marxism—a breadth of knowledge and values that informed her understanding of the relationship between “private troubles and public issues,” a movement from case to cause that continues to this day. By the 1940s, the psychoanalytic works of Sigmund Freud and Otto Rank had become widely known in the field of social work. Appreciation for unconscious motivations for behavior and recognition of the many childhood issues that persist into adulthood had an irresistible appeal to the profession—resulting in what was later known as the “psychiatric deluge” (Field 1980). Two strands of thought then emerged: the “diagnostic” Hollis (1964) and Hamilton (1951) followed Freud, and the “functional” Taft and Robinson (Dore 1990) followed Rank. Both strands were expanded in the work of other theorists throughout the early 1960s. The client’s story now revealed many heretofore unrecognized layers of meaning, which required new approaches. Literature of the time reflects the foundation of each school and the vehemence with which each was argued. Many of the initial differences were subsumed by history, but many insights, including the emphasis on the power of the helping relationship, endure. The 1960s were a time of societal revolution and, as always, social work both reflected and contributed to the zeitgeist. A powerful rejection of psychological approaches, a call to “put the social back in social work,” was invoked in the literature and in schools of social work as group work and community organization gained ascendance. The client’s story, once again, was being linked to the cause of achieving social and racial justice. Client stories endure. Social work’s responses change—while in many ways remaining the same. From the vantage point of the twenty-first century, one can see vestiges of each era discarded, others continuing to inform and edify. It is in this territory that narrative stakes its claim.

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t h e u n e x p e c te d c o ns e q u e nc e s of t e c hn o lo gy

We are now faced with a challenge unknown to previous generations of social work: the increasing mechanization of practice. Well into the late twentieth century it was possible to pick up a case record and receive an impression of the client, the worker, and the helping process. The reader could be aware of a co-construction—of the client’s story fi ltered through the worker’s consciousness—while simultaneously appreciating the unique essence and voice of the person whose name was on the cover. The old method of recording was far from ideal. Overly long, often lacking specificity, and sometimes rendering unfounded judgments, it did not provide sufficient information for regulators and funders. Replacement by a digitalized form—consisting of check-off boxes and single written lines— rectified these problems while creating others. The form required the social worker to become a reverse alchemist, turning the gold of client stories into hard beads of computer-ready data. Needs in column A were matched to services in column B. It was now possible to read through an entire case record and receive no sense of the person whose life it purported to represent. Social work form no longer followed the social work function. And, slowly, social work function began to follow the form. When the client’s sense of his past or hopes for his future have no place on a form, it may seem less important for a social worker to inquire about them. When the human connection between the client and a caring, skilled worker is no longer of interest to funders and administrators, it may seem less important to cultivate helping relationships. In fact, the role of the worker, the ways in which his or her “professional use of self” contributes to or detracts from an intervention’s usefulness, is often overlooked. The change—and the backlash it engenders—is not unique to social work. It heralds a societal change, as teachers resist “teaching to the test” and social workers resist “practicing to the form.” One example of the unintended consequences of multiple narratives is clearly evidenced in the gerontological practice of today. Society’s concerns about the financial burdens of elder care are reflected in policies designed to alleviate the problem. These, in turn, result in funding initiatives, which in turn result in agency procedures, which in turn require that social workers limit data collection to care needs and service effectiveness. The result is a representation of older adults in which all that contributes to their

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individuality, their humanity, and their potential contribution to “the well-being of society” is eliminated. moder n i s m and p o s tm o d e rni s m in c o n t e m po r a ry s o ci a l wo rk p rac ti c e

“Modernism” dates to the eighteenth century (known as the Enlightenment), a time when logic, reason, and analytic rigor were seen as the route to knowledge about individuals and society, which included a belief that there is a singular “truth” about any situation, that progress toward that truth is linear and based on what has gone before. Elements of a modernist worldview have held sway over the helping professions—including social work— ever since (Lyotard 1979). The current emphasis on “evidence-based practice”—in which the practitioner bases his or her approach on what research has determined was effective in the past—is a direct descendant of Social Diagnosis (Richmond 1917). And, as the social sciences of the mid-twentieth century turned away from descriptive studies in favor of rigorously designed quantitative research, social work followed suit. Postmodernism is an explicit rejection of many of the precepts on which modernism is founded. The rejection was famously posed by C. Wright Mills (1959), in a book aptly titled The Sociological Imagination. He questioned the value of sociological studies of the time, quantitative studies and theoretical analyses that sought to identify one encompassing story (what he called “grand narrative”) to explain and order human behavior. His argument—for recognition of the reciprocal interaction of individuals and their worlds, an honoring of multiple voices and views—combined with other nascent movements of the time to form a powerful counterpoint that continues to be built upon by subsequent theorists. Postmodernism accepts that there is much in life that is unknowable, and directs its efforts toward accepting and understanding ambiguity. It rejects a prescriptive set of rules, in favor of a process of discovery. Postmodernism accepts that an “objective” view of anyone or anything is not possible, that researchers and practitioners cannot help but view the work they do through a personal lens—a lens that shifts with mood and circumstances (see Orcutt 1990; Siporin 1985; and Weick 1987).

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t h e n a r r ati ve p e rs p e c ti ve

Narrative is an overdetermined perspective in social work, its mid-twentiethcentury roots embedded in the convergence of many strains of postmodern academic thought—all of which contributed to what has been described as the “tricky and unsettling transition from modernity to postmodernity” in social work (Irving and Young 2002, 19). The contributions were as much a result of societal changes as of the work of academics. By the 1980s, it had become evident that personal narratives had the power to change the grand narratives of society. The expert opinion that had defined who women or African-Americans or gay people were and what they could achieve had crumbled in the preceding two decades. The media were fi lled with individual stories that demonstrated unrecognized potential, and public opinion followed. Revolutionary movements of the late twentieth century—increasing understanding and expanding rights of previously underappreciated and underserved populations—were a direct result of alternative narratives given voice. In truth, the belief system now termed “postmodern” (that is, understanding that the client–worker relationship is an essential ingredient of the helping process, having respect for the individual story, and linking an individual story to larger social concerns) has been a part of social work thinking since its earliest days. What has changed is the unquestioned belief in the “worker as expert”—an overt recognition of client strengths and the client’s ability to act on his or her own behalf if given the opportunity to do so. Fook (2002, 14) succinctly states the case: “The allowance for changing subjectivities and identities represents a little more of the complexity of human life, and the way in which living is mediated continuously by context. This may allow us to match our understanding of people’s lives more clearly with their own perceptions and experience.” As the years passed, social work theorists sought a broader, more encompassing perspective on social work practice, and textbooks followed suit. Narrative Means to Therapeutic Ends, by Michael White and David Epston (1990), was the earliest—and arguably the most influential—of emerging texts. Through several later editions, it has offered mental health professionals examples of how children, adults, and families who are experiencing problems with psychosocial functioning can benefit from composing

8

introduction

alternative stories of themselves and their lives, stories that focus on strengths and potentials rather than on deficits and limitations. In Reading Foucault for Social Work, Chambon and Epstein (1999) illustrate ways in which the philosophy of the French social theorist Michel Foucault challenges traditional views of practice. Foucault contrasts “the multitudinous truths of life” with previously unquestioned beliefs about such subjects as sexuality and surveillance, and alerts readers to the societal consequences of “expert opinion.” This provocative, original text on the nature of power continues to contribute valuable ideological insights. Abels and Abels (2001), Paquin (2009), and Freeman (2011) broadened the idea of narrative, showing applicability to a range of populations, settings, and problems, and often citing practice examples to buttress theory. However, it was not until Baldwin (2013) wrote Narrative Social Work: Theory and Application that the wide-ranging implications of ideas first set forth in Reading Foucault for Social Work were recognized. Baldwin examines narrative relevance to social work values and ethics and examines how a narrative understanding of the “self” is understood in social, cultural, and political contexts. n a r r at i v e i n alli e d d i s c i p li ne s an d pr o fe ssio n s

The work of other professions and academic disciplines has greatly enhanced social work’s understanding of the narrative perspective. Qualitative research, for years dismissed as “anecdotal evidence” by researchers wedded to quantitative methods, is now receiving overdue recognition. In Narrative Methods for the Human Sciences, Catherine Kohler Riessman (2008) draws from the fields of linguistics, anthropology, and sociology. Her translation of the insights of these disciplines into rigorous tools of narrative analysis—as well as her consideration of the ethical issues attendant to qualitative research—made a significant contribution to discourse in the field. The field of narrative medicine has had an indelible effect on all the helping professions—none more so than social work. Many social workers (including several whose work is included in this book) are graduates of the program or of the workshops that spread the philosophy nationally and internationally. Rita Charon, an internist and literary scholar, is the founder of the Program in Narrative Medicine at Columbia University and the groundbreak-

introduction

9

ing author of its essential literature. Charon (2001) defines “narrative competence” as “the ability to acknowledge, absorb, interpret, and act on the stories and plights of others.” In Narrative Medicine: Honoring the Stories of Illness, Charon (2006) expands on the concept. Her seminal work draws on the field of medical humanities but also reaches beyond it, providing concrete methods through which its goals can be achieved. Several of these narrative methods—among them, close reading and reflective writing, the parallel chart, co-construction, and witnessing—are exemplified in this collection. t h i s bo o k and i ts au th o rs

This collection can be called “second generation” in that it deviates from previous books on narrative social work in three ways. First, it moves beyond the theory and practice examples of earlier books to take readers into the consciousness of the social worker/author who reflects on the origins and results of her narrative approach—trying to see the world through the eyes of an “other” while recognizing that her view will necessarily be clouded by the world as she sees it, retelling the tale while recognizing that the reader will bring her own worldview into its understanding, knowing that the elusive, multivalent story that emerges is but one possible thread of an important tapestry of meaning. Second, the chapters suggest ways in which social work can achieve its mission of linking individual well-being to the well-being of society. Small changes in the present provide openings for larger changes in the future. Each cut into a “one-size-fits-all” approach, each attempt to pay closer attention to clients, to more fully use ourselves, and to explore new ideas about how to help advances the dialogue. Finally, the chapters demonstrate nontraditional ways in which Council on Social Work Education competencies can be achieved. Each chapter of the book demonstrates one or more core competencies and practice behaviors as well as the narrative methods used to fulfill them. Narrative in Social Work Practice spans populations and fields of practice. The narrative methods described and discussed extend from the personal to the global. Together they provide a cornucopia of strategies, suggesting that whoever she is, wherever in the system of services she may be placed, the social worker has the opportunity to use herself in new and creative ways.

10

introduction

references

Abels, Paul, and Sonia L. Abels. 2001. Understanding Narrative Therapy: A Guidebook for the Social Worker. New York: Springer. Addams, Jane. (1935) 2010. Twenty Years at Hull House. Reprint, New York: Signet Classics. Baldwin, Clive. 2013. “Living Narratively: From Theory to Experience (and Back Again).” Narrative Works: Issues, Investigations and Interventions 3 (1): 98–117. Chambon, Adrienne, and Laura Epstein, eds. 1999. Reading Foucault for Social Work. New York: Columbia University Press. Charon, Rita. 2001. “Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust.” JAMA 286 (15): 1897–1902. ——. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Dore, Martha M. 1990. “Functional Theory: Its History and Influence on Contemporary Social Work Practice.” Social Service Review 64 (3): 358–374. Field, Martha Heineman. 1980. “Social Casework and the ‘Psychiatric Deluge.’ ” Social Service Review 54 (4): 482–507. Fook, Jan. 2002. Social Work: Critical Theory and Practice. London: Sage. Freeman, Edith M. 2011. Narrative Approaches in Social Work Practice: A Life Span, Culturally Centered, Strengths Perspective. Springfield, IL: Charles Thomas. Hamilton, Gordon. 1951. Theory and Practice of Social Case Work. 2nd ed. New York: Columbia University Press. Hartman, Ann. 1990. “Many Ways of Knowing: In Search of Subjugated Knowledge.” Social Work 37: 483–484. Hollis, Florence. 1964. Casework: A Psychosocial Therapy. New York: Random House. Irving, Allan, and Tom Young. 2002. “Paradigm for Pluralism: Mikhail Bakhtin and Social Work Practice.” Social Work 47 (1): 19–29. doi:10.1093/sw/47.1.19. Lyotard, Jean François. 1984. The Postmodern Condition: A Report on Knowledge. Minneapolis: University of Minnesota Press. Mills, C. Wright. 1959. The Sociological Imagination. London: Oxford University Press. Orcutt, Ben Avis. 1990. Science and Inquiry in Social Work Practice. New York: Columbia University Press.

introduction

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Paquin, Gary W. 2009. Clinical Social Work: A Narrative Approach. Alexandria, VA: Council on Social Work Education. Reynolds, Bertha. 1934. “Between Client and Community: A Study of Responsibility in Social Casework.” Smith College Studies in Social Work 5 (1). Riessman, Catherine Kohler. 2008. Narrative Methods for the Human Sciences. Thousand Oaks, CA: Sage. Richmond, Mary. 1917. Social Diagnosis. New York: Russell Sage Foundation. Siporin, Max. 1985. “Current Social Work Perspectives on Clinical Practice.” Clinical Social Work Journal 13 (Fall): 198–217. Towle, Charlotte. 1945. Common Human Needs. Reprint. Washington, DC: NASW Press, 1987. Weick, Anne. 2005. “Hidden Voices.” Social Work 45 (5): 395–402. White, Michael, and David Epston. 1990. Narrative Means to Therapeutic Ends. New York: Norton.

part

I

Writing as Discovery and Healing is well expressed by the novelist Eudora Welty in One Writer’s Beginnings (1983, 102): “It is our inward journey that leads us through time—forward or back, seldom in a straight line, most often spiraling. Each of us is moving, changing, with respect to others. As we discover, we remember; remembering, we discover.” Narrative approaches are particularly suited to that “inward journey,” the slow unfolding of meaning over time, and the way that meaning enriches practice. Lynne Mijangos has recurring dreams of a gnome, which fi nally yield up their meaning. In a narrative that weaves back and forth between a fi rst-year field experience and adult understanding of a memory from childhood, she shows how the very act of writing one’s story changes it: as unformulated experience rises to the surface, new insights emerge. Lynn Sara Lawrence is stopped in her tracks by a painting seen on a museum wall. The chapter braids the close read of the painting with increasing levels of self-reflection. Writing as discovery takes on new meaning as the past gives up its secrets in real time. What was hidden in the painting provides the key to what was hidden from her. Kristen Slesar tells of her work with children who have been abused— work that she loves but that hurts her. She describes a time when she sustained

the circuitous route to self-knowledge

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counci l on s oc i a l wor k e d u c at i on soc i a l wo rk c o m p e t e n c i e s

1. Demonstrate Ethical and Professional Behavior The professional self begins as a personal self. Mijangos, Lawrence, and Slesar are midcareer professionals whose chapters exemplify “continued professional development” and engagement in “career-long learning.” Their chapters illustrate the ways in which writing fosters understanding of how “personal experiences and affective reactions influence professional judgments and behavior.” Each author learns something. Whether the self-discovery occurs before, during, or after their encounters with clients is less important than the result: an enhanced ability to “use reflection and self-regulation to manage personal values and maintain professionalism in practice situations.”

personal and psychic injuries in the process of restraining a child from doing harm to herself. The transformative effect of writing of this experience in a narrative medicine workshop brings healing.

1

Stuck AN IN T E RS ECTION OF STORIES



ly n n e ba m at m i j a ng o s

When we cannot find a way of telling our story, our story tells us—we dream these stories, we develop symptoms, or we find ourselves acting in ways we don’t understand. s t e p h e n g r o s z , The Examined Life

sharp sound of her own heels against the waxed linoleum floor of a hospital corridor as she makes her way to the isolation room where her five-year-old daughter has been a patient for the past eight days. No communicable disease or infection has been identified and, since entering the hospital for fever and dehydration, the girl has not vomited again. She is pale, but she is eating and her temperature is normal. The doctor wrote her discharge order this morning. Here in the hospital corridor the mother passes a nurse’s aide, who comes out of the men’s ward pulling a stainless steel, squeaky-wheeled cart laden with breakfast trays. The smell of oatmeal and half-eaten eggs mingles with base notes of hospital antisepsis. These smells are more familiar than she would like, not only from visits this past week but also from eight days on the secondfloor maternity ward six months earlier. Full term, she had delivered a stillborn baby boy. The baby’s body was released for burial before she was discharged from the hospital. Only her husband stood with an undertaker in the March wind and pushed the metal marker, with the name John Robert and the year 1954, into snow-covered ground on the edge of the church cemetery.

a m ot h e r h e a r s t h e s h o r t,

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Now, halfway down the hospital corridor, she hears, “Mommy, Mommy!” Her daughter has memorized the sound of her footsteps this week as she approaches the isolation room during visiting hours. “Mommy, Mommy,” she calls again. “I have good news. I get to go home today!” The girl’s voice pulls her into the present. Daily her children’s voices pull her from muzzy, sad grey thoughts. She laughs and crosses the threshold to the five-year-old, who she calls her “easy child,” the girl who is easier to please and quicker to laugh than her four-year-old sister. •

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I was that “easy child,” who became an “assistant mother” (Deutsch 1945, 73) before I turned two. When I was sixteen months old—before I learned to talk—my sister Cathy was born and my mother’s father died suddenly of a heart attack. I learned to use good behavior, cheerfulness, and helpfulness to cushion adult “soft spots,” just as I would learn to protect newborn fontanels—the spot where temporal and parietal bones have not yet knit together and blood pulses just beneath the scalp. From mother’s helper I grew to be teacher’s helper, and babysitter for a family with two girls who were born with spinal muscular atrophy, before I entered a hospital school of nursing. Hospitals were familiar places. Not only had I been hospitalized at five with fever of unknown origin but also I had shared a room with Cathy, several years later, when we had our tonsils removed. We waved to Mom in the window of her room on the maternity floor when two more siblings were born. We visited the children’s ward when our baby brother developed pneumonia and an allergic reaction to penicillin, read every Cherry Ames adventure, and became candy stripers before going off to nursing school. I planned to be a pediatric nurse, but I quickly learned that hospitalized children want only their mothers. After graduation I donned my white cap with black velvet stripe and, armed with stethoscope, wristwatch, bandage scissors, and hypodermic needles, worked in an emergency department. It did not occur to me then that I was trying to turn my passive role as a patient into a nurse’s active role. Three years later I left the hospital’s rotating shifts and physical demands to my husband, who was a surgical resident. I became a full-time mom until the youngest of our three children was in grade school. When I entertained thoughts of returning to work as a nurse, I remembered liking the

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pace and stimulation of work in urgent care but not liking the rapid turnover of patients. Their stories of illness or accident were only beginning to unfold when they were transferred, discharged, or died. Perhaps more importantly, I had been sensitized to loss. Since last working in the hospital, I had delivered a full-term, stillborn child. My mother had died of peritonitis five days after she was diagnosed with pancreatic cancer. The novel Ordinary People (Guest 1976) introduced me to the idea of working with people needing something other than medical or surgical intervention. My own grief work confirmed the usefulness of talk therapy. Tying tourniquets, dressing wounds, and giving tetanus shots was not the only way to help. Rather than read thermometers and sphygmomanometers, I would read theories of mind. I entered a master’s program in social work with a concentration in families. The program requirement—that first-year students learn to provide concrete services and partner in community systems—sounded like what I had been doing as nurse, mother, and community volunteer for fifteen years. It seemed extraneous to my intended work as clinical social worker, talk therapist, and interpreter of dreams, but it was during my first field placement that I stumbled on the significance of a dream that began when I was five and still, occasionally, pestered me: My mother and I are on our way to the corner grocery store. A gnome, dressed in curly-toed shoes, striped stockings, and pointy cap, waits on the sidewalk. He tries to pinch me. My mother cannot see the gnome. I try to hide, wrapping myself in her skirt. I wish readers could see the gnome, silent as the G in his name, but it is as difficult now as it was when I was five to relate dream-sensation. “The inner eye of the dreamer . . . catches more than the tongue can tell” (Kahn 1975, in Sanville 1991, 186). •

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“Bethany” had been treated in a local emergency room after her mother, “Vivien,” struck her with the cord of an electric iron, after hearing that her fi fteen-year-old daughter was pregnant. A report was fi led with Child Protective Services. The caseworker who followed up found mother and daughter sorry, scared, and in need of services. She referred them to the agency where I was a student making home visits and learning to “start where the client is.”

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Vivien opened the door of a one-bedroom apartment on the fifteenth floor of a housing project. Autumn light cut through the barely cleaved, claret-colored drapes and sliced across wall-to-wall shag carpeting strewn with 78 rpm records. The black shellac platters with purple labels brought to mind music coaxed by a gem-tipped needle from grooved disks spinning in the record cabinet, which I remembered from childhood. “White Christmas” and “I’ll Be Seeing You” were songs my parents knew from World War II. Vivien’s collection transported me to the past. On my way up in the elevator, I had tried to imagine what it might feel like to be “mandated clients,” held hostage by questions and assessments of a blue-sweatered stranger studying to be a do-gooder. Social workers know our reputation in housing projects often precedes us: sensibly dressed, scrubbed-faced workers who take away people’s children. No matter how many goods and services we help access—milk and cheese, medical care, and emotional support—we can be as feared as the women who are said to cover their hair with kerchiefs, wear gold-hoop earrings, and steal sleeping children. So there I was on a Thursday afternoon, in the living room of people I had never met, trying my student best to “assess needs” and “facilitate connections” as Bethany and Vivien made room for a baby in their family. The pregnant teenager had not yet started to show. She seemed to float in and out of the room, appearing and disappearing. Her mother sat on a flocked velvet couch and invited me to sit across from her in a matching chair. They offered soft drinks and cookies. Vivien seemed eager to talk. She had not left the housing project for more than ten years. I listened as she told of being a singer who had worn sequined gowns and feather boas while entertaining audiences in a big city. She had “entertained temptations,” too. “But then,” she said, “I found God, and a little girl who needed me.” Pointing to baby pictures on the wall, she described the neighborhood where Bethany was born and the crime that flourished there. “I stole her from my brother and his wife,” Vivien said. “Stole her?” I asked. Vivien gave a quick summary of her actions eleven years earlier, when, prompted by a desire to protect her niece, she went to court and legally adopted Bethany. “I wanted her to have a cultured life and a college education,” she said. “That’s why I lost my temper when she got in a family way.”

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Listening to stories of herself as a baby and hearing of hopes harbored on her behalf, Bethany closely studied Vivien, whose eyes grew bright with tears she refused to let fall. My role, in the agency’s broadly stated goal of family preservation, was to facilitate transitions into new phases of their life together. I visited weekly after Bethany got home from school. Her due date was in May, near the end of her sophomore year. In November, Vivien gladly signed an application to a school that provided daycare for students who wanted high school diplomas and also wanted to be with their babies during free periods. Mother and daughter started to sit near each other on the sofa, to smile, and to anticipate their new roles as grandmother and mother. By January, they began to consider names—strong names, sweet names—names for girls and names for boys. Bethany shopped for blankets, booties, and bibs. Vivien borrowed a crib from a neighbor down the hall. In February, during winter break, I invited the two of them to have lunch at a neighborhood diner. Bethany showed interest. Vivien quickly agreed that her daughter could go with me, but she herself could not be coaxed to come with us. One of my goals—to have Vivien venture out of doors—had never been hers. When she first said that she had not left the apartment in ten years, I offered a referral for individual counseling. She refused, saying, “No, I talked to someone once, back when my nerves were bothering.” I asked when that was and what she meant by “nerves bothering.” She could not say. She jumbled words and chopped off sentences, before focusing again on life here and now. I joined her in talking about the present, but I could not help wondering what had happened in the past to unnerve this woman who had belted out music on stage, fought for a child in danger, and established a home for them hundreds of miles from where they began. There were many things I could not help with, certainly not in seven or eight months of working together, but Vivien and Bethany had a history of making their way. Working with them was less stressful than working with teens who left home to live with violent boyfriends, quit school, broke appointments, left babies in playpens while spending time with friends on the street. Bethany and Vivien were my “easy clients.” In March, Bethany’s doctor said she was spilling sugar in her urine and ordered a glucose tolerance test. I remembered what I could about gestational

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diabetes and answered questions about the condition in which glucose levels are elevated during pregnancy. I explained the importance of monitoring glucose levels and reviewed the clinic instructions for the blood test. During our next visit, I inquired about the test results. “I set the alarm clock,” said Vivien, “but Bethany missed the bus.” The girl looked down at her shoes. Intending to “join” Bethany—to let her know that she was not alone in wanting to sleep in on cold winter mornings—I said, “I hate getting up early.” They were surprised by my candor, and we all laughed. I explained, again, the importance of having more information in order to make good decisions. Before I left, Vivien scheduled another appointment with the prenatal clinic. When Bethany missed the second appointment, I probed more deeply into the situation. Blood tests involve needles. She liked needles even less than she liked getting up early. I listened. And then tried to problem-solve. Cautiously, I suggested the possibility of Vivien going with Bethany to the appointment. In silence, she seemed to search inside herself for courage needed to leave her apartment. Finally, she said, “I even go to church on television.” “Does the baby’s father have a car?” I asked. Vivien said he had not been seen for weeks. “Is there a friend at school?” When a companion could not be identified, I picked up the phone, made a third appointment for a glucose tolerance test, instructed Bethany not to eat or drink anything after eleven o’clock, and said I would pick her up at six the next morning. Driving back to the agency, I encountered rain and rush hour traffic. But travel conditions were not sufficient to warrant the tension I held in my shoulders. I breathed deeply, uncurled my fingers—extending and flexing them over the steering wheel—and considered what I had just done: picked up the clients’ phone, scheduled an appointment, and ignored Bethany’s right to decide on her own medical treatment. Why had I acted so abruptly? Why was I more intent than she or her mother on having the blood work done? Was student zeal taking over? Or, in social work parlance, was I becoming overly involved? My supervisor’s door was open. Setting aside the report she was writing, Natalie sat back and listened. I said Bethany had missed two lab appointments. I had made a third appointment and planned to take her in the morning. On some level, I must have wanted my supervisor to state agency policy prohibiting students from conveying clients in cars.

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“Is that allowed?” I asked. “The agency doesn’t encourage us to transport people in our own vehicles,” Natalie said, “but, when we have good reasons, they cover us. What feels urgent?” “I don’t know,” I said. “The doctor ordered a glucose tolerance test. The girl is afraid of needles. Her mother doesn’t leave their apartment. I don’t think she’ll go alone.” “How important is the test?” Natalie asked. “Only five percent of pregnant women develop gestational diabetes, but being African-American, younger than twenty, and overweight for her height increases the chances of developing gestational diabetes. Elevated blood sugar could indicate insulin resistance and warrant changes in diet and exercise, or the need for medication. If Bethany develops the condition, risks to her baby include excess weight gain, difficulty descending the birth canal, respiratory distress, hypoglycemia, and an increased chance of having childhood diabetes.” I took a breath and concluded, “More needles.” “You understand the physical aspects of pregnancy as well as social and emotional needs,” Natalie said. “Families assigned to you get a bonus.” But we both knew that the information I spouted did not explain my anxious insistence on following through with the test. That day I did not stop to think whether hospital nursing had heightened my sense of all that could go wrong, or if delivering my stillborn baby girl after a healthy full-term pregnancy or now having a daughter the age of Bethany was provoking unnecessary caution and concern. “Am I becoming overly involved?” I asked. “We’ll both keep an eye on your becoming ‘overly involved.’ ” Natalie smiled. “Meanwhile, if you decide to help Bethany keep her appointment in the morning, I trust something is needed that can only be found at the hospital.” •

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Bethany and Vivien lived in the northwest quadrant of the city. I lived in the southeast. The hospital lay in the belly of the city. It was still dark when I got up at five o’clock hoping to help Bethany keep the appointment. Sunrise colored the sky pink as I pulled in front of her apartment building and found that Bethany was not waiting. I took the elevator to the fifteenth floor. Vivien opened the door. Bethany stood looking like a small child

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wanting to be wrapped in her mother’s skirt. She was not happy. Neither was I. The early hour exacerbated my feeling of exhaustion—not only from working, studying, and mothering but also from feeling powerless in the face of Vivien’s fear of open spaces and Bethany’s fear of needles. •

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In the waiting room, I commended Bethany on her willingness to have the test, to care for herself and her baby even when it was scary or hurt. She smiled. When the nurse called her name, I went with her and witnessed the first finger stick. “Just a pinch,” said the nurse. She stuck the tip of the girl’s index finger, drew blood into a toothpick-thin glass tube, pressed an alcohol-soaked cotton swab over the punctured finger, labeled the sample, and handed Bethany a thick concoction of simple sugars to drink. There was more waiting than testing that morning, allowing me to reminisce. I had not worked in a hospital in fifteen years and had not been a patient since my last child was born, nine years earlier. Hospital milieu had changed. Doctors were beeped, not paged. Nurses no longer wore white caps and uniforms. Some wore scrubs or sorbet-colored smocks. But not everything had changed: the pea-green walls, the rubber-soled shoes, and the stale, steamed odor of institutional food remained. An hour after the nurse drew the fasting blood sugar, she drew another sample, which would be used to measure Bethany’s ability to convert glucose into energy. We waited for a second and third postprandial prick, each an hour apart. Bethany was not my crying baby sister. She gave few clues to what went on inside; outside, she was brave. After driving Bethany to school, I went home to study for midterm exams. I opened the social work text in front of me. Words smeared across the page. I heard a nurse say, “Just a pinch.” Suddenly pitched into a wormhole, shunted through a curved handle of time and space, I emerged thirtyfive years earlier in the isolation room of the Kane Community Hospital. •

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I am five. Earlier today, Dr. Hockenberry made a house call. After examining me, he snapped together his worn black bag. I liked the way it thudded closed. There was no “shot,” like he usually gives for tonsils or ear infection. “She’s dehydrated,” said the tweed-coated doctor with silver hair and wireless glasses. He

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turned to my father. “Get her admitted. I’ ll meet you at the hospital.” One of the adults explained what “ dehydrated” means, as light fell through the living room window on Mom’s African violets. When those flowers started to droop, she would cup one hand around their leaves and pour water from a measuring cup into the potting dirt, which drank in greedy gulps. “You’ ll see how much water I can drink if you let me stay home,” I said. The doctor said it would be impossible to drink all I had lost in a day and a half of fever and vomiting. I needed to be “ hydrated” in the hospital. How, he hadn’t said. At the end of a long hall, in a room with pea-green walls, I am lifted onto a bed with no pillow. The sheets feel stiff as the nurse’s cap looks. I see myself in a mirror tilted over a dresser at the bottom of the bed, until told to lie on my belly. The hospital gown that snaps in back will not protect me from the “shot” the doctor did not give at home. “Excuse us,” says the nurse to my parents. “You’ ll have to wait outside.” My father leaves. My mother leans down. “We’ ll be back,” she says, and squeezes my hand. The clean, rough sheet brushes my face as I turn toward the door to follow with my eyes. The nurse blocks my view. She stands by the bed, ready to hang a bottle of water upside down from a hook on a wheeled pole. Her skirt rides up and the seams on her white nylons grow longer as she reaches for the pole. The tips of her rubber-soled shoes curl as she stretches onto her toes. When the doctor asks for help, she disappears into a snap of rubber gloves, the smell of rubbing alcohol, and the feel of cold, wet cotton. “Just a pinch,” she says every time the doctor buries a needle in my back. I bury pain and bewilderment as he tapes in place four needles. Glucose water seeps into soft tissue over what people call “shoulder blades.” I think of those bones as skinned-over, sawed-off wings. Pinned like a pale, dry moth, I stay on my belly for eternity. I cannot roll onto my back until my thirsty tissue drinks the sugar water, drip by drop, from the bottle hanging over the hospital bed. Another day, a nurse stands in front of the dresser at the foot of the bed with her back to me. She tries to hide the needle she sticks into a small, red rubber– topped glass bottle and draws out medicine. “What are you crying about? This is for the girl in the next room,” she says. Her voice says I am acting like a baby, and she is cross. There is no radio. No game or toy musses the starched sheets. I don’t yet read or write. There are no side rails, but I don’t dare get out of bed to see if there are crayons in the dresser drawer. Another nurse comes. I tell her I

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hear crying. “That’s the children’s ward. You don’t want to be in there,” she says. “It’s too noisy.” I miss Cathy. The night nurse brings tomato juice and saltine crackers until I get canker sores on my mouth and she is no longer permitted to bring a midnight snack. I hear the short, sharp sound of heels clicking down the hall. “Mommy, Mommy,” I call, “I have good news. I get to go home today!” She laughs because I think I know something she does not. •

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I did. I knew what happened after the nurse ordered my father and her to leave the room. I saw, heard, and felt what they did not. When the doctor and nurse stuck four needles in my back, fright offered its usual choices: fight or flight. I chose neither. I fell asleep and authored a dream. Rumpling the nurse and shrinking the doctor, I fused them into the shriveled gnome—in pointy cap, striped stockings, and curly-toed shoes—who stood for years on night’s doorstep trying to pinch me awake. •

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In supervision, I told Natalie that Bethany’s glucose tolerance test was within normal limits. I thanked her for not knowing what but knowing something had to be found at the hospital. Staring at pea-green walls, smelling breakfast trays and Lysoled linoleum, I had waited with Bethany. Age, education, and socioeconomic differences softened and smudged until I was kin with a girl whose mother was not able to be with her. “At the hospital,” I said, “I found my five-year-old self.” When the semester ended, Natalie added my caseload to her own. The day I went to clear my desk at the agency, she told me that Bethany had given birth. That afternoon we went together to visit the family. Bethany was holding her newborn snugly wrapped in a striped cotton blanket. She asked if I wanted to hold Monika. Vivien said that her granddaughter weighed six pounds at birth and was an eager eater. I held the baby a long while, studying her tiny features framed with curly black hair. She slept with her tiny fists curled next to her ears. Eventually she started to squirm, uncurled her newborn fists into long, narrow fingers, stretched her arms over her head, and opened her eyes.

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Mysteries remain. I never learned why Bethany was afraid of needles, the cause of Vivien’s fear of open spaces, or the cause of the fever and dehydration that sent me to the hospital when I was five. I often think of how I accepted Vivien’s decision not to be treated for agoraphobia but blundered with Bethany, insisting that she be tested for gestational diabetes, which she did not have. My sense of responsibility for mothers and babies—trying not to miss an illness or condition that could be treated—had led me to lose sight of a client’s right to decide her own care. Waiting with Bethany at the hospital, I experienced context replication. Colors, sounds, smells, words, and four needles reactivated my senses to similar sensory stimuli that I had known in an isolation room during a frightening medical procedure. Like Bethany, I was daughter to a mother who could not always be with me. Natalie’s listening taught me to value supervision. Giving an account of what happened at the hospital and seeing the gnome as the doctor and nurse threatening to “pinch” me extinguished my dream. Understanding more deeply the intersection of Vivien and Bethany’s story with my mother’s and mine was a slower process, which required introspection and reflective writing. Learning to listen to myself, in what Patrick Casement (2006, 29) calls “internal supervision,” afforded further identification with others and continued exploration of possible meanings. Writing is a form of witnessing embodied memory, “a memory of experience now written into the tissues” (Frank 1995, 165). As a form of internal supervision, writing is useful in problem solving, decision making, and distinguishing past from present experience. Writing provides a frame in which to consider “person-in-situation” (Cornell 2006) and allows for multiple points of view. After witnessing my child self and giving voice to feelings of isolation and abandonment, I slipped on my mother’s shoes and stumbled upon spatial-temporal connections between her stay and mine in the same hospital in 1954. Having grieved a stillborn child in my early twenties, I knew what I could not have known when I was five. Reliving my grief—emptiness, longing for the baby’s fluttering and flipping, numbness and unreality pierced by the reality of a loss that was invisible to everyone except my husband—I tried to imagine my mother’s grief. That is when I met her coming down the hospital

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corridor, in the scene that opens this chapter. Trying to write from her point of view, I found her grieving the loss of her stillborn child while caring for three small children twenty-four hours a day. Did that experience echo and magnify what she had felt three years earlier, when her father died three weeks after Cathy was born? Both times she must have been distracted from grief by the needs of children and distracted from children’s needs by grief. Writing locates us in time and place. Realizing that my parents moved less than two months after my maternal grandfather died, I mapped another loss. My father’s transfer, as a state policeman, necessitated moving to a town where my mother knew no one and leaving behind her mother, grandparents, and hometown. New neighbors and friends would not have known the father she missed. With little time, space, or company in which to mourn, she must have buried grief as I had buried pain and bewilderment. Along with her grief went my mother’s liveliness, which I had known in infancy. En fans, the Latin root of infancy, means “without words.” I had no words at sixteen months, or at five years, to express the deep need for my mother. I have none now to describe a child’s disavowed loneliness and fear. Burying those feelings in dream, I became my mother’s helper. By day, we walked to the store, wrapped in illusions of me as her “easy child.” By night, I walked in my sleep. My mother walked beside me but could not see what I feared. The gnome not only threatened to pinch me but also, as the name implies, guarded something known that I wished not to know: my mother could disappear. She could be ordered from the room, become lost in blue thought, or, like the baby in March, she could die. Rather than feeling afraid, I tried to mother myself. Attempting to meet my needs by caring for others resulted in countertransferential confusion, until I accompanied Bethany to the hospital, recognized the needle-wielding doctor-nurse disguised in dream, and finally felt the moldering fear I had asked the gnome to hold. Working with Bethany and Vivien made manifest the origins of my interest in working with children and families. Fuller understanding of self and other continues as I read and write reflectively. Most recently, reading Marian MacCurdy’s (2000, 162) “From Trauma to Writing,” I came to see the gnome as an iconic image, “a mental picture that is stored deep within the limbic system and is not easily available to the cerebral cortex. Traumatic memories are sensory, that is, the body reacts to

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them even when the conscious mind is not aware of the cause of such reactions. This is because these iconic memories are stored in the amygdala, a part of the limbic system which not only retains these images but gives them their emotional weight.” i mp l i cat i o ns

Hospital policies have changed since I was a child, in the mid-twentieth century. Today, many more professionals understand that a hospitalized child functions at an earlier stage of development than her chronological age suggests and has a greater need for her parents’ presence than a healthy child has. Often, parents whose children are ill show signs of weakened self-esteem, which is further diminished when their children are left to “experts” and parents are rendered helpless. Child life specialists address the plight of hospitalized children by modifying hospital milieu, assisting with stresses of illness, and advocating for families. As a result, parents and children are separated less frequently. In some places, parents accompany their children into operating rooms, hold them during induction of anesthesia, and stay with them in intensive care units (Furman 2001). Nevertheless, this chapter may remind readers to listen for what children know and express in drawings, dreams, and play. Writing (organized in the left hemisphere of the brain) is a form of internal supervision that complements oral exchanges (processed in the right hemisphere of the brain) in group or individual supervision. Beyond expected record keeping and case notes lie power and potential for “the making of a narrative,” which Stern (1985, 174) claims “is not the same as any other kind of thinking or talking. It appears to involve a different mode of thought from problem solving or pure description. It involves thinking in terms of persons who act as agents with intentions and goals that unfold in some causal sequence with a beginning, middle, and end.” Writing this narrative of coming to work in professions focused on physical, mental, and emotional well-being reinforced my professional identification and the importance of social workers’ need to “present themselves as learners” and “apply self-awareness” and “use supervision and consultation to guide professional judgment and behavior” (Council on Social Work Education 2015, 7).1

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Writing allows discovery, allows as many attempts as necessary to thicken understanding of individuals and complex social systems. Years after meeting Vivien and Bethany and rediscovering my five-year-old self, I continue to unearth artifacts of memory by writing narrative. Digging up what I bury can be unsettling. Even reading an old diary—notes from a younger self—threatens embarrassment, but discovering what I do not know I know yields rich rewards. Writing about my mother’s absence made room for her presence in another memory: Running around the waiting room, I stop waist-high to Mom’s knees as she unwraps cellophane and holds out a white paper tray with five jelly candies: red, orange, yellow, green, and black. I take black—my first taste of licorice. We must have been in Dr. Hockenberry’s office for a well visit and smallpox vaccination. My mother dated the immunization in my baby book: June 3, 1952. I was not quite three. No wonder my memory is as faint as the mark on my arm. I don’t recall the actual procedure, but I know my mother stayed with me that day because, another day, years later, when I asked why my almost invisible mark of vaccination did not look like the large, wheeled circle on her arm, she answered with a story. Pretending to draw a tiny circle on my shoulder with her right index finger, she imitated the doctor’s gruff voice: “Comes time for a prom dress, this girl won’t be happy if I leave a scar.” •

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Twenty-six years after this clinical encounter, I could find only my supervisor. When I asked her about the possibility of contacting the family, she said the agency often is unable to find clients even six months after their last visit. Clients move frequently and, in this era of cell phones, do not have home phones. Bethany’s and Vivien’s agency records no longer exist. I dedicate this chapter to my supervisor, Bethany, and Vivien, for their trust and collaboration and for helping me learn how and why I became a social worker. n ot e

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The “Ethical Standards” section of the National Association of Social Workers (2013, 1.02) revised Code of Ethics reads, in part:

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Social workers respect and promote the right of clients to self-determination and assist clients in their efforts to identify and clarify their goals. Social workers may limit clients’ right to self-determination when, in the social workers’ professional judgment, clients’ actions or potential actions pose a serious, foreseeable, and imminent risk to themselves or others.

references

Casement, Patrick. 2006. Learning from Life. London: Routledge. Cornell, K. 2006. “Person-In-Situation: History, Theory, and New Directions for Social Work Practice.” Praxis 6: 50–57. Council on Social Work Education. 2015. Educational Policy and Accreditation Standards for Baccalaureate and Master’s Social Work Programs. www.cswe. org/File.aspx?id=81660. Deutsch, H. 1945. The Psychology of Women: Motherhood. New York: Grune and Stratton. Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Furman, E. 2001. On Being and Having a Mother. Madison, CT: International Universities Press. Grosz, Stephen. 2013. The Examined Life. New York: Norton. Guest, Judith. 1976. Ordinary People. New York: Penguin. Kahn, M. 1975. “In Search of the Dreaming Experience.” International Journal of Psycho-Analysis 57: 235–330. MacCurdy, Marian M. 2000. “From Trauma to Writing: A Theoretical Model for Practical Use.” In Writing and Healing: Toward an Informed Practice, ed. Charles M. Anderson and Marian M. MacCurdy, 158–200. Urbana, IL: National Council of Teachers of English. National Association of Social Workers. 2013. Code of Ethics of the National Association of Social Workers. https://umaine.edu/socialwork/files/2013/02/NASWCode-of-Ethics.pdf. Sanville, J. 1991. The Playground of Psychoanalysis. Hinsdale, NY: Analytic Press. Stern, D. 1985. The Interpersonal World of the Infant. New York: Basic Books.

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Garden at Vaucresson IT ’S N OT A LL A B ED OF ROSES



ly n n sa r a lawr e nc e

One day in early spring . . . I opened wide the window with its aluminum sash and the wind came in from the south like an avalanche of snow. Then, one after the other, I opened all the windows in the house. The window over the kitchen sink of course, and the glass lattice windows in the dining room and then the bathroom window. The house quickly became a hollow cavity for the wind to race through I stared in blank amazement at the courtyard for drying clothes where the clouds in the sky ran quickly past. Two slender branches of mistletoe, which had been entwined there, snapped in the wind and fell. I looked up to see the neighbor’s great zelkova tree, gradually encroaching on our side of the fence, blasted by the wind, causing both branches and trunk to sway violently. Through the slanted skylight, a few rays of sun would pierce for just a moment and then vanish, only to return, combined with buds blown in from the plum tree—everything timed to the rhythm of illumination and concealment. ta k a s h i h i r a i d e , The Guest Cat

I read stories and I listen to them. As a therapist, I look for connections between past and present. As a student of narrative, I reflect on ways in which the present and past conflate when I locate myself in a text. We read Virginia Woolf ’s To the Lighthouse in my narrative medicine class “Close Reading–Reflective Writing.” The prompt for the February 14, 2012, post was “Choose a piece of visual art or music from the period Woolf was writing To the Lighthouse (1920s). Gaze or listen to the piece for twenty a s a r e a d e r a n d a t h e r a p i s t,

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minutes, giving it your full attention. Write a short posting describing what happened.” Easy enough. Twenty minutes of gazing at and writing about a painting now has turned into four years. Linear time. This is the story of that assignment and of the interstices along the way, where a painting came into the crosshairs of psychoanalysis, the aesthetics of art, and the enigma of the brain. Narrative time. I choose Édouard Vuillard’s Garden at Vaucresson (figure 2.1), circa 1920—or rather, it chooses me. I’m at the Metropolitan Museum of Art, intending to see some German expressionist exhibition. Somehow I get turned around and find myself in front of this painting, where I remain for twenty minutes or so, completely transfi xed. It is very quiet in the museum, six p.m., dinnertime. I have the novel experience of having the painting all to myself. Transported back to France, I inhale. This is the garden of my dreams, lushly fi lled with red poppies, white roses, dappled light on the generous manor house in the background. There is quietness about it, an emotional restraint. The exuberance is in the chromatics. I almost don’t recognize this as a Vuillard—it is too “normal,” which, as the reader will soon see, takes on a supreme irony in the context of what unfolds here. Missing was what I had come to love about Vuillard—the innuendo, the surreptitious glances, the mysterious inchoate positions of figures surreptitiously peering from and behind corners (Interior of the Work Table, 1893), merging (Two Seamstresses in the Workroom, 1893), or being utterly camouflaged by syncing patterns between the dress and the wallpaper so that the figures are indistinguishable (L’atelier de couture, 1892). The painting is large, almost five feet by four feet. It is impressionistic. The foreground is lit with yellows, the color of morning. The middle ground of the painting is in dark greens, shade, and, in the background, the manor house is dappled with light. The profusion of foliage and purple phlox down the length of the painting invites the eye to travel back toward the manor house. Flowers, especially the white roses, continue toward the house, becoming transformed into dappled light. An outline of a balcony is visible because of the railing and the elevated height of the woman figure encased within it, looking downward, wearing a pink kimono. I want to be in the painting, reading, enjoying the morning light. I let my mind wander, wishing I could sit down and time travel into the painted garden, but there are no benches in this gallery. I have been “close looking”

Figur e 2.1 Édouard Vuillard, Garden at Vaucresson (1920). Catherine Lorillard Wolfe Collection, Wolfe Fund, 1952. Metropolitan Museum of Art, New York. Gallery 828.

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for more than twenty minutes before I see the caption alongside the painting, which reads, in part: The woman in the housedress is Lucy’s cousin Marcelle Aron. Lucy kneels across from her, at left, camouflaged by one of the large rosebushes that serve as decorative screen in the foreground.

I am stunned. In all my looking I had not seen Lucy. Prompted by the caption, I look and look and, ultimately, find the figure of a woman hidden by a giant white rose. This moment of recognition, this moment of a new “now” when another reality intrudes, changes everything. I am unsettled, no longer at ease in the garden. I feel like a voyeur staring at something I am not supposed to see, something the artist took care to camouflage. I am “caught,” and I turn my back on the dappled morning light, the white roses, the red poppies, and the gorgeous garden that no longer invites. I leave the museum for the welcoming anonymity of night falling in New York City. t h e co- c o ns tru c ti o n

This chapter describes the gradual unfolding of a co-construction between viewing Vuillard’s Garden at Vaucresson and my internal, repressed experience of a family secret hidden, like Lucy, in plain sight. The themes of camouflage in the art and in my life commingle. It is not until the writing of this event that the trauma is “represented” in a multifaceted way. My point of view shifts; the perspective changes. The time of the image (1920) is conflated with my entry into the painting, and a work of art from long ago becomes the present (Moxey 2012). Art has the power to evoke memory and is thus a useful tool in working with all client populations, especially those dealing with trauma. “Writing as discovery” has the capacity to give shape to what was previously not metabolized. It adds a critical dimension to healing, as narrative memory replaces traumatic memory (van der Kolk 1996, 287). Intersubjectivity, coconstruction, representation, and writing as discovery—principles paramount to narrative—are discussed. t i me a n d th e i m ag e

I was making my way through Columbia’s Program in Narrative Medicine, happily immersed in reading classic literary texts and finding my present

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experience powerfully coincide with texts such as, say, T. S. Eliot’s “Four Quartets.” The beauty of narrative is that anything can be a text—a poem, a page out of Henry James, or a graphic novel—as long as it follows the rigor of a close read. The assignment, to view a painting while reading To the Lighthouse, contained a covert task for the reader, because Lighthouse is in part about painting and the art of writing a novel. Which is the most powerful narrator: a painting or the written word? Which tells the story? Or do they both? In the novel, Lily Briscoe paints and paints, forever looking for the “center” line. Does that convey a simultaneous instruction to the reader about Lighthouse? Does the center hold, once we get to that devastating middle chapter, “Time Passes”? Mrs. Ramsey, the hub of everything, dies suddenly “the night before.” Daughter Prue dies in childbirth. An exploding shell kills son Andrew. I learned to “enter” a painting, as I learned to enter a literary text, and locate something of myself in the work. History was becoming like recombinant DNA, the time line of works of art intermingling with the present through the viewer. As Didi-Huberman (2003, 31), the French historian and philosopher, notes, “Whenever we are before an image, we are before time. It hides nothing from us, all we need to do is enter.” But in viewing Garden at Vaucresson, something had been hidden from me, or so I felt. The painting’s caption pointed out that Lucy was deliberately camouflaged, so that made me feel somewhat better, but still, camouflaged does not mean obscured. Do others who view this painting see Lucy right away? Impossible! I had stood in front of the painting and asked other viewers, as they came along, to describe what they saw. They all noticed Lucy. I had not. Writing this chapter, I discovered many new truths, among them that Didi-Huberman was correct when he said nothing was hidden. Camouflage or no camouflage, nothing was hidden, and more than I bargained for was illuminated. I only had to enter the painting through the portal of my timeless unconscious. In twenty minutes, I turned 180 degrees. What happened in this space that incorporated time, interiority, concealment and unconcealment, blissful contentment superseded by feeling like a gate crasher? What could account for such an abrupt change in mood? How can a painting from 1920 cause me such distress? And it was only a painting.

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I wasn’t upset with anyone in real time. Or was I? Much has been written about the conflation of time in art history. The notion of time in art has been debunked. No matter the century in which a work of art is crafted, art has the power to invite viewers into ongoing dialogue in the present. Such an experience of intersubjectivity was an intellectually benign concept to me, until I read Kubler’s (1962, 19) exquisite analogy between stars and works of art being a portion of “arrested happening,” or an “emancipation of past time” (my italics). Now I was getting closer to where I lived—psychoanalysis. Here was one of the “crosshairs.” In psychoanalytic language, the parallel concept is that of nachtraglichkeit, an expression of nonlinear time, which carries two meanings: “later as in subsequent and ‘supplemental’ ” (Marion 2012, 93). In traumatic memory, the memory itself is dissociated and stored as a sensory fragment that has no linguistic component (van der Kolk 1996, 289). This fragment is stored without meaning. Narrative memory establishes an associative, linguistic link between a present scene and a memory of the scene of trauma. A story can now be told. And what about my side, the side that Kandel (2012) refers to as “the beholder’s share”? The concept of the beholder’s share asserts that the artwork is incomplete without the emotional participation of the viewer. The associative link between my present, where I stood happily transfi xed by the painting, until I was unnerved by the caption on the wall, was my share. Not seeing Lucy must have represented the dissociated fragment. Why had I not seen her? Because I was not supposed to. When Kandel says, “The eye does not work like a camera” (234), he is talking about how the brain processes visual information. I’m not just recording what I see; I’m eliminating what I’m not supposed to see as well. Trauma taught me not to see, or to repress what was hiding in plain sight. The brain stores traumatic memory waiting to be uncorked by an innocent viewing of a beautiful painting at the Metropolitan Museum of Art. Kandel’s assertion that the mind doesn’t work like a camera was not the only key that helped me unlock what this was about. My abrupt change in mood, upon seeing Lucy, provided another clue. “Our moods frame our experiences of the world,” and “the ‘mood’ of a painting may strike us far more directly and with much more intensity than anything we actually see in it” (Ankersmit 2005, 274). Ankersmit, a professor of intellectual history,

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writes about “subjective historical experience,” which allows the viewer to enter a painting of a different historical period from the viewer’s present and to have his or her own reaction, which uncannily corresponds to that expressed in the artwork. In this case, the correspondence between the painting and my experience had to do with something being hidden. Kandel’s findings support my “subjective” feelings. It was okay to feel unwelcome; it was okay that I hadn’t seen Lucy. These were not deficits; I didn’t need my eyes checked. They were my clues, and I had to follow them. As a kid, I had seen something I wasn’t supposed to see, or was allowed to see and not know what I saw. Or to know and not know. That was what it felt like in childhood. What I could not see or know was hidden in plain sight. It was concealed, and then it was unconcealed. I had lived in this liminal space. Lucy camouflaged by a rose touched a chord in me, a chord that sounded in the garden of my past, whenever I stumbled on something I wasn’t supposed to know. Garden at Vaucresson wasn’t about roses. It was about secrets. my pa s t e x p e ri e nc e

Jeff, my biological half brother, was five when his father, Sam, was killed in a peacetime flight returning from World War II. My mother was Sam’s wife, and Jeff was the sole product of that union. Stationed overseas during that same war was the man who was to become my father. His first wife had died of pneumonia shortly before he left for Europe. After the war, my soon-to-be father and mother found each other and married. Jeff is seven years older than me. I did not know of my parents’ first marriages. I grew up trying to understand my family history while “looking at the glass drum of a washing machine behind which various bits of the wash appear now and then but are all intertwined within the drum” (Koselleck 1985, 273). I had three grandmothers: Grandma Wilson, Grandma Rosenfeld, and Grandma Lieberman. When kids asked me why I had three grandmas, I punted: “Just lucky, I guess.” Repeatedly, over the years, I had asked my mother if she had been married before. “No,” she had always replied. Or I had asked why I had three grandmothers. “It just worked out that way,” my mother answered. If I make her sound glib, she was anything but. She, too, was uncomfortable. If I thought things were weird for me, they weren’t good for my brother, either. He always seemed to be angry with our father, and I didn’t

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know why. And, vice versa, my father seemed angry with him. I didn’t know what my brother knew, or when he knew it. And my brother usually was angry with me. What did they know that I did not? Everything was an ambiguous hint, bits and pieces of the laundry, a sock here, a towel there, floating in the drum. One day, when I was about ten, I again asked my mother if she had been married before. That day she said yes, and my life began to have a “before” and an “after.” Everyone I thought I knew as family became a stranger. That night, after his class trip to the Museum of Natural History, my brother came home for supper, as he always did. I sat on the other side of the kitchen table and watched as if I had never seen him eat before. I stared at him, the way I later would stare at Lucy in Vuillard’s painting. Where had she come from? Where had he? I don’t know whether I expected him to change color before my eyes or what. I just looked and looked at him. He had had a whole different life. So had my mother. And so, for that matter, had my father. Maybe that’s why my mother waited so long to tell me. I guess she figured it was a whole lot of history to take in all at once. Three new people: my mom, my dad, and my brother. The Museum of Natural History. History, yes, but not so natural. So this is why Garden at Vaucresson had, and has, such resonance for me. There was camouflage in the painting; there was camouflage in my life. I recognize the intersection of painting and biography, an intersubjective dialogue between text and person, what Martin Heidegger calls a “clearing.” h ei deg g e r: c o nc e alm e nt and u nc o n c e a l m e n t

In his seminal work On the Origin of a Work of Art, the German philosopher Heidegger was both narrativist and psychotherapist. His associations to Vincent van Gogh’s iconic painting of peasant shoes are lyrical. Where I saw creased, well-worn, old men’s boots, Heidegger (2006, 17) saw “the oiled warm insides of women’s shoes that trudged through the fields with no promise of bread at day’s end” (my italics). His dialectic of how “things” show themselves, “concealment-unconcealment” (37), this exact associative process of working toward a new “truth” or “clearing,” is fundamental to the scaffolding of this chapter and narrative work. For Heidegger, the truth is always “happening,” always evolving, and this is one of narrative’s main tenets—that no experience is final or can be “totalized” as the truth.

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In my first viewing at the museum, I had been in the crux of a traumatic memory, one that cannot, by definition, be understood. If truth is an ongoing, evolving process, there must be more to understand. What about my dominant mood of exclusion? Who is really being excluded? Who is the woman behind the rose, and what might Lucy represent for me? I have to go back. I return to the Met. s econ d v i e wi ng : o ne y e ar late r

I look again. This time I begin to see through the camouflage of my own story and to discern more as I closely read the painting. What do they know, Lucy and Marcelle? There is a big distance between them in the painting. Marcelle is elevated and, as I originally saw it, just taking in the morning. Medieval art history helps us tell another story. A hallmark of Fra Angelico’s paintings is the theme of expulsion artistically rendered through distance and smallness (Adams 1993). Now I see that Marcelle “presides” over tiny Lucy, who is hidden by a giant rose. So much of my work as a therapist is reading faces and visual clues to ascertain contradictions between what a person says and what his or her face betrays. Marcelle. How does Marcelle look at Lucy? What I see temporarily ushers me out of the garden and, strangely, into the bathtub as a ten-year-old. My mother comes and sits on the edge of the tub. She is higher, taller than I am (like Marcelle), and we talk about my day at school. I must have asked her again about my three grandmothers. I see that she flinches as if to protect herself from my words. She doesn’t say anything new, but the corners of her eyes twitch and tell. She blushes at the tops of her cheekbones. Another “clearing” reveals itself: I realize that my mother does not purposely withhold this information. She, too, is wounded. She fears what might escape when I reopen Pandora’s box of hurts, and what it might do to us all. I focus on the painting again and realize that Vuillard must have stood between Marcelle and Lucy as he painted them, with Marcelle on the right side, on a balcony, looking down on Lucy. Unlike many of his other paintings, Vuillard has not painted himself into Garden at Vaucresson. I see absence. Vuillard’s absence. And then I see another absence. Where was my father? I wonder for the first time. This is as jolting as not seeing Lucy. Why wasn’t he next to my mother when she told me about their earlier lives?

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Was he in the darkroom? A radiologist, my father “lived” in the darkroom, taking and developing films. He stayed in the dark, looking at the human skeleton, hidden but revealed by X-rays. I am blown away in the “now” of knowing that light attracted me to Vuillard’s painting. Now I see the darkness. We were all in the dark. p eel i n g th e o ni o n

Heidegger’s truth through “unconcealment” is, for Jon Mills, a professor of psychology and psychoanalysis, the psychoanalytic process itself. The peeling of the onion, layer by layer, defined “psychoanalytic truth,” that is, the unconscious. “The unconscious speaks the truth, but not the whole truth all at once. What remains hidden can be revealed, only then to be covered over by another articulation” (Mills 2014, 283). Moreover, “that which is seen is that which is unconcealed. However, it may need to be looked for because it can escape our notice, as our perceptions are not always sufficiently attuned to what is being disclosed ” (279, my italics). All this talk about eyes, looking, seeing, not seeing is rooted in early messages of “Do not enter” what you are not supposed to know. As a therapist, I know that the theme of exclusion is redolent of the “primal scene,” or “the child’s experience of witnessing sexual intercourse between the parents, or unconscious fantasies of this” (Auchincloss and Samberg 2012, 196). Somehow, though, this didn’t feel right. The psychoanalyst and artist Danielle Knafo (2012) highlights the child’s curiosity instead of the theme of exclusion. As I was writing this chapter, I happened to have a different conversation with my brother than the usual “Hi, how are you?” He spoke about how he and my sister-in-law had visited the graves of her parents, and how he went to “see” Sam, his biological father, who was buried in the same area. The next morning, I awoke with a thought I’d never had before. I realized I did not know, had never known, and had never been curious about where Esther, my father’s first wife, was buried. I was unsettled about this, as if she had no one looking after her. She and my father had been unable to have children. The woman behind the rose was Esther. I had never seen a picture of her. She was hidden from me in life, she was hidden from me in death, and she was hidden from me in Garden at Vaucresson.

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Nor had I ever seen a picture of Sam, my mother’s first husband. He, too, remained hidden. Then, recently, a cousin, going through boxes of photos, unearthed a picture of Sam and e-mailed it to me. History changed before my eyes. There was my beautiful young mother with my brother, a smiling toddler, on her lap, and Sam—handsome, smiling Sam—with one arm around my mother, the other around Jeff, encircling his beloved family. In this picture, I am absent. Literally and figuratively, I am not in the picture. Not in this other family, not part of their history—until, and except for, the horrible truth of the early death of my brother’s biological father. The outer scaffolding of this chapter is about the painting. But there is an undercarriage, if you will, though it’s not as firm as it sounds. It’s the more tenuous, fragile chassis of pentimento, the underneath of doubt, uncertainty, and ambiguity evidenced by the artist’s change of heart as he paints over an initial rendering. Pentimento means “to repent”—a composition is altered, but trace elements of the original can be found. This chapter also is about my pentimento: I didn’t see; I saw. Seesawing back and forth until the painting, its pentimento and mine, reveal more to me about my family’s untold story than ever before. What Vuillard chose to camouflage by hiding Lucy behind a giant rose was something in his biography about which he also may have been conflicted. The Austrian psychoanalyst and art historian Ernst Kris’s notion of ambiguity in art takes this very much to heart. He notes that artists produce works out of conflicted or traumatized biographies, which impart ambiguity to their work, and set in motion chain reactions of viewers’ complicated responses, both conscious and unconscious (Kandel 2012). The “truth” of Kris’s theory was “unconcealed” when I learned who Lucy was. She was the cousin of Marcelle Aron, the elevated woman in the pink kimono. She was the wife of Jos Hessel, Vuillard’s lifelong friend and art dealer. She was the lover of Édouard Vuillard. Perhaps Vuillard needed to camouflage Lucy. His biography and mine become conflated in the thorny Garden at Vaucresson. Heidegger and Mills focus on the dialectic of concealment-unconcealment. So, too, the garden has its upside. It is after all an open space; it is its own “clearing.” As Mills (2014, 282) writes, “Being in the open is where revealedness occurs. This

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may metaphorically signify the consulting room, or psychic reality, or the analytic discourse. . . . It seems essential that nurturing the ground—as well as tending the garden—for a clearing to occur determines when and what will reveal itself . . . whatever manifests, is a disclosure.” i a r r i v e wh e re i s tarte d and k now t he pl ac e for t h e f i rs t ti m e

The assignment to view a work of art contemporary with Woolf ’s To the Lighthouse is coming to an end, four years later. Eliot’s line from “Little Gidding” (1942)—“And the end of all our exploring / Will be to arrive where we started / And know the place for the first time”—resonates for me. The close reading of To the Lighthouse prepared me for what was ultimately the close reading of Garden at Vaucresson and of my past. Lily Briscoe’s struggle is also coming to a close. She is about to finish the painting she began a decade before. She is actually turning away from her easel to try to catch sight of the boat in which the surviving Ramsays are finally completing their voyage to the lighthouse. Like me, she is seesawing back and forth, from the canvas before her to the one in her mind’s eye, applying her own layering of the past onto the present, trying to see the boat and not see the emptiness imposed by the death of Mrs. Ramsay, trying every which way to include Mrs. Ramsay in the painting. Lily is able to have her epiphany when the family actually reaches the lighthouse. Simultaneous with their arrival, she has her vision: to paint a line down the center. Does the vertical line represent the lighthouse? Or does it represent a decisive fracturing of past and present, before and after—the painting now the equivalent of the center chapter? She is able to eliminate Mrs. Ramsay, who had been the center of everything. Similarly, I am now able to include Lucy and to “see” that she symbolizes what was hidden in my childhood. Both Lily’s painting and the written word narrate Woolf ’s novel. Both tell the story. Each needs the other in the way that my story could not be told without my dialogue with Garden at Vaucresson. Both Lily and I have our visions—she is painting a canvas, I am looking at one, but both of us make inner voyages in the midst of looking at gardens. My dialogue with a painting and reflective writing over time freed me to discover and metabolize experience. Where past met present I found missing pieces of the puzzle I had tried to solve since childhood. Th is

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“autobiographical gap” (Charon 2006, 70), that space between my ongoing dialogue with a painting and my writing over time, provided me with the necessary reflection I needed to close the gap. We say that, in the process of “writing as discovery,” we write “in the shadow of the text.” In the beginning of this chapter, T. S. Eliot and Henry James were my casual associative references. Clearly, though, the quote from Eliot informs this entire narrative, and Henry James, too, is about to find a deeper footprint. In her seminal textbook What Is Social Casework?, Mary Richmond measures personality growth by increased social relationships. Valuing literature as a means to help social workers to understand a person in his situation, she devotes much of the beginning of her book to the now classic letters of Annie Sullivan, Helen Keller’s teacher. Of these letters, Richmond (1922, 11) says, “There could be no better introduction to social casework,” noting that Sullivan documents Helen’s progress with language and relationships in a kind of double entry chart of both teacher’s and pupil’s reactions. As if to put her final stamp on this proof of personality growth, Richmond returns to her premise about how literature teaches us about the power of relationships, this time citing James: “Relations stop nowhere, and . . . the problem of the artist is to draw, ‘by a geometry of his own the circle within which they shall happily appear to do so’ ” (100). The relations of the two woman, Lucy and Marcelle, could not be contained within the borders of the painting Garden at Vaucresson, even though the artist, Vuillard, created a geometry of his own circle. My beholder’s share broke through the fourth wall, past the camouflage of a giant white rose, to reveal a new understanding and reworking of the past. Recently, with the aid of the Internet, two things happened, things that “unconcealed.” I found Esther’s grave and know that she rests in a garden of perpetual care. I found her nephew, a retired cardiologist. We have been having an e-mail exchange. He was three years old when Esther died. He told me that his decision to become a doctor was influenced by the stories he heard from his uncle, Esther’s brother, about my father. The family revered him. And I knew then that it was my father who had arranged for Esther to be cared for in perpetuity, the way he had cared for all of us. It was like being at a séance, all this new information coming to me now from beyond the grave, through a “mediator” I had never met.

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“Relations stop nowhere.” Just as every story needs listeners, every museum needs viewers to bring their collections to life. That night at the Met when I first saw Garden at Vaucresson, I had no idea the extent to which my wish—“I want to be in the painting”—would be gratified. references

Adams, Laurie Schneider. 1993. Art and Psychoanalysis. New York: Harper Collins. Ankersmit, Frank. 2005. “Subjective Historical Experience: The Past as Elegy.” In Sublime Historical Experience. Stanford, CA: Stanford University Press. Auchincloss, Elizabeth, and Eslee Samberg. 2012. Psychoanalytic Terms and Concepts. New Haven, CT: Yale University Press. Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Didi-Huberman, Georges. 2003. “Before the Image, Before Time.” In Compelling Visuality: The Work of Art In and Out of History, ed. Claire Farago and Robert Zwijnenberg. Minneapolis: University of Minnesota Press. Eliot, T. S. 1942. The Four Quartets. http://www.davidgorman.com/4Quartets/. Heidegger, Martin. 2006. On the Origin of a Work of Art. Trans. Roger Berkowitz and Philippe Nonet. http://www.academia.edu/2083177/The_Origin_of_ the_Work_of_Art_by_Martin_Heidegger. Hiraide, Takashi. 2001. The Guest Cat. New York: New Directions. Kandel, Eric R. 2012. The Age of Insight. New York: Random House. Knafo, Danielle. 2012. Dancing with the Unconscious: The Art of Psychoanalysis and the Psychoanalysis of Art. New York: Routledge. Koselleck, Reinhart. 1985. “ ‘Space of Experience’ and ‘Horizon of Expectation’: Two Categories.” On the Semantics of Historical Time. Cambridge, MA: MIT Press. Kubler, George. 1962. “The Nature of Actuality.” In The Shape of Time: Remarks on the History of Things, 16–23. New Haven, CT: Yale University Press. Marion, Paola. 2012. “Some Reflections on the Unique Time of Nachtraglichkeit in Theory and Clinical Practice.” International Journal of Psychoanalysis 93: 317–340. Mills, Jon. 2014. “Truth.” Journal of the American Psychoanalytic Association 62 (2).

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Moxey, Keith. 2012. “Time and the Image.” Graduate seminar presented at Columbia University, New York, Fall. Richmond, Mary E. 1922. What Is Social Casework? An Introductory Description. New York: Russell Sage Foundation. van der Kolk, Bessel A. 1996. “Trauma and Memory.” In Traumatic Stress: The Effects of Overwhelming Experience on Mind, Body, and Society, ed. Bessel A. van der Kolk, Alexander C. McFarlane, and Lars Weisaeth, 279–302. New York: Guilford.

3

Another Kind of Witnessing NARRATIVE MEDICINE AND THE TRAUMA THERAPIST



k r is te n sle sa r

For it is important that awake people be awake, or a breaking line may discourage them back to sleep; the signals we give—yes or no, or maybe— should be clear: the darkness around us is deep. w i l l i a m e . s ta f f o r d , “A Ritual to Read to Each Other”

h ow i me t narrati ve m e d i c i ne

in social work in the spring of 2004. That summer, in another part of the country, five-year-old “Jackie” was playing in the living room while her little brother, barely three, wandered outside to the family’s backyard pool. His lungs filled fatally with water before Jackie and her parents realized where he was. After that, everything changed. Jackie’s parents buried themselves in work, stayed busy however they could, and rarely spent time with her. Privately, she worried that they would have preferred that she had died instead—because boys were more important? She couldn’t make them smile anymore. I’ve always wondered if she thought her brother’s death was her fault; even a five-year-old is susceptible to survivor’s guilt. Soon after, Jackie’s babysitter, the seventeen-year-old son of a family friend, raped her. Jackie did what many victims of violence do: kept her head down, completed all her homework and chores, wore long sleeves and pants even in warm weather, showered as often as she could with hot water and soap, and—I imagine—died a little inside each time she was left alone with him. Like some adolescent Raskolnikov, he eventually confessed. He

i received my degree

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was arrested and incarcerated, too briefly, and Jackie and her parents moved to New York City in 2005. That’s where Jackie and I met. I was her assigned therapist at a hospitalbased domestic violence and sexual assault program in New York City. By the time I began working with her, I was two years into full-time clinical work with survivors of sexual assault, abuse, and domestic violence. She was not my first—or even my youngest or most traumatized—client. Still, Jackie was different, more affecting. She came once a week after school and usually ate her after-school snack, always offering me some. We sat on the floor and played together or drew. When she discovered the Where’s Waldo? book in my office, we took to combing through it—not for Waldo, but for all the tiny people drawn without enough clothes. Even the word naked bothered Jackie. So we fashioned full-length jackets for the scantily clad, using tape and yellow sticky notes. Jackie and her parents arrived one day with the news that they were moving south; it was our last session. We made cards for each other and ate sweets her mother brought. We sat and smiled, trying to speak through sadness and mutual shock at the abrupt ending. And then she was gone. It was all too soon; there was so much left undone. At the time, I felt only immense sorrow and failure. I took all of her drawings and cards home and locked them away, locked away everything about her I could, and cried. A year later, I was coordinating another domestic violence and sexual assault program and carrying, again, a full caseload of survivors of sexual assault, incest, and domestic violence. Every case was awful in its own way and the workdays were long and heavy. We did not have clinical supervision, nor did we receive much institutional support, other than coveted office space. We did not support each other. In between psychotherapy sessions and shifts in the emergency room with the recently assaulted, I hid in my office, in the endless statistics and progress notes. There was too much work, too much trauma, and too little trust among us. I preferred sessions, one after another, for I felt present and useful and connected to the person before me. Everything else—the insensitive medical staff, inane staff meetings, and endemic violence throughout the city—was an impossible, Sisyphean mass. One afternoon in July of 2007, I attended the first narrative medicine group for social workers at a major metropolitan hospital. It was here that I met Dr. Rita Charon, executive director of the Program in Narrative Med-

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icine at Columbia University. We were a small group—maybe only eight of us—gathered around a table. Dr. Charon introduced us to narrative medicine and explained the premise of such groups. Then she instructed us to write for a few minutes in response to a prompt. This is one of the most basic and effective practices in the quest for narrative competence, requiring attention (an openness to and awareness of the Other), representation (the reach to articulate and reflect one’s experience), and affi liation (contact with and investment in the Other) (Charon 2006). The prompt was, “Write about a time when you were at your clinical best.” I had never been asked this question, and I felt immediately selfconscious about answering. It didn’t matter. With so little time, we bowed our heads, pens in hand. Ultimately, spontaneity undid whatever comparisons and competitive spirit would otherwise exist. I did not even consider how little we knew of one another; what mattered was the written. We took turns reading aloud our responses, Dr. Charon guiding our efforts to respond to each other’s work. I had written about Jackie, and read it with an ill-fitting stoicism. She is 7. She is small, a petite child, yet she fi lls the entire room. I can tell that she tries hard to appear even smaller. She does not want to be seen. But then she smiles and speaks and pulls out her after-school snack and the room radiates with her energy. I feel that I see her. I see her kindness and generosity. I see how she cares about those around her. I see how she hides herself amongst her peers so that she will not be singled out again. This child of 7 has been raped. She has been torn apart in the most violent way. But she is still sturdy, she still smiles, she still plays with toys. This child of 7 is a giant, a superhero, a supreme being who is wise beyond this world. Beyond her years and beyond mine. I will not ask her about what happened; I will play her games. I will allow her privacy and space and I will believe her without her ever having said a word. We sit and look through the Where’s Waldo? book and cover up the near-naked people because they bother her. So does the word naked. I know why we do this; she knows that I know. And I am relieved that some things do not need to be said. It is enough that we are here, at this very moment, covering the naked bodies, covering up her naked body.

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I don’t remember what Dr. Charon or any of the group members said after that. Instead, I remember someone leaving the table to cry in a corner of the room; I remember Dr. Charon’s audible exhalation, this wise, wordless recognition; and I remember feeling something open up, just a little, in my chest. For the first time in a while, I felt seen. Until the day I left that job, I tried not to miss any of Dr. Charon’s groups. I attended a narrative medicine workshop in the summer of 2009, and a few months later, while working full time, I enrolled in the inaugural Master’s Program in Narrative Medicine. Since graduating in 2011, I’ve had the opportunity to facilitate small groups and to lecture at narrative medicine workshops. t h e effe c ts o f trau m a e x p o s u re

Many medical and mental health providers have long understood that day-to-day exposure to physical and psychological trauma, human suffering, and undignified death carry certain risks, a certain occupational hazard. Perhaps it starts with a moment of irritation with a particular patient, or a creeping sense of inefficacy on the job. And then it grows, like a cancer— an insidious sense of defeat, of daily devastation, of frustration. It can end in quitting once-loved work, in getting fired, in alcoholism, or in divorce. Sometimes it just stays there, a low-level malignancy, for years. In the last century, Carl Jung spoke of an “unconscious infection” of the therapist by virtue of working with traumatized persons, a way of catching the anguish from one’s patients (see McCann and Pearlman 1999, 503). He spoke of a vicarious trauma response before the term “trauma” was regularly applied to psychological and not just physical injury. At the time, psychological trauma was almost entirely attributed to combat veterans who were constantly fearful, anxious, jumpy, and withdrawn. Even then, only a minority of World War I and World War II veterans were thought to suffer from “shell shock” or “war neurosis.” The Vietnam War shifted this perspective, just as the women’s liberation and the battered women’s movements drew attention to the prevalence of domestic and sexual violence in the lives of women—and the unnerving ubiquity of trauma in the general population. The terrorist attacks on September 11, 2001, launched the topic of trauma into the forefront of discussion in the United States and elsewhere, and scholarship on psychological trauma has developed globally over the past several decades.

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As knowledge of trauma has increased, so has our understanding of what it means to care for those who suffer. In the 1990s, the concept of compassion fatigue, defined as “a state of exhaustion and dysfunction— biologically, psychologically, and socially—as a result of prolonged exposure to compassion stress” (Figley 1995, 253), was first applied to the emotional overwhelm experienced by nurses caring for trauma-related injuries. Around that time, my mother worked at Sloan Kettering as an RN, caring for HIV-positive people with Kaposi’s sarcoma. I recall how devastated, how emotionally exhausted, she was at the end of each workday. She loved and thrived at her job, and it hurt her nevertheless. I understand this now. According to Charles Figley, one of the first scholars to research and write on this subject, “those who have enormous capacity for feeling and expressing empathy tend to be more at risk of compassion stress” and they are “most vulnerable to this mirroring or contagion effect” (Salston and Figley 2003, 169). Compassion fatigue is now a widely acknowledged phenomenon that frequently occurs in trauma workers, first responders, and caregivers. Such medical and mental health providers begin to experience various emotional and cognitive symptoms due to their exposure to the suffering of others. It looks like this: cynicism; decreased intimacy with self and others; feeling ineffective; increased sensitivity to violence, pain, and suffering; becoming overly involved in work; a lack of interest in (or lack of energy for) others’ needs; avoidance of interactions with clients; irritability; and decreased efficacy, curiosity, or sense of fulfillment in one’s work. Given a care provider’s “chronic unavailability and emotional withdrawal,” compassion fatigue also affects partners and family members (Salston and Figley 2003, 169). Just ask mine. A similar concept is burnout, the process of becoming emotionally exhausted from job strain, from decreased fulfi llment or sense of achievement in one’s work, and from the accumulated effects of intense contact with patients (Figley 1995; Salston and Figley 2003). It’s not just job stress, the kind that can be mended with a long weekend or a raise in salary. Burnout is much more about workplace, environmental, and bureaucratic systems that preclude caregiver support and well-being. In recent years, health maintenance organizations and changing health care policies have increased pressure on medical and mental health providers to see more patients in significantly less time, often with fewer resources and increased paperwork.

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Meanwhile, federal and state budget cuts have reduced grant funds available to not-for-profit social service agencies—many of which are primary providers of mental health services to crime victims—limiting crucial services. Increasing pressure on providers is simultaneous with increased burnout, ill health, and resentment on the part of the provider (Irvine 2009). Burnout is a threat when emotional and corporeal stakes are high. It is a process, a slow-burning fire that gradually but fiercely ruins the structure of one’s self. Like compassion fatigue, there are many physical and emotional symptoms of burnout that wreak havoc on care providers’ lives. Burnout obviously has negative behavioral and work-related consequences—aggression, cynicism, defensiveness, substance abuse, decline in performance, withdrawal from clients and/or colleagues, or distractibility (Figley 1995; Salston and Figley 2003). Patients are ultimately on the receiving end of compromised providers, who may provide poor patient care or commit malpractice or ethical breaches. Burnout is correlated with high rates of medical student dropout, physicians quitting, and, most ominously, physician suicide. A September 2014 op-ed in the New York Times reported, “Physicians are more than twice as likely to kill themselves as nonphysicians (and female physicians three times more likely than their male counterparts). Some 400 doctors commit suicide every year” (Sinha 2014). Although I’m unaware of suicide and other statistics relating to burnout among mental health and social service providers (particularly among social workers), it is common knowledge that employee turnover rates are incredibly high within the crime victim services. After repeated exposure to patients’ trauma, some caregivers develop symptoms of post-traumatic stress disorder. Previously, secondary traumatic stress, often used interchangeably with the terms “vicarious traumatization” or “secondary traumatization,” encompassed this symptom cluster. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders acknowledges that people exposed to repeated or extreme contact with details of a traumatic event, as occurs with first responders and other helping professionals, are at high risk for traumatization; unlike in prior editions, their exposure is now considered to meet criterion A for post-traumatic stress disorder. The distinctions among burnout, compassion fatigue, secondary traumatic stress, and vicarious traumatization are blurry, perhaps inconsequen-

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tial for some. In Trauma Stewardship, van Dernoot Lipsky and Burk (2009) combine these concepts into “trauma exposure response.” Stamm (2010), on the other hand, frames burnout and secondary traumatic stress as the two primary components of compassion fatigue. As yet, none of these terms is recognized as diagnostic or medical, though some providers meet criteria for post-traumatic stress disorder or other diagnoses. Despite how “normal, predictable, and inevitable” such responses are for medical and mental health providers, there is still significant stigma and reluctance to admit experiencing them (Salston and Figley 2003, 169). As Arthur Frank (1993, 106) writes, “The person who was ill can speak of having lived through the disease; what the caregiver lived through is less easily expressed. Society has few terms to express the experience of caring, so it goes unrecognized.” a fa u lt in s e lf -c are

It is true that my career thus far—all ten-plus years of trauma work in medical/mental health and forensic settings—is punctuated by fulfillment, love, triumph, and discovery. But it is also true that these years are marked by the ebb and flow of trauma exposure response and subsequent illness, marred relationships, and melancholy. Laurie Anne Pearlman, Karen Saakvitne, Figley, and others have created various assessment tools and prescriptions for self-care and wellness. From time to time, I’ve completed some of these assessments, such as the Secondary Traumatic Stress Scale (Bride et al. 2004) and the Compassion Satisfaction/Fatigue Self-Test for Helpers (Figley 1995). Another is the Professional Quality of Life scale (Stamm 2010). In these assessments, one finds statements like “I feel invigorated after working with those I help,” “I am preoccupied with more than one person I help,” and “Reminders of my work with clients upset me.” Each time, my levels of compassion fatigue and/or secondary traumatic stress have been in the moderate to extremely high-risk ranges, while my compassion satisfaction scores—the degree to which I experience careersustaining fulfi llment—are high as well. In short, I love the work that I do, and the work I love hurts me. I am never particularly surprised by the results. I am struck, instead, by the feelings I experience while completing the assessments. On the one hand, I want my compassion fatigue scores to be higher, as if greater compassion fatigue indicates the extent to which I am passionate and dedicated to those I serve—a validation of my hard

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work. On the other hand, high scores embarrass me, as if they spell out my failures and unprofessionalism. Neither of these musings is accurate—or healthy. Rather, they herald the self-perpetuating gaps and stigma around caregiving and self-care. Whenever I’ve expressed or admitted to symptoms of secondary traumatic stress or compassion fatigue, colleagues have faulted me for “taking on too much” (even while handing me additional responsibilities or clients), and laypersons have urged me to quit (sometimes in rather blamethe-victim tones). There seems to be little space for loving—and being skilled at—something that must hurt. Frequently, we shame one another for failing to take care of ourselves, accusing one another of poor boundaries, imbalance, and unprofessional client-centeredness. Yet therapists and other medical providers also frequently pathologize colleagues’ trauma exposure response, calling into question their competence. We might accuse others of being weak or not cut out for the field, yet we also are quick to label others as selfish, indulgent, or not patient-centered when basic selfcare principles are applied. Unconsciously, self-care may even be construed as immoral, since medical ethics center entirely around ethical care and treatment of the sick and of research subjects (Irvine 2009). The principles of biomedical ethics—autonomy, nonmaleficence, beneficence, and justice— are applied by providers, not to them. This is the inevitable mixed message in clinical settings: You are responsible to care for yourself on your own time, but your well-being cannot come at the expense of fellow clinicians or of clients. Clients come first; the organization comes first. When and how we attempt self-care is up to our discretion; likewise, we are very much alone in achieving and maintaining it—isolated from institutional and social supports and from one another. One of the most succinct and well-known models for prevention and treatment of compassion fatigue and secondary traumatic stress is Saakvitne and Pearlman’s (1996) “ABCs of self-care.” A, B, and C refer to awareness (of one’s needs, limits, emotions, and resources); balance (between work and personal life, and within job tasks); and connection (to oneself, colleagues, and purpose). The ABC model is pragmatic and thorough, as is the companion Self-Care Assessment Worksheet, which serves as a reminder to, for example, “Take time off when needed” and “Negotiate for your needs (benefits, pay raise).” Journaling (along with other forms of expression) is central to self-care and self-reflection, as it is for primary victims of trauma (see Brison 2002;

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Frank 1995; Herman 1992; MacCurdy 2000; Raine 1998; van Dernoot Lipsky 2009). Still, so many elements of self-care are contingent on others and on one’s workplace. Many times, I’ve been able to arrange my schedule with diverse cases and breaks—a daily protective shield. Even so, all my witnesses to homicide-by-stabbing come in on Tuesdays, and my adaptation to this scheduling awfulness is to use darkly humorous labels like “Stab Tuesday.” For the most part, protection from compassion fatigue and burnout is this elusive, utopic thing. It is simplistic but all too common for providers suffering from or on the verge of compassion fatigue to find fault with their feelings rather than with bureaucratic or institutional pressures or with trauma exposure itself. If compassion is construed as too much care, too much connection, then it is seductive to look to disconnection for protection. Pulling back is a natural, perhaps instinctive response to burnout and compassion fatigue, not unlike withdrawing a hand from a flame. Many think we practice better medicine when we are detached—and many prefer that our patients be detached, too. But I don’t believe care is possible in such encounters. There may be highly effective treatment, but not good medicine; medicine without care is half-medicine. It is not true that our authentic, compassionate selves prevent us from practicing objectively good medicine. Nor is it true that emotional detachment, cynicism or perfunctory medical practice prevents burnout and compassion fatigue. Until recently, I had routinely witnessed—even expected—such emotional detachment among medical providers but had assumed (hoped?) that it was uncommon among fellow psychotherapists. And then something happened. a n ot h e r li ttle g i rl

January 2014. It was the day of a snowstorm—the New York City kind, when schools are closed and the subway stops working. By early afternoon, the district attorney’s office (the site of my new job) was mostly empty and I was the only therapist left in the building. Just after two p.m., there was commotion in the hall: pleading voices, shoes squeaking on the floor, a slammed door. A child ran into our playroom and hid behind a chair. She was young and angry. Her name was “Angel.” She had been interviewed for nearly

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four hours but she didn’t want to go home. In fact, she refused to leave with her mother and wanted, instead, to stay with the assistant district attorney who was handling her case. I found out later that Angel had been raped repeatedly by her stepfather, for years, and had been forced to watch (and videotape) him raping her younger sister. Later still, we all learned that Angel’s mother had known and had done little to protect her daughters. But that day there was a terrible snowstorm and a little girl fi lled with rage hiding in our office. She refused to go home. Though her mother and I were able to get Angel to the lobby of the district attorney’s office, where we wouldn’t be alone, she did not stop. Angel preferred to die rather than go home. Whenever she could, this little girl bolted for the doors, willing her way into traffic. Or she threw herself against the marble floors. She fought, she screamed, she kicked, she punched, she bit. I enlisted two police officers to help. Afraid to hurt her, they were gentle and unsure. They called repeatedly for an ambulance, and as I sat on the floor with my arms around Angel, one officer stood guard by the doors to bar her escape while the other knelt behind me and shielded my head with his hands each time she head-butted me or kicked back against the floor to loosen my grip. She did not stop for three hours. For three hours, the ambulance did not come. Before leaving work that night through the slush and snow, I submitted this incident report to my supervisor: At approximately 14:20, Child ran into therapy room (door was open). Child was quickly followed by ADA [assistant district attorney] and Child’s Mother. ADA reported that she had been meeting with Child but Child was refusing to return home to Mother. SW [social worker] met briefly with Child in playroom and engaged Child in play. Child reported that she did not want to go home with Mother and wanted instead to go home with ADA. Child denied being afraid of Mother or other household members; Child denied being abused at home or being threatened with abuse. When SW attempted to lead Child out to waiting room with Mother, Child refused and stated she would not go home with Mother . . . Mother reported that she is pregnant and afraid of injuring herself. . . . At Mother’s request, SW called Security Desk for assistance. Security Desk reported that they were unable to send the on-duty detective to floor to assist . . .

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With SW’s help, Mom restrained Child and carried her to elevator with plan to take Child home by taxi; this SW accompanied Mother and Child to lobby. In building lobby, Child began to run around, attempting to exit building, or reenter elevators, while screaming. When Mother attempted to restrain Child, Child kicked and punched Mother. Mother unable to restrain Child; Child continued to attempt to run out of building while moving in erratic, thrashing motions. Child struck table and chairs in waiting area. With Mother’s consent, SW restrained Child in seated position on floor. Child continued to resist and made ongoing attempts to run out of building and hurl her self onto floor or against furniture. SW requested assistance from two Police Officers from the [X] Precinct who were stationed outside building. Officers also attempted to calm Child, and then restrain her. Child continued to scream, kick, punch and throw herself on floor and at wall. SW conferred with Mother and officers and requested that ambulance escort Child to pediatric psychiatric emergency room to provide safe transfer, psychiatric evaluation and potential sedation of Child to prevent harm to self and others. Child yelled at various times, “I hope I die” and “I don’t care if I live” and “Mom hates me and wants me to die.” Child also made statements to SW and police officers such as, “I’m going to kick you in your fucking teeth.” Due to Child’s ongoing violent and erratic behavior, SW used one-person seated hold with Child. At this point, Officers called for ambulance (app. 15:00). Child continued to thrash and resist. SW attempted to release Child, Child tried to run out of building then kicked and punched Officers when they blocked her path. Mother consented to have SW continue to use one-person seated hold. Child head-butted, scratched and bit SW during throughout this period. When Mother attempted to intervene, Child repeatedly kicked and punched Mother; as many strikes landed on Mother’s stomach, SW and Officers agreed to continue to engage SW in seated hold with Child. At no point was Child injured, smothered or grossly inhibited. Of note: bite to SW’s hand resulted in SW bleeding, some of blood was observed on Child’s white undershirt. Officers occasionally provided assistance to SW to prevent injury to SW and Child. Officers and Mother also made several calls to 911 and to Command to request ambulance. At approximately 17:30, Officers [X] and [X] of the [X] Precinct arrived. Officers reported that due to backlog, ambulance would not arrive . . .

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What I did not write in the report was how difficult it was to hold Angel tightly without hurting her, nor did I write how isolating and surreal it was that not one person from the district attorney’s office—neither the assistant district attorneys who walked through the lobby doors nor the security personnel who sat at the information desk—offered to help. Perhaps they didn’t know how, but neither did we. We were a spectacle: two police officers, a screaming and fighting child, a disheveled therapist restraining a little girl. I did not write in the report that Angel sometimes paused her screaming and struggled against me in silence, sweat beading at her forehead, hairs sticking to her skin. In those moments, I whispered to her, “It wasn’t your fault” and “Just breathe” and “I’m sorry,” over and over, a terrible lullaby on the cold and unforgiving floor. I did not write that I feared she’d think of me as another adult who had hurt her—that I had failed her or somehow missed something. The next day, my supervisor called me on the phone. She asked about my wounds—whether I was injured. And then she asked this: “Do you think you could have done anything differently?” And this: “I know you wrote this in your report, but can you tell me again what happened? Did you call security?” We did not meet in private to discuss this or any other part of my job for two weeks; our weekly supervision was replaced with other tasks. It would be almost a month before we broached the topic again. I stayed away from work for two days. By the time I returned, the focus at work had shifted away from Angel (she was admitted to a psychiatric facility) and from me (business as usual) and onto a detective who had, unbeknownst to all at the time, sat and watched everything transpire, though it was his responsibility to help. The heads of security met with my supervisor and me and validated my account. After all, nearly every minute of the threehour ordeal had been captured—albeit silently—on security cameras. The meeting with security was somewhat cathartic, though incomplete. They saw the tireless struggle; they saw her suicidal efforts; they saw the police officers cup my head in their hands to keep it from slamming into the floor; they saw the assistant district attorneys and personnel walk back and forth without ever approaching. It felt reassuring to know I had not invented or exaggerated—that this thing really had happened. Still, other than the bandage on my left thumb, they did not see my hurt. At the time, I could not convey it.

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For weeks thereafter, I entered the building wearily and self-consciously. Everything about the lobby, the elevators, the office had changed for me. I was changed. Between sadness and sessions with clients, I recognized these signs: depression, intrusive thoughts, irritability, hopelessness, exhaustion, frequent headaches, sleep disturbance, avoidance. It was like that for a while. The detective was eventually fired, and for several months there was additional security in the building. The assistant district attorney who had “dumped” the family on me was reprimanded. The bite wound on my hand healed. Ultimately, though, the incident was treated as an anomaly, a convergence of unlikely factors. I noticed how quickly—perhaps desperately— my colleagues needed it to be so. t h e fa i l u re to wi tne s s

I recognized, as if through another’s eyes, the trouble people had around me, the things that got in the way. Like how some colleagues and security personnel asked me, over and over again, to repeat the events and retrace my steps; how others seemed almost angry with me, or angry on my behalf; how many expressed shock and awe and insisted “no one else could have handled it better.” Mostly, though, those around me at work avoided the subject. I wanted to talk about the heaviness of it all, the enormity. I looked for space to say aloud that I felt both helpless and grateful to the two police officers, that those three hours were surreal and excruciating, that I was ashamed of the moments in which I had felt anger and impatience with Angel, that I had impressed myself by remembering some obscure therapeutic hold technique from a training more than ten years previous. To make sense of this self- and other-imposed silencing, I drew from the work of Holocaust testimony scholar and psychoanalyst Dori Laub (assigned in narrative medicine workshops). Laub (1992) discusses some common obstacles to bearing witness, including a sense of outrage and anger, directed at the storyteller; total withdrawal or numbness; a flood of awe and fear, such that we endow the speaker with sainthood and extrahuman power, which keeps her at a distance; foreclosure through facts or an obsession with fact-finding; or hyperemotionality. Witnessing and testimony are not about facts but about experience, yet experience cannot be conveyed in the forms typical of communication in medical and mental

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health settings. Medical records, progress notes, process recordings, incident reports, case descriptions, and conferences transmit empirical information and chronologies. What I wanted—desperately—was to be witnessed. Laub (1992, 85) writes, “What ultimately matters in all processes of witnessing . . . is not simply the information, the establishment of the facts, but the experience itself of living through testimony, of giving testimony.” In this process, the “listener takes on the responsibility for bearing witness that previously the narrator felt he bore alone.” Witnessing is an action, a demand made and fulfi lled; the degree to which the listener fulfi lls this responsibility distinguishes witness from bystander. This is not unlike the wisdom of Judith Herman (1992, 135): “The therapist is called upon to bear witness to a crime. She must affirm a position of solidarity with the victim. This does not mean a simplistic notion that the victim can do no wrong; rather, it involves an understanding of the fundamental injustice of the traumatic experience and the need for resolution that restores some sense of justice.” The irony that I wanted (I daresay, needed) precisely what it is that we attempt to do with every single one of our clients was not lost on me. All too often, clinicians don’t know how to talk to one another. Conversations about our work in clinical supervision or case conferencing are censored. Abraham Verghese (quoted in Frank 2004, 341) says, “We are horribly alone. The doctor’s world is one where our own feelings—particularly those of pain and hurt—are not easily expressed.” First, we tend to discuss clients in the context of case presentations or reviews—and mostly because of the degree to which they are intellectually interesting, clinically challenging, or otherwise problematic. Th is may spur providers to be curious and to brainstorm with one another, but on an intellectual, diagnostic plane. Second (and especially with regard to traumatized patients), discussion of difficult cases tends to linger on the horror of cases—not on the reasons why some cases feel more horrible than others to some clinicians but on just how acutely awful or difficult they are. Still, the subject of the discussion is the client, or the ways in which the client is difficult to treat. Third, I’ve found that fellow clinicians are loath to explore and sit with one another’s doubt, pain, and mistakes. Providers frequently jump in and attempt to rescue others from self-critique and confessions. In reality, providers are often too uncomfortable tolerating their own doubt, failures, and tough (meaningful) moments. Failures, in fact, are readily attributed to medicine, or to the very bodies and minds in which they occur: “The

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patient failed to respond to treatment” or “The patient did not comply.” Successes, too, are more likely credited to treatment than to those who provide it. Good clinicians are “just doing their jobs.” Those who accept credit forthrightly are arrogant, eyed dubiously. There doesn’t seem to be a middle ground between “success” and “failure.” We have scant means of viewing our cases as neither this nor that, nor do we know how to hold on to or study our work with patients when it takes everything out of us. We are not trained to bear witness to one another. Indeed, Marsha Linehan, a renowned psychologist, states, “At times a therapist needs help from the consultant not to understand the meaning, but to hold the despair and fear. . . . The consultant can offer empathy and respect, and, in a sense, offer to hold vigil with the therapist” (quoted in Pearlman and Saakvitne 1995, 367). If clinicians do bring themselves into the discussion, it is usually through the clinically significant but limited scope of transference– countertransference. Unless countertransference reactions are observed, examined, and understood by the therapist, they can very easily compromise treatment, diagnosis, and the boundaries between therapist and client. Traumatic countertransference is more likely if the therapist has a personal trauma history or loss that is in some way similar to that of the client. But countertransference—even of the traumatic kind—is not the same as or mutually exclusive with compassion fatigue or burnout. Trauma exposure responses can and do occur in clinicians without any trauma history or unresolved personal conflict (McCann and Pearlman 1999, 502). Countertransferential reactions also are typically short term and confined to work with a specific client, whereas compassion fatigue and burnout (or secondary traumatic stress) are more pervasive (499). Most importantly, the limited frame of countertransference pathologizes the clinician’s experience and obfuscates the reality of trauma exposure: it hurts (Salston and Figley 2003). There are so many limits to and gaps in how we conceptualize our professional selves. We fail to acknowledge that these professional selves are entrenched in all that makes up who we are. We deny—and many around us collude in this denial—that we are real people, just as permeable as our patients. Arthur Frank (1993, 71) writes about this from the patient’s perspective: “I needed others to recognize not only that I was suffering, but also that we had this suffering in common. I can accept that doctors and nurses sometimes fail to provide the correct treatment. But I cannot accept

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it when medical staff, family, and friends fail to recognize that they are equal participants in the process of illness.” The things that make medicine better for patients are also the things that make it better for caregivers. For the most part, what is good for patients is good for care providers. Somehow, we’ve pitted some of these central things against one another, as if patient care were really, truly a separate entity from clinician care, as if medicine were something one-sided: providers deliver it; patients receive it. Not so. Medicine done right is a co-construction. Medicine done right allows both patients and providers to give and to receive. n a r r at i v e m e d i c i ne g ro u p s : wri tin g a n d w it n e ssin g

Two months after the incident with Angel, I ran into one of the police officers who had helped me that afternoon. He recognized me immediately. As if it were only the day before, he spoke of the event nonstop, overwhelmed. He admitted to thinking about that day—about her—all the time, to having nightmares. I wanted so much to hug him; I wish I had. We spoke briefly, moments that I’ve held on to tightly. Shortly thereafter, I facilitated a narrative medicine workshop. As is customary, the facilitator responds to the writing prompt along with the participants. The prompt was to complete the sentence, “What am I doing . . . ?” I wrote about Angel. What am I doing inside this lobby, this building, with the snowstorm raging about? I am sitting on this marble floor—an unwelcome seat—wrestling with a seven-year-old. She fights me, she fights the will to live, she fights the handles on the door, her mother, the police here, so that she can run out into the storm, into traffic, to die. I hold her against me as gently as I can, all muscle and love, whispering to her enraged ears: “It’s okay.” “Just breathe.” “It was not your fault.” “I’m sorry.” She fights back, exorcist child, screaming and struggling in ways she could not scream and struggle before.

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What am I doing on this threshing floor? Flushing out all the rapes, all the violence and fear and rage. Fleshing out that man’s body, his hands, his claws, his parts, away from this little girl’s body. I am trying to save more than a life, maybe even a soul.

Three months had passed. It was the first time I had written about the incident, other than the incident report. It was the first time I felt I could, because I could write about whatever I wanted. I was not bound to the precision, chronology, and professional-speak of a progress note. I could write about Angel, or myself, or the sharpness of the lobby floor, or the curl of Angel’s hair made damp by sweat. Even more, the spontaneity of the exercise unlocked what it was I needed to write, as if unlocking imagery and adjectives from some vault. I was able to write because I was surrounded by colleagues who allowed themselves to listen—to be included—and, in doing so, allowed me to speak. As Laub (1992, 70) writes, “Bearing witness to a trauma is, in fact, a process that includes the listener.” Every member of that group bore witness to me, to Angel, to the police officers, and to themselves. As with the first time I encountered narrative medicine, something opened up in my chest. Developing and enhancing narrative competence is like the recruitment of muscle fibers, such that the muscles of attention, representation, and affiliation become stronger, faster, and more agile. Like muscle, they reflect our capacity for caregiving, protect and improve it. When we fine-tune these skills, the dividends are multifaceted. The self-reflective capacities that are built and emboldened by this kind of practice lead to better patient care. In her foundational text Narrative Medicine: Honoring the Stories of Illness, Charon (2006, 34) writes of a particular experience during her medical training: “With more sophisticated narrative skills than I had as an intern, I would have been able to articulate my own fear of incompetence and lack of clinical judgment and therefore seek better guidance from my supervisors” (see also Herman 1992; Taylor 1991). Importantly, Charon makes it clear that her emotional awareness—and possibly the emotions themselves— enhance her clinical practice rather than distracting from it. Beyond this dividend, though, my experience has been that the very skills we work so diligently to attain with and for our patients are also for ourselves. In responding to writing prompts, we are immediately reflective, creative, and singular. Even if we are writing about patients or medical

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encounters, we invariably write about ourselves, beyond the constraints of the medical note. The process is self-revealing and self-creating. As philosopher Charles Taylor (1991, 62) writes, “Revelation comes through expression. . . . Self-discovery requires poiēsis, making.” We see things differently, and see different things. Jerome Bruner (quoted in Charon 2006, 69) states this clearly: “It is through narrative that we create and re-create selfhood.” We come closer to answering the most urgent questions, like How do you want to be as a clinician? or How will you continue to love your work, even when it hurts?In his recent article “For the Young Doctor About to Burn Out,” Gunderman (2014) exclaims, “Nothing is more needed than nourishment for the imagination.” After trauma, this narrative process is more urgent. The act of writing about trauma is an act against trauma. “Saying something about the [traumatic] memory does something to it” (Brison 2002, xi). During narrative medicine groups, we read together, write together, and listen together. The attention is on the writing; the focus is on the text: tone, syntax, genre, language, and voice. We are often surprised by what we write and how. We witness the representations of ourselves through an “autobiographical gap” that is far safer and more comfortable than witnessing ourselves directly. We hold these pieces of writing out in front of us and think about them in this benign ritual, thereby protecting our personal and professional boundaries. In such settings, clinicians have the space— without risking ridicule or censure—to reflect and express their emotional and physical experiences of caregiving. Given the stakes of suicidality in medical students, along with the perpetual challenges of burnout and compassion fatigue among clinicians, there is urgency in allowing this space. On medical education, Sinha (2014) writes, “We need to be able to voice these doubts and fears. . . . A medical culture that encourages us to share these vulnerabilities could help us realize that we are not alone and find comfort and increased connection with our peers. It could also make it easier for residents who are at risk to ask for help. And I believe it would make us all better doctors.” How closely her words echo Charon’s reflections on her own intern days. Medical students also supported these sentiments in a recent small qualitative study on the uses and dividends of narrative medicine in medical education (Arntfield et al. 2013). Narrative medicine groups are not support groups, but they are supportive. Narrative medicine is not therapy, though it is therapeutic. Just as trauma survivors can only heal vis-à-vis relationships with others—Judith

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Herman’s edict—so must care providers practice and heal in the presence of helping others. Susan Brison, professor of philosophy and survivor of rape and attempted murder, discusses the necessity of community, of witnessing, in one’s process of healing. She writes, “It is not sufficient for mastering the trauma to construct a narrative of it: one must (physically, publicly) say or write (or paint or fi lm) the narrative and others must see or hear it, in order for one’s survival as an autonomous self to be complete” (Brison 2002, 62). Narrative medicine groups allow for this witnessing— and its completion. Here, so many of the ABCs of self-care, those elements that buffer against compassion fatigue and burnout, abound. Narrative medicine practices connect us to our reasons for entering the medical and mental health field. Through them, we are better able to feel efficacious, respected, appreciated, and loved by our patients and our colleagues, all crucial to sustaining our work. We may become tired and frustrated, but we do not burn out, from work that feels good. Otherwise, we do damage; we do not acknowledge the costs of what we do or the very specific ways in which our singular selves are brought to bear on the work we do and the connections we form. This is what hurts us, what ultimately drives us to our professional (and sometimes personal) end. In narrative medicine practice, we marvel at the discoveries formed when pen meets paper. There is wonder here—about each other and ourselves in this context. There is wonder about patients and wonder about the co-construction of healing that clinician and patient create. Wonder is the opposite of burnout and professional overwhelm. Witnessing allows this wonder—feeds it, gives us grist for the mill. Through narrative practices, we come to notice something essential to our identity and performance as clinicians. We recognize our own sadness, pain, doubt, fear, and shame— and joy, relief, pride. We make space for the suffering experienced by everyone in the room. When we fail to acknowledge who we are and all that we do as providers, every moment of our professional being is an event without a witness. This is a mistake we cannot afford. references

Arntfield, Shannon, Kristen Slesar, Jen Dickson, and Rita Charon. 2013. “Narrative Medicine as a Means of Training Medical Students Toward Residency Competencies.” Patient Education and Counseling Journal 91 (3): 280–286.

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Bride, Brian E., Margaret Robinson, Bonnie Yegidis, and Charles Figley. 2004. “Development and Validation of the Secondary Traumatic Stress Scale.” Research on Social Work Practice 14: 27–35. Brison, Susan. 2002. Aftermath: Violence and the Remaking of a Self. Princeton, NJ: Princeton University Press. Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Figley, Charles R. 1995. “Compassion Fatigue: Toward a New Understanding of the Costs of Caring.” In Secondary Traumatic Stress: Self-Care Issues for Clinicians, Researchers, and Educators, ed. B. Hudnall Stamm, 3–23. Lutherville, MD: Sidran Press. Frank, Arthur. 1993. At the Will of the Body: Reflections on Illness. Boston: Houghton Mifflin. ——. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. ——. 2004. The Renewal of Generosity: Illness, Medicine, and How to Live. Chicago: University of Chicago Press. Gunderman, Richard. 2014. “For the Young Doctor About to Burn Out.” Atlantic, February 21. http://www.theatlantic.com/health/archive/2014/02/ for-the-young-doctor-about-to-burn-out/284005. Herman, Judith. 1992. Trauma and Recovery: The Aftermath of Violence—from Domestic Abuse to Political Terror. New York: Basic Books. Irvine, Craig. 2009. “The Ethics of Self-Care.” In Faculty Health in Academic Medicine: Physicians, Scientists, and the Pressures of Success, ed. Thomas R. Cole, Thelma Jean Goodrich, and Ellen R. Gritz, 127–146. New York: Humana. Laub, Dori. 1992. “Bearing Witness, or the Vicissitudes of Listening.” In Testimony: Crises of Witnessing in Literature, Psychoanalysis, and History, ed. Shoshona Felman and Dori Laub, 57–74. New York: Routledge. MacCurdy, Marian M. 2000. “From Trauma Writing to Writing: A Theoretical Model for Practical Use.” In Writing and Healing: Toward an Informed Practice, ed. Charles M. Anderson and Marian M. MacCurdy, 158–200. Urbana, IL: National Council of Teachers of English. McCann, Lisa, and Laurie Anne Pearlman. 1999. “Vicarious Traumatization: A Framework for Understanding the Psychological Effects of Working with Victims.” In Essential Papers on Posttraumatic Stress Disorder, ed. M. Horowitz, 498–517. New York: New York University Press.

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Pearlman, Laurie Anne, and Karen W. Saakvitne. 1995. Trauma and the Therapist: Countertransference and Vicarious Traumatization in Psychotherapy with Incest Survivors. New York: Norton. Raine, Nancy V. 1998. After Silence: Rape and My Journey Back. New York: Three Rivers. Saakvitne, Karen W., and Laurie Anne Pearlman. 1996. Transforming the Pain: A Workbook on Vicarious Traumatization. New York: Norton. Salston, Mary Dale, and Charles Figley. 2003. “Secondary Traumatic Stress Effects of Working with Survivors of Criminal Victimization.” Journal of Traumatic Stress 16 (2): 167–174. Sinha, Pranay. 2014. “Why Do Doctors Commit Suicide?” New York Times, September 4. Stamm, Beth Hudnall. 2010. The Concise ProQOL Manual. 2nd ed. Pocatello, ID: ProQOL.org. Taylor, Charles. 1991. The Ethics of Authenticity. Cambridge, MA: Harvard University Press. van Dernoot Lipsky, Laura, with Connie Burk. 2009. Trauma Stewardship. San Francisco: Berrett-Koehler.

part

II

Narrative Social Work with Individuals and Families who appear in these chapters include hemophiliac patients in an outpatient hospital unit and their families; an adolescent girl in crisis; a middle-age man with schizophrenia; a woman and a man at the end of life; and two older adults, a man and a woman, diagnosed with clinical depression. Settings range from home to mental health clinic to hospital— with all manner of personal–professional interactions along the way. Millet Israeli explores the issue of “self-disclosure” in practice and in the professional literature. Sharing her musical background, she reconnects a schizophrenic client to areas of pleasure in his life. Sharing her experience as an attorney, she helps a dying lawyer dispense with anger long enough to recognize the sources of support still open to him. Constance Gemson alerts the reader to the need for people to maintain engagement with the world and all that has given them meaning—up to the very end of life. She brings familiar music into her mother-in-law’s hospital room, involving not only her own family but also those of other patients and, in the process, reconnecting their present and earlier selves. Jessica Greenbaum and her daughter Isabel Marcus recall a crisis in the life of their family. Their narratives come together at some points, veer off

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counci l on s oc i a l wor k e d u c at i on soc i a l wo rk c o m p e t e n c i e s

2. Engage Diversity and Difference in Practice The authors illustrate understanding of diversity as “the intersectionality of multiple factors.” Their work highlights the effect of a host of variables, including age, culture, color, disability, ethnicity, gender, class, culture, color, ethnicity, religion, and spirituality. 6. Engage with Individuals, Families, Groups, and Communities The chapters acknowledge barriers to engagement and the potential of narrative to facilitate it. The authors “apply knowledge of human behavior and the social environment, person-in-environment, and other multidisciplinary theoretical frameworks to engage with clients and constituencies.” The process involves understanding and responding to many obstacles—some within the authors themselves, some within those they are trying to help, and some within the service system. 7. Assess Individuals, Families, Groups, Organizations, and Communities The authors demonstrate an ability to “select appropriate intervention strategies based on critical assessment of strengths, needs, and challenges within clients and constituencies.”

in others—a prime example of intersubjectivity and the value of gathering multiple views of any situation. A shared image of a canoe illustrates the enduring family bond and its resonance through time. Judith Levi uses knowledge from her Orthodox Jewish upbringing to advantage in a hospital unit treating young hemophiliac patients. She becomes a translator—of language, of fears, of religious needs. Helping child, parents, and the team understand one another, she provides an example of service in a multicultural society. Lauren Taylor brings her training in oral history into a mental health clinic treating older adults. She writes of her work with two clients diagnosed with clinical depression. With the approval of her supervisor, she enriches the usual method of treatment with audio recording stories of their lives. A nontraditional treatment method fosters a profound reworking of prior life stories and a recognition of contributions the clients have made.

4

The Reluctant Storyteller THE USE OF SELF IN NARRATIVE SOCIAL WORK



mil l et i sr a e li

Man wishes to be confirmed in his being by man, and wishes to have a presence in the being of the other. . . . Secretly and bashfully he watches for a Yes which allows him to be and which can come to him only from one human person to another. m a r t i n b u b e r , “Distance and Relation”

w h o a m i and h ow d i d i g e t h e re ? i am a story seeker.

I’ve always been interested in people’s stories— the secrets they keep, the narratives they weave, the life they create in the telling. As a child, I read voraciously and wrote my own stories, imagining characters and crafting them into existence through my words. Through college and law school, I continued to write, and I also found ways to live others’ narratives through theater. Acting permitted me to enter an unfamiliar story, to explore foreign motivations and drives, to climb into someone else’s skin. I studied psychology at Princeton and focused on the nexus of law and health care at Harvard Law. While there, as a volunteer public defender, I distilled and reiterated people’s stories in court to protect their rights. Even as a corporate attorney, I was more drawn to the inner life of the people I worked with than to the terms and conditions of the contracts we negotiated. I was curious about the choices people made, the way they faced crises, how they handled frustration. I began to see people as a product of the stories they tell. Some true, some fairy tales, some forgotten, others very much not forgotten. Ultimately, I also turned this focus onto

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my own story. A careful exploration of my personal narrative allowed me to better understand why, after almost twenty years of practicing corporate law, I decided to leave behind a six-figure salary to begin a master’s in social work. Understanding my story, telling it, and writing about it allowed me to explore why I was drawn to working with patients facing the end of life in the first place. On some level, I knew that my interest in working with the dying stemmed from my own background. I have always been drawn to stories of loss, perhaps because loss is woven into the fabric of my own history. My paternal grandfather was an orphan at age eleven, having witnessed his father being shot by the Bolsheviks early in the Russian Revolution. My maternal grandfather immigrated to Palestine at seventeen, leaving his family in Poland. They all died in the Holocaust. My grandfathers’ grief created a legacy of loss, passed down from their generation to the next. In college, I studied the intergenerational transmission of trauma (Epstein 1988) among Holocaust survivors, their children, and their grandchildren. It was clear to me that my grandfather’s grief defined him. And his pain was transmitted, sometimes openly but more often indirectly, to my mother, and then to me. During my social work training, perhaps subconsciously triggered by my work with the critically ill and dying, I began to rigorously research the fate of my great-grandfather. Rumors had trickled back to my grandfather in Israel that his father had been shot in his hometown when the Nazis first occupied the region. My investigation lead me to the Auschwitz Web site, where a quick name search revealed that my great-grandfather had died there, well after the date he was believed to have been killed. Discovering this was surprisingly painful for me. Somehow I was pained that no one had known, or would ever really know, his story. His narrative, and that of so many victims, died with him. I think my work with people facing death is really about allowing people to tell their stories before it is too late, to somehow make up for the many stories that were buried in the war. Motivated by this purpose, in my social work practice, I was especially drawn to people who were not likely to share their narratives—the reluctant storytellers. I saw it as my function to help them find their voices or to help them recognize the benefits of storytelling.

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t h e p l i g h t o f th e re lu c tant s tory t e l l e r a n d t h e q u e s ti o n o f s e lf -d i s c lo sur e

Most patients come into therapy actively seeking relief or help. Reluctant storytellers are different. For various reasons, either because of their illness or their personal attitudes, they are resisting care. These cases are uniquely challenging and may require clinicians to be creative to make treatment possible. For example, I have found that in certain cases, deliberate, wellreasoned self-disclosure can help establish a therapeutic rapport with hardto-reach clients. Notwithstanding that over 90 percent of clinicians report using selfdisclosure as a therapeutic technique, the issue has long been surrounded by ambiguity and controversy (Gibson 2012; Henretty and Levitt 2010; Raines 1996). Psychoanalytic practitioners traditionally viewed it as a form of countertransference, or a reflection of the therapist’s unconscious feelings, and thus an obstacle to the therapeutic process because it focused not on the client but on a drive emanating from the clinician. With time, recognition of the humanity of the clinician and of the importance of the relationship between clinician and patient gradually led those in the humanistic school to accept and even encourage the use of self-disclosure (Farber 2006; Raines 1996). With the practice now so widespread, our focus should be on giving clinicians guidelines and frameworks for evaluating whether disclosure is therapeutically productive and ethical. Yet, as a student, I recall receiving mixed messages regarding when self-disclosure was appropriate. Generally, the rule of thumb we were taught was that it was only acceptable if it was somehow helpful to the client. But there was no clear definition of helpfulness. As I began to embrace humanism in my practice, I came to define “helpful” as anything that enhanced the depth, strength, and authenticity of the therapeutic relationship. To me, the value of the therapist–client bond lay within the intersubjective space these two individuals created together. For purposes of this discussion, when speaking of self-disclosure I am referring to deliberate, spoken self-disclosure of information about the clinician’s life outside the therapeutic encounter, as opposed to passive selfdisclosure that inevitably occurs within the therapeutic encounter, such as whether the clinician wears a wedding ring. Deliberate disclosure, particularly with respect to non-intimate demographic information, has been

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found to be useful in the very early phase of the therapeutic relationship as a means of building rapport or overcoming an impasse (Gibson 2012; Henretty and Levitt 2010). That being said, like many who write on the topic, I recognize that selfdisclosure should be used sparingly and within some delineated guidelines. Therapists should avoid making self-disclosures impulsively, without some deliberate thought process about whether the disclosure is necessary and ethically appropriate (Gibson 2012; Knight 2012). Absent this analysis, selfdisclosure may instead interfere with the therapeutic process or shift the focus of the therapy from the client to the clinician (Raines 1996). In an effort to apply a clear-cut framework to my own self-disclosure process, I created a set of guidelines based on some of those set out by Knox and Hill (2003). In my own practice, I endeavor to use self-disclosure judiciously and sparingly. I pay close attention to the nature of the selfdisclosure so as to ensure the content is appropriate to the context. My mental emphasis, ultimately, is always on what the client needs, and I ensure that my rationale—typically to enhance the therapeutic alliance or encourage client disclosure—is clear. Once the self-disclosure has served its purpose, I am quick to return the focus to the client. The following case histories are examples in which a calculated and limited personal disclosure allowed me to make a connection with the patient and to begin a therapeutic process that would not otherwise have been possible. s el f- di sc lo s u re le ad s to b re ak t hr o ugh i n t r e at m e nt o f a s c h i z o p h re ni c pat ie n t

My first meeting with “Dave” left me discouraged and skeptical of my usefulness. We sat together for an hour, during which I peppered him with questions, almost all of which he ignored. Dave, in his early fifties and diagnosed with schizophrenia, was actively psychotic and almost entirely internally preoccupied. He was notoriously unreliable and consistently noncompliant in his use of medication. Though his behavior patently indicated otherwise, Dave denied any delusional thinking and any hallucinations. He struggled to express himself, often showing blunted affect. From his overstuffed fi le, I knew that Dave was raised not far from where I grew up. I knew that he had excelled academically in high school but had failed out of college in his first semester as a result of his first psy-

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chotic break. I knew he had been a skilled musician who played multiple instruments. His records reflected little else about his past, other than his numerous hospitalizations and ongoing struggle to manage his psychosis. I was at a loss about how to handle Dave. I had been trained to meet the patient where he is, but that arguably meant sitting silently while Dave entertained his active hallucinations. I didn’t feel like I was helping, and I sensed that Dave had a story to tell, if only I could find a way to get him to open up. One day, as I again found Dave nonresponsive to my questions, staring blankly at the wall, as usual, I decided to take another approach. I chose to self-disclose. I told Dave that I grew up not far from him. “Oh, yeah?” Dave replied. His eyes met mine, and I knew at that moment that there was more to Dave than his lengthy medical record might imply. I responded simply, “Yeah.” That was all it took. Dave was suddenly a talker. That day, Dave and I talked about his childhood and high school years. I learned about his mother’s lengthy illness and death when he was a teen. He told me about the various extracurricular activities he participated in, about how he loved to play piano and guitar. He shared about his tense relationship with his father and brother. By simply telling Dave about my hometown, I had opened the door to his history. After this initial connection, Dave gradually became more talkative and responsive about his state of mind. With a simple disclosure and a lot of commitment, I was able to engage him more than any of his prior counselors and to learn more about his past. He became more open about his feelings and experiences and, notably, began to express an interest in my reactions to what he said and did. Dave had consistently denied suffering from hallucinations, and this was one area I struggled to tap into with him. One day, I brought Dave to the facility’s auditorium to show him the dusty, unused piano. Dave sat down, gazed offstage, and began to play. In that moment, I could see Dave transported back to his life before his illness descended upon him. He seemed calm, not haunted by demons. When we returned to my office afterwards, I shared that I had played piano as a child, albeit briefly, and that I wished I had kept up the habit. Dave smiled and said, “Yeah, I wish I had the chance to play more. You’re my favorite audience.” We sat quietly, Dave’s fingers moving as though still on the keyboard.

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Then Dave raised his hand as if to wave to someone. I had seen him do that before, but when I asked what his gestures were about, he said “Oh, nothing.” Over time, I had stopped bothering with the question. Feeling optimistic within the intimacy of the moment, I asked again. “Dave, who are you waving at?” I ventured. This time, Dave confessed. “Someone was over there,” he said. “Sometimes when we aren’t talking, I can talk to someone else, even fifty people at a time. I see them, too. Mostly they talk, and I listen.” His admission that he was experiencing hallucinations was a big step in our therapeutic relationship. I asked Dave what the people were saying. He replied, “Well, one of them was suggesting that I could move to Europe.” I asked, “Move to Europe? In your mind, or for real?” He replied, matter-of-factly, “Millet, there’s no difference between those two things.” I was amazed at how much insight he was able to have into his mental state and his experience of reality. The conversation turned to his own awareness of how broken his life had become. He picked up the guitar I kept in my office and began strumming an old Simon and Garfunkel song. “That’s my life,” he said, and then sang the refrain, “Slip slidin’ away . . .” Dave spoke for a long time about how he had struggled to get his life back together but was now resigned that it was just slipping away. He explained, “I don’t have anything anywhere near that sanity anymore. And I can’t see the light at the end of the tunnel.” Recently, I was riding the subway and I ran into Dave. I hadn’t seen him in years. Though it was spring, he was wearing a heavy overcoat and was mumbling to himself. Most of the passengers were eyeing him suspiciously. When he saw me, his eyes brightened. “Hi!” he exclaimed, “How are you?” Dave and I spoke until I reached my stop, and then I wished him the best and waved good-bye. The subway doors closed, and as the train pulled away, I watched Dave go back to mumbling and staring at the floor. Dave had a story to tell, but he did not have many willing listeners. I was proud to be his “favorite audience.” s el f- di sc lo s u re as a path to c o n n e c t io n w i t h a dy i ng pati e nt

My experience with Dave made me aware of how, for those reluctant to share, the pain of their situation threatened to become overwhelming.

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When I worked in hospital-based palliative care, these were the patients I most sought to help. One such patient was Mr. A. We were told he was a VIP but that he was “making trouble” for the staff. His doctors recommended a release to inpatient hospice or to home. His wife fell apart when the suggestion to move him back home was made. And the patient? He refused to leave. We entered the room somberly. Mr. A answered the doctor’s questions with the tone and enthusiasm of someone used to rote memorization. The truth was, the doctor had nothing to offer. The patient didn’t have any physical symptoms that needed palliation. Mr. A grumbled, “I should have these answers prerecorded. Same bullshit over and over. You wanna know about my ‘illness,’ my fucking death sentence, read it in my fucking chart.” A palliative care fellow looked imploringly at the nurse practitioner and me. The nurse practitioner and I exchanged a glance. She took the first stab talking about the dreaded subject: hospice. “I’m not going to the fucking Bronx to die.” That was Mr. A’s opener and closer on that topic. His wife stepped behind him, begging us with her eyes. The silence was deafening. The team seemed to have taken a full step away from Mr. A’s chair. Everyone seemed to hope someone else would speak. And I found myself standing awkwardly by his armrest. I bent down uncomfortably. Then I made a choice. An empty chair was an arm’s reach away, but I sat on the floor by his feet. I looked at Mr. A. He was handsome, still, though his thick brown hair was mussed. I could tell he was used to dominating a conversation. He reminded me of attorneys I had met during my twenty years in corporate law. Bright, ambitious, unyielding. “Okay, well, I think we all understand what you don’t want to do,” I said. He grunted acknowledgment, expecting we’d leave the room. My team sure looked ready. I continued. “I get the sense you’ve spent a lot of time talking about this. We’ve just met. Can you tell me a little bit more about who you were before all of this?” I knew, from reading his records, that four months earlier he had seemed at the peak of good health. He was summering in Nantucket, playing golf daily, enjoying his semiretirement. Then that stomach pain turned out not to be a virus. He was diagnosed with a stage 4 pancreatic cancer. What his

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records did not tell me was who he was five months earlier, and before that. Who was Mr. A the person, not Mr. A the patient? So I asked him. “Tell me about what life was like before all this.” He continued to look away. No answer. “What line of work were you in?” I tried. “Ask her,” he waved his hand in his wife’s direction. She began fi lling in the details—lawyer, businessman, executive, man about town. He grunted in details here and there. Silence settled in again. My mind churned. Do I tell him? Do I mention that I, too, am an experienced corporate attorney? My instincts told me Mr. A might be more likely to share his story if he knew of our common ground. “I used to work in corporate law, for many years. Still do, actually,” I chatted. Mr. A turned to face me, sizing me up from his seat. “Is that right? Where’d you go to law school?” He was scrutinizing me, probably in the same way he’d assess his adversaries across the conference room table. “Same as you,” I answered. He looked at me, paused for what seemed like a lifetime, took a deep breath, and began. For the next forty-five minutes, “Bill” (he now asked me to call him by his first name) and I talked about our shared alma mater, his career, lawyers we knew in common, the projects of which he was proudest. He was animated and engaged. Even his posture, slumped and hopeless when we arrived, had changed. He sat up as though he was dressed in one of his handmade suits, chatting over a business lunch. My team had excused themselves a few minutes into the conversation. Bill and I talked like colleagues, me sitting on the floor of his hospital room. I steered the conversation to his health, asked him how it felt to be this close to death. He ran his fingers through his hair. Sighed heavily. I noticed his wife looking over at us, seemingly bracing herself. “How would you feel?” he asked. “Do you see me here? I’m miserable, I’m in pain, I get no joy out of anything anymore. Everyone wants to send me off to die. What’s the point?” By now he was tearful. He swallowed a sob. “I would be miserable,” I shared. “Miserable and afraid.” He nodded. He took my hand, which by now was resting lightly on his arm. “I’m fucking terrified. I just want it to be over. Just let it end. How much longer do I have to suffer?” he implored. I said the only thing I could: “I don’t know. I don’t know.” Bill and I met a few times during his last two weeks of life. In the end, the hospital administrators agreed to let him stay. Sometimes we walked to

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the end of the hall. And when he couldn’t manage that anymore, I sat by his bed. He spoke more of his fear and how hard it was to comprehend the world without him in it. He told me about broken relationships from his past, how his pride had kept him from reconciling with his siblings, who were not aware of his illness. He shared his regrets and his pride, his sorrows and his joys. Soon, however, Bill slipped into a state of agitated delirium that made it virtually impossible to speak to him. He began stripping off his robe and hurling profanities. The doctors prescribed a sedative in addition to his morphine. Bill was actively dying. When I returned to the hospital after a long holiday weekend, I checked his fi le. Bill had died the night before. He was alone. I’d like to say that Bill’s sharing his narrative with me was the miracle cure that allowed him to accept his fate and die a peaceful death. But that was not the story. Bill was angry and scared. And, before me, no one had allowed him the space to express those feelings. His narrative until then was one of intellect and business prowess. The people around him were not ready for his vulnerability. Through a carefully chosen disclosure, I invited Bill into a dialogue, and he accepted the invitation eagerly. By presenting myself as a peer, I created an atmosphere of professional and intellectual common ground. After he died, I got a call from Bill’s wife. She asked to come see me. Over a cup of tea, Mrs. A shared some stories about Bill’s care at home before he was admitted to the hospital. “He fired some hospice caretaker everyday,” she confessed. Mrs. A had been overwhelmed and at a loss about what to do. She continued, “I recall one aide who left his room in tears and never came back. Poor thing, she asked him to share his ‘hopes and aspirations.’ Apparently, he guffawed and shook his head, answering, ‘My hopes and aspirations? Seriously? I guess I hope you don’t lose your job over this nonsense.’ ” Mrs. A laughed elegantly, sipped her tea, and went on. “I think he felt very, very alone at the end. He was no longer a human being. He was a patient, a reporter of symptoms, a dying man. But when you spoke to him that day, when you sat down on the floor beside him, someone finally reached out to Bill the person. He really needed that. I really needed that. So I thank you. And I know he would have thanked you, too, if he had the chance.” There wasn’t any magic to what I did that day in Bill’s room. No cuttingedge technique. My focus was on quickly laying the basis for a mutual

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interaction between us. I sat down at his feet like a child waiting to be read a story. I asked a simple question. I introduced myself as someone who might understand him. I created a common ground as a way of opening the door to the therapeutic encounter. And then, once he stepped through, I welcomed him as an empathetic listener and gave him permission to tell his story. At the end of my meeting with Mrs. A, I shared my written reflection about my interaction with her husband. I wanted her to better understand my reaction to his suffering. Tears ran down her cheeks as she read. “We were lucky you walked into his room that day,” she whispered. Bill’s story was never his story alone. It was her story, my story, the story of the doctors and nurses who cared for him. In sharing my piece of the story with her, I showed her that. Bill wasn’t just a patient. He was a human being facing other human beings. Our meeting wasn’t just an encounter. It was a mutual interaction, an authentic exchange. I believe I gave him a voice. I am a story seeker. I believe that no one, no matter how reluctant, should be denied the chance to share his or her story. This is what drives my work. references

Buber, Martin. 1999. “Distance and Relation.” In Martin Buber on Psychology and Psychotherapy: Essays, Letters, and Dialogue, ed. Judith Buber Agassi, 3–16. Syracuse, NY: Syracuse University Press. Epstein, Helen. 1988. Children of the Holocaust: Conversations with Sons and Daughters of Survivors. New York: Penguin. Farber, Barry A. 2006. Self-Disclosure in Psychotherapy. New York: Guilford. Gibson, Margaret F. 2012. “Opening Up: Therapist Self-Disclosure in Theory, Research, and Practice.” Clinical Social Work Journal 40: 287–296. Henretty, Jennifer R., and Heidi M. Levitt. 2010. “The Role of Therapist SelfDisclosure in Psychotherapy: A Qualitative Review.” Clinical Psychology Review 30 (2): 63–77. Knight, Carolyn. 2012. “Social Workers’ Attitudes Towards and Engagement in Self-Disclosure.” Clinical Social Work Journal 40: 297–306. Knox, Sarah, and Clara E. Hill. 2003. “Therapist Self-Disclosure: Research-Based Suggestions for Practitioners.” Journal of Clinical Psychology 59 (5): 529–539. Raines, James C. 1996. “Self-Disclosure in Clinical Social Work.” Clinical Social Work Journal 24 (4): 357–375.

5

Grace Notes SIN GIN G I N M ARION’S HOSP ITAL ROO M



c on s ta nc e h . g e m so n

Music is the shorthand of emotion. l e o to l s toy

ma r i on , m y m oth e r-i n-law

for less than a year. I married her son when she was ninety-five. She attended our small wedding, accompanied by her supportive home health aide, who provided consistent comfort and tenderness. At ninety-six, Marion was still teaching at an Ivy League graduate school. Her energy and commitment were legendary at the college and in her field. She was the author of many books. Marion organized lively Sunday salons at her apartment, which featured animated discussion and debate. She was the unique professor whom students remembered years after graduation. And she was the one who remembered students and their work as well. She was an icon at her university yet was known for her modesty, too. Her academic work was valued for her fresh, original thinking. Students and colleagues knew her as an effervescent yet serious academic, always alive to new ideas and insights. My husband and I knew her in a very different way. In her eighties, when she transitioned to life in a wheelchair, we knew her as the woman who gazed outside her broad apartment window, seeing graceful runners, hoping that she would walk again. She loved movement and dance. Being in a wheelchair was so hard for her. My husband and I knew the quiet Marion, when others knew only the public persona.

“ m a r i o n ” wa s m y m ot h e r - i n - l aw

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h er l i fe i n a h o s p i tal ro o m

Then, suddenly but not unexpectedly, at ninety-six she developed pneumonia. She was rushed to the hospital by ambulance. Her life changed and shifted; she was a patient. The hospital provided excellent care, but her new schedule was based on doctors’ orders, not on her needs and desires. Marion was used to being in charge of her spacious apartment or classroom, where she was welcomed as the expert and celebrated as an intellectual hero. Now her life was restricted and limited to a small, square hospital room shared with a stranger. She seemed depressed and isolated; she found the hospital foreign and upsetting. What could I do? I was trained as a social worker, experienced in working with the elderly, but this was different. I was a new family member, a relative stranger compared to the academic friends who had known Marion for years. My husband and I tried to think of a creative solution to help her. Reading the New York Times or watching TV was not an option in the hospital because the atmosphere was too distracting. Endless health care professionals entered and exited Marion’s room at unpredictable times. The medical team controlled the clock and scheduled the medical tests that she needed. She lacked basic freedoms she had relished most of her life. Marion requested a book of poetry by Elizabeth Bishop. I was glad to give her my copy, but it proved hard for Marion to focus on Bishop’s wonderful verse and the magic of life lived elsewhere. Finally, I thought of a viable alternative. Music! Music is a ritual of everyday life and the essence of how we celebrate and grieve. Music shapes our experience on birthdays, at weddings, and at funerals as well. I knew that Marion loved classical music, but I thought popular tunes might be more engaging during this difficult time of her life. Across the hall was another family, who played Louis Armstrong’s “What a Wonderful World.” The lyrics, describing interactions with familiar people and joys of ordinary events transformed by quiet appreciation, seemed to sooth my mother-in-law. A music therapist came to visit Marion and chose to play “Moon River.” This melancholy music seemed too slow, too passive, and did not engage her. The therapist’s visit was brief. Later, Marion shared her own musical interests with my husband and me. She said that she wanted to hear a song of social significance. My hus-

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band and I were puzzled by this unusual request, until we realized that she was referring to “Sing Me a Song of Social Significance,” from a Broadway show of the thirties called Pins and Needles. Unlike romantic shows of yearning, this musical was about front-page news, strikes, and breadlines. To Marion, these words reflected her core values. She was committed to helping those who had so much less. I tried but could not find the CD of this musical. I recruited Marion’s longtime friend, who visited regularly, and together we started to entertain Marion. We began with Leonard Bernstein’s “Maria,” and we sang, “Marion feels pretty, oh so pretty. . . .” Almost dancing and prancing in the narrow dimensions of a hospital room, we sang with much more zest than talent. Marion became animated. In her hoarse voice, she hummed along. We continued with our over-the-top version of West Side Story’s menacing Jets and expanded the songs with bold, crazy hand motions. Marion nodded her head in approval of this hospital-based amateur hour. Spirited folk songs worked. The repetitive and familiar choruses offered a melodic certainty in a time of worry, endless worry. I started an energetic version of “Marion’s Got the Whole World in Her Hands.” Her friend and I sang and clapped. Marion smiled. In her soft, rasping voice, she participated, too. This musical experience sparked my interest in music therapy. What education is needed? What are the academic requirements for a practitioner? h i s tory o f m u s i c th e rapy

Researching current literature on music therapy, I read about music used for healing in ancient China, Egypt, India, and Greece. Plato and Aristotle wrote on music’s influence on health and well-being. As early as 1903, Eva Augusta Vescelius founded the National Society of Music Therapeutics. Isa Maud Ilsen, in 1926, organized the National Association for Music in Hospitals. Harriet Ayer Seymour was another early leader in the field of music therapy and began the National Foundation of Music Therapy. These professional groups created journals, books, and courses on music therapy but did not formulate a clinical training program. Dr. Ira Altshuler played a unique role when he started the first musical therapy program for the mentally ill, at Detroit’s Eloise hospital, in 1938.

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Altshuler was trained as a psychiatrist and became one of the earliest music therapists, a leader in this field for three decades. In the United States, music therapy became more visible during World War II, when it was used to help traumatized war veterans. Not all patients responded in the same way. Some could be actively engaged in music; others remained passive during the listening process. Music therapy is not only a patient humming along with the therapist. It also can be an intense interplay. This expressive therapy provides solace for patients with serious or life-threatening illnesses. This form of care may be included in an individual’s treatment plan. Music may be particularly helpful to those with memory loss. Although they may not remember recent events, songs from childhood or earlier periods of life may be recalled. Academic curricula were established during this time. Michigan State was the first setting (1944). Other colleges followed promptly: the University of Kansas (1946), the College of the Pacific (1947), Chicago Musical College (1948), and Averno College (1948). Researching this information, I found that music in the hospital is not just a feel-good sing-along but a serious academic discipline. mus i c t h e rapy o rg ani z ati o ns

On June 2, 1950, the National Association for Music Therapy held its founding meeting. At this time, the organization established clinical training requirements. Research was emphasized. In 1971, the American Association for Music Therapy was begun. In 1998, these two organizations merged with the new name of American Musical Therapy Association, which today is recognized as the main music therapy organization in the United States. Now, academic programs offer both undergraduate and graduate study. Entry-level educational training focuses on practical application for specific patient categories. When an undergraduate student completes this academic field of study, he or she becomes eligible for national certification as a music therapist. Graduate study focuses on research and advanced knowledge of the field and equips graduates to engage in further research and teaching. t h e r ol e o f a m u s i c th e rap i s t

The role of a music therapist is based on the skillful use of music and on intense listening to the patient. Music elicits feeling and can offer relax-

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ation, relieving depression and anxiety. It may serve to alter mood or to provide a social context that prevents isolation and creates community. The patient’s physical, psychological, social, and spiritual realms may improve. Individual knowledge and awareness are key. The music therapist is aware of the ethnicity, history, background, and personal preferences of each person seen. Rather than the direct expression of feeling, music is a more subtle and indirect form of expression. More academic research needs to be done to document and validate this creative field and its influence on patient care. t h e mus ic and m e m o ry p ro g ram

In 2008, a new program, Music & Memory,1 was developed, using the power of current technology. The use of iPods for long-term-care residents started with this program. Each individual receives an iPod with music based on his or her musical choices. Interests in jazz, folk music, rock and roll, or show tunes are acknowledged. For all ages and backgrounds, music offers a meaningful activity. Rather than reliance on medications, familiar melodies offer comfort and connection. The executive director of Music & Memory, Dan Cohen, developed three ninety-minute webinars. The goal was to help residents with dementia and to provide easy access for staff members to use new media. In Cohen’s fi rst webinar, the focus is on the practical application of this program and how it can be replicated in long-term settings. It shows how personalized music helps those with dementia and offers ideas on how to organize a team and implement Music & Memory. The second webinar examines the use of a personalized playlist and the matching of specific music with an individual. The use of interns, family, and staff is shown in this process. The third webinar features the technical aspects and practical application, such as policy guidelines and marketing materials. mus i c fo r m ari o n

As I became more aware of music therapy, I sought to integrate its benefits— its power to comfort, soothe, engage, and energize Marion. I did not have training as a music therapist and was not familiar with specific methods in patient care. My approach was more intuitive. I knew music’s ability to help me celebrate life’s joy, and to acknowledge sadness and loss as well. Music

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provided a way for Marion to regain some sense of strength in this last chapter of her life. Marion’s hospital roommate seemed rather quiet. The woman’s family visited, but we hardly interacted with them. One day, I started a robust and rousing version of “If I Had a Hammer.” Other visitors joined in with all the exuberance and spirit we could muster. Then I suddenly realized we were singing loudly and I apologized to the roommate’s son. He dismissed our concerns and told me quietly, “My mother was joining in.” Marion was not my client. This hospital was not my field of practice. But I recalled my training as a social worker and its core value of recognizing the worth of each individual. I remembered the Council on Social Work Education’s ten core competencies of social work practice. I used empathy and other interpersonal skills as I continued to assess Marion’s strengths and limitations in the hospital. Even though she was physically frail, she was not passive but was actively engaged. At ninety-six, Marion still had a rich sense of herself as a determined and autonomous woman. The hospital room was a place for new interactions with my mother-inlaw, her health care team, and friends. I became aware of my role as a learner, learning not only that old, familiar songs were comforting but also that they affirmed Marion’s values, political choices, and commitment to social justice. Singing served as life review and legacy. I remember one very important conversation with Marion, when she was too tired to sing. She wanted quiet. When she and I were alone, she told me about her fear of dying. She was scared of “going up,” she said. I reminded her of her passion for her work, for her students, and of the profound influence she had on many generations. I held her hand and listened. Two days later, Marion was discharged from the hospital and received hospice care at home. I knew the curtain was going down on her long and significant life. She had lived a life of gumption and tenacity. I think about her often and remember her last days, wondering if, at the end, Marion still heard the music. n ot e

1

For more information on the Music & Memory program, see Michael Rossato-Bennett’s 2014 documentary Alive Inside (http://www.aliveinside.us/).

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One Family’s Experience of Falling Out of Health A MOT H E R REM EM B ERS; A DAUG HTER R E F L E CTS



jes s i c a g r e e nba u m a nd i sa b e l marcu s

I apologize for my record of minuets to those who cry from the depths. w i s ł a w a s z y m b o r s k a , “Under One Small Star”

Yo Sun / Don’t forget to make the little tips of the lake sparkle in the morning. i s a b e l m a r c u s , “Yo”

i n t r odu c ti o n jes s i ca gr e e n ba u m

just when things seemed to be going extremely well for her, my teenage daughter took to her bed. Obsessive-compulsive disorder (OCD) and intense anxiety struck her down—for what became years. As a writer, I take my problems to the page, and by year three I thought the form of personal essay—in which I could explore what was happening, with the goal of keeping myself upright—might offer insight and relief. But what moral orientation to our crisis would avoid sheer opportunism in using my daughter’s ordeal? I chose the attempt to parse what it meant to be falling, day after day, from a great height. What exactly were we falling from? If I could deconstruct the experience of our family’s bafflement and powerlessness into very small parts, perhaps I could manage the maelstrom. If I could describe my daughter’s particular hell, could I make meaning from that? Can heartbreak be mended through writing about it? I do think we look to our collaboration with art to accommodate us to sorrow. There’s one summer morning,

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something about seeing, from above, the woods in which we were lost, seeing the path we took, that helps us feel closer to coming out into the light. As Arthur Frank (1995, 24) says in The Wounded Storyteller, thinking with stories is an ethical act, “hearing different nuances of potential meaning as the story is told in different circumstances and at different ages.” These repetitions from varying perspectives are how we construct ethics between family members. Because she also wanted to be understood, my daughter agreed to the essay, vetted it, and gave me permission to send it out for publication. What follows here is an abridged version of the essay published in Southwest Review (Greenbaum 2012). s u dden parad i s e : anoth e r c o ns ide r at io n o f b e fo r e

If I had to pinpoint the moment when my family experienced our defining time-divide, I would say it happened the first morning that our older daughter (I will call her Ava), then thirteen and a brilliant student who lived to learn, quashed her radio alarm and stayed in bed. She had taken to bed for a few days over the summer, had been experiencing increasing difficulties concentrating, and she said, flat out, for the first time, that she wasn’t going to school. My husband and I literally tried to pick her up—as crazy as that sounds now. But that was before. Now, three years later—years in which my daughter had to leave her beloved school, took to bed for a year, was hospitalized twice, saw four psychopharmacologists, five cognitive behavioral therapists, one therapist with no expertise we could discern, four social workers, eight tutors, and a handful of test administrators—she has yet to be on her feet outside the hospital for more than ten days at a time and can still feel overwhelmed by having a shirt lying on her bedroom floor. (“Everything is such a mess.”) There is so much to explain. (“Everything is such a mess.”) Diagnoses dribbled in, after psychoneurological evaluations and many consultations. Testing showed that, true to her straight As at a top school, Ava’s brain was as impressive as Google’s corporate office. Well, mostly. One employee kept going missing: the one responsible for “executive functions”— prioritizing tasks, beginning them, editing, and ending. That higher-up, it seems, had left the building. Or, if you prefer old-timey images, picture a crackerjack fire brigade, water buckets flying hand over hand at lightning speed, but one teammate in the chain intermittently stops to wonder

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whether the buckets are really full enough. What have you got, then? Flames. And the rest of the squad overrun. I’ve got a drawer of these metaphors. Like many people who write poems, I approach most pain with a magnifying glass and the faith that I can make meaning from the close observation that might reveal clues and solutions. My impulse here is to parse my family’s experience into a stop-action of falling, a Blow-Up that might deconstruct the more melodramatic of my responses and translate the conversations, seemingly in another language, spoken by strangers, going on in my body on a daily basis. Then, when people greet me with the answered question Everything good?, I’ll know what not to say. Also, if I slow down the action, maybe I can discern a strawberry plant on the side of a cliff. You know, the proverbial one you hang on to. In hindsight we know that, before Ava stayed in bed that morning, our heroine endured seventh and eighth grades while trying to rein in a runaway mind, spending whole evenings on school assignments that should have taken a few hours. During those years, Ava worked with a tutor who pointed out some of the obsessive, overanalyzing extra steps in her work, yet our family’s weekends became rare and undependable because Ava was at her desk, worrying, mostly. Getting out of the house was either routine or impossible. It could devolve into an elaborate, serpentine process of performing hygiene and perfecting outfits. It became difficult for our family to extend or accept social invitations. Then ninth-grade schoolwork came along and blew the top off, and dysfunction that had been intermittent became established. Paper writing became unapproachable, even with a reduced course load and special help. Executive-function deficit hooked up with anxiety (in the form of obsessivecompulsive disorder) and led Ava further astray. I think of that pair now like Foulfellow and Gideon, the fox and the cat who lure Pinocchio to the misleadingly named Pleasure Island. Ava, a very real girl, believed her mind’s demands were leading her from chaos to the relief of order. But instead she was led into the stubbornness and terror of OCD. There’s much comprehensive writing by clinicians and patients (and some clinicians who are patients) about anxiety disorders. My attempt to describe OCD here will be simplified in service to Ava’s story. When people have obsessive thoughts and act compulsively in response, they are trying to control anxiety stemming from uncertainty. It works out, as you may have noticed, that the world is lousy with uncertainty. So are most days,

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hours, minutes. An OCD-inspired ritual of brushing one’s teeth for exactly ten minutes can stem from the anxiety of not knowing if one is brushing enough. Sticking to set time periods bundles the arbitrary into more acceptable units. (It could be any amount of time. But I will make it ten minutes.) OCD poses as the protective mediator between a doubt-sodden mind and the vast number of wrong choices it might make. So, although Ava could ace objective assignments like advanced math, to ace writing a paper she felt it had to reflect her identity perfectly. Therefore, the finished piece remained as elusive as the ivory-billed woodpecker. Ava’s analytical brain might consider nineteen theme choices for an essay assignment on Great Expectations. Unfortunately, the executive who adroitly gives the stamp of approval on theme choices is gone for the day. And the next day. In her stead, the top advisor, the one who has Ava’s ear like Iago had Othello’s, threatens untold disaster if Ava’s choice isn’t as meaningful as Shakespeare’s word choice. We became very familiar with what is called catastrophizing: obsessive thinking’s concern for the consequences of imperfect decisions. One definition of humanness—being relatively happy with one’s necessarily imperfect choices—was lost to Ava. She lost the freedom to have compassion for her own personhood. Ava had been compensating and flailing, spiraling downward exponentially, at warp speed. She had been breaking down tasks into ritualized parts, to make each action perfect or meaningful, and thus complicated them exponentially. Ever try numbering the motions of buttoning a button? When life veers off the quotidian course not worth writing about (because all happy families are alike), daily life can easily fall into the realm of heightened drama—which, classically, has been written about. Life begins to imitate myth. My husband, Ava’s father, pictured Ava’s plight as mirroring that of the sorcerer’s apprentice, who attempts to reduce his banal floor-washing chore by bringing a mop to life. Alas, his magic was amateur! Banality became drama! The mop went haywire, gathering buckets of water and spilling them at an unwanted rate, at which point the apprentice tries chopping it to pieces. Each piece comes alive and gathers more buckets of water to spill! On the day that Ava silenced her alarm and pulled the covers over her head, exhaustion prevented her from trying to mop a seemingly immeasurable spill. (“Everything is such a mess.”) To an outsider, though, it looked like a water glass got tipped.

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As per the earth entire, very few systems remain truly static, and a jiggle in one part eventually jangles things elsewhere. The climate warms two degrees and birds migrate one week later and bugs don’t get eaten and pollination gets screwy and, by God, Katie bar the door. Despite what most people might assume about a mental condition, it does not keep its original shape. Ava’s mental issues affect her life and then morph because her life has changed. So you can imagine that a previously vibrant, self-possessed, blossoming kid who is knocked out of orbit because her brain cannot process certain materials as quickly as it once had could easily—there in her bed, while her sister, parents, and peers progress through the year—become depressed. And her inability to do things she once did might affect her belief that she can do them again. And this depression, along with a corrupted self-image, might keep a person from beginning things at all. While Ava, my husband, and I were attempting a purchase on Ava’s diagnosis, my friend D, a brilliant novelist who herself had been in bed for three years as a teen, said that the diagnosis comes last; clinicians see which meds help and then they work backwards. We are still working in that direction. People who see Ava when she’s down are sometimes surprised to learn that there are intermittent days, and short strings of days, when she feels truly herself and could pass as . . . Ava. On those days, she attends town hall meetings about health care, executes an accomplished Japanese brushpainting, teaches the precalculus class in her school, choreographs a dance with her sister on a lake raft, hosts parties, attends poetry slams and rock concerts, ushers at them, dances at them, has a peripatetic evening with friends, or joins a pickup basketball game with younger, much better boys in our city neighborhood. When she can get to the volunteer job she has performed for three summers, she becomes the intuitive teaching assistant who has an auspicious connection with the disadvantaged early-schoolers she works and plays with. The program’s mission is to keep the kids’ reading and math scores from taking their traditional summer dive. And Ava would know about that. She went from reading J. R. R. Tolkien’s Lord of the Rings trilogy in first grade, and everything she could get her hands on after, to . . . well, very, very little. How I have received what has happened to my daughter is that she has been disappeared, largely, over three years. It has been like watching a piece of colored paper being slipped out from behind an ornate cutout image that it was meant to make visible. In trying to stop that process, I

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have often found bits of paper on my hands and worried about my role in her misadventure, and fretted for ways to gauge that possibility. I wanted to remain as beneficent as I had felt as her mother in the years before, making thousands of requisite mistakes but trying my best as often as I could. Could I be calmer about her plight if I was sure I played no part in it? Is considering any connection my own narcissism, and might that narcissism itself play a part? I will save my conclusions about the extent of my role—because I cannot measure it yet. I can only offer to other readers the question itself, the disposition toward it, our human leanings toward causality, our own wrangle with imperfection, our own campaign against the arbitrary. How does a parent maintain equanimity when the past seems to have lost all its weight to the present? Perhaps the most visible unit of measure of how we are falling is that we have gone from the unreliable weekends, when Ava first started having trouble, to falling off the grid of reliable expectations altogether. Our family has lost its ability to make plans, any plans, and the four of us live with the constant possibility and reality of Ava in bed, or on the couch, feeling incapable of moving. It is not an exaggeration to say that the happiest nonverbal noise in our house is the sound of Ava’s footfalls. Therefore, our family dynamic as we knew it for thirteen years—vacations, weekend adventures, even daily routines—is gone. Our past is not only passed, which has its own pathos; our past is made of parts that no longer are manufactured. It is the true “before” portion of our story. Another survey of parents (and here I have interviewed my friends, so I know) reveals that each carries a secret sense of familial Eden. My friend P, whom I consider one of the most deliberate and thoughtful parents I know, revealed that the normal (and necessary?) loss of her teenage daughter’s affections struck her so grievously that the discovery of photos from when they had been different people to each other were too painful to put on the wall. I get that. It might seem like a Wanted poster. Or “Have You Seen This Child?” But I don’t mean to sound a glib note, because there is nothing funny about losing them. For parents like me, every experience we miss with our child mirrors an experience she is missing as well, a far sadder fact. Ava hasn’t had the luxury of renouncing the family—she can’t get out of bed to leave us.

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I have wanted to be sure I hadn’t played a hand in her troubles, and I wanted to be sure I wasn’t fanning their flames with a wrongheaded, exhausted, resentful, or otherwise unhelpful response. The drive to do the most perfectly right, meaningful thing comes with that territory as well— because the stakes are high and the consequences unknown. My only hope for understanding where we have been, where we stand now, where we might go, resides in breaking down the changes to see the parts. With my whole heart, I know that Ava’s ordeal will not dictate the whole of her future. Life’s randomness may have visited her, but her soul’s irreducible power will deliver her. Who can wait, though? (There is still so much to explain—in a nice way. And for her to explain to me.) But right now I am in a canoe on a see-through lake. It is ninety degrees, a heron waft s by, fish shimmy below, the lake is rimmed by banks of blueberry bushes, and today, in late July, the ballooned berries taste like sunlight is still spinning around inside them. But Ava is not with me. Because although we shared this place every year of her life, the fact that she once loved it but cannot always function here generally keeps her away altogether. No one wants to fail in Eden, which for thirteen years was the lake, until next it was the hospital. In the canoe, I have fallen off another grid, the grid of one generation offering experiences to the next. Sharing the world with my firstborn often defined the beauty of the thing shared, or doubled it. I don’t even know if I cared about ripe blueberries before I had kids. Nature was okay; canoes were okay. I never made hamantaschen, either, until Ava was my baking buddy. I didn’t much care about the mythology of America until threeyear-old Ava asked me about that float in the Thanksgiving parade, the one with the saloon doors and the gals in cowboy boots. “Why, that’s the Wild Wild West!” I nearly yahooed. (What do Jews know about the Wild Wild West?) I never even went to the parade before. I certainly didn’t care about children until the midwife handed me Ava, and the baby looked at me from that old country she had traveled through, to come to me. That moment might have seemed “before.” But it is always right now. •

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My essay wanted to protect my daughter through a pseudonym. Nearly six years after the time of its writing, she wrote her own experience (Marcus 2015) and said we might use it for this chapter. In this abridged version of a

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college assignment to write a personal essay in which the present self reflects on a younger one, we are again offered, as Frank says, the story “told in different circumstances and at different ages” as a way to “think.” Her essay pivots around one definitively painful night early on, before we knew the name for what plagued her or how she would ever make her way out of it. What follows is a look at the terror in the woods, from the light in which she now stands, in her own name. n i g h t of th e e c li p s e i s abel ma r c u s

I am lying on the couch, my face inside a dark cave made by two of the big throw pillows leaning on each other. I like this cave. It is cool and soft and dark in here. There is no time, no school, no homework, no pain, nothing. I wish my whole body could fit into this nothing cave, but it is barely big enough to fit my face, and if my whole body was in here, then my chest with the tight, desperate motor would be in here, and my heavy stomach with everything I have to do tangled in one big mass would be in here too, and the cave would no longer be safe or calm or free. The problem with my face is that it is attached to my head, and my brain is inside my head, and my thoughts are inside my brain. So, even if I could detach myself from my chest and my stomach and just be a head in a nothing cave, Everything I Have to Do and Everything I Can’t Do, and all of the pain that comes with them, would still be in the cave with me. Here is the intersection of the sets of Everything I Have to Do and Everything I Can’t Do: I have to do my homework. But I can’t do my homework. It’s too complicated, too scary. So I’ll just stay in the cave and not do it. But I have to do it. It’s not going to go away if I don’t do it. It’s just going to pile up inside my stomach and my brain. Even if I just don’t do any homework for any classes, I’ll fail the classes and have to retake those classes and do the same homework assignments. And even if I somehow do my homework, there are so many other things I have to do and I can never finish all of them and there will always be some things that I have to do sitting in my stomach and fueling the little motor in my chest. So I have to do my homework. But I can’t do my homework.

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I don’t really remember what happened next, but I know I lay down on the couch when I got home from school and I was still lying there when my dad came home from work, sometime between eight and nine. I lay there with my face in between the pillows while my mom cooked dinner and my sister did homework at the table. I lay there while the two of them ate dinner across the room and my sister told my mom about her day at school. Eventually my dad came home and changed out of his work clothes, and my sister went upstairs to go to sleep. My dad must have eaten dinner as well, but I don’t actually remember him doing so. Sometime, maybe around ten, my mom came downstairs to try to get me to go to bed. I must have started telling her about Everything I Had to Do and Everything I Couldn’t Do, but I don’t remember saying any words. My memory switches back and forth between a first-person perspective, in which I am my thirteen-year-old self, and an omniscient perspective, where I am not myself but I am not my family across the room, either. I am some sort of voyeuristic specter, existing in between myself on the couch and my family at the table, seeing both of them, but not being, or being seen by, either. The next thing I remember is lying on the floor by the couch, facedown. At this point in the memory, I am watching myself, as opposed to being inside myself, but I don’t see my legs. I just see the back of my upper body and my arms, with my hands trying to hold onto the cool, flat floor, as if it could possibly offer some comfort. My parents are arranged on either side of me, sitting like apostles in a Byzantine painting, concerned guardian angels who have no idea what to do. I am facedown on the floor now, and I am screaming. I am trying to pull the concentrated mass in my stomach up and out of me, through my throat, and to use up all of the energy from the motor in my chest until it stops, but the pain is like a magician’s many-colored scarf. No matter how much of it I pull out of my throat, there is still some left inside me. My parents try to comfort me: they pat my back or my hand to calm me down, but when they touch me, I jerk away and scream louder. My parents have stopped trying to shush me or talk to me, because I am no longer human. I don’t respond to human words. They look at each other over my body and say, “What should we do?” and “I don’t know,” and I scream and scream because I am powerless and they are powerless. After each scream, I breathe in, to check if the pain is still there, and it is, so I scream again, trying to expel it, trying to

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scream loud enough so someone who can get rid of it, someone who can fi x me, can hear. My parents say, “The whole neighborhood can hear you” and “You have to stop” and “Belle, do you want the police to come?” And I scream more, because I do want someone to come, someone to help me, but I know the police can’t help. Eventually a neighbor calls the police, and they come with an ambulance. My parents try to pull me up, but I cling to the floor, until finally my dad picks me up and carries me, an ugly screaming corpse, down the hallway and downstairs to the front door. This is what I wanted—for my dad to pick me up like he used to, when a parent picking me up was enough to save me. But I am not just someone’s daughter; I am also someone’s sister. And mixed in with my panic and rage is love and concern and guilt for my sister, because just as much as I want to get rid of the pain, I want to protect her from it. I know she is upstairs in her bed. I know she is awake. I know she is scared. I haven’t lived in the realm of language for the past fifteen or twenty minutes, but I know I need words to save my sister, and I know that, just as much as I don’t want to exist right now, I want her to exist and I want her to be okay. So, in the gasp after a scream, I find the words: “Becki. Is Becki all right?” And my mom says that she went upstairs to check on Becki and she is okay and she will go upstairs again and sit with her. And my screams are not so loud now, because my dad is carrying me and because I am going to go in the ambulance to the hospital, and hospitals help people who are in pain, and because I don’t want to hurt or scare Becki anymore. As my dad carries me down the stoop, I feel the muscles in his arms shaking under my weight. My pain is not a child’s pain anymore; it is too heavy for him to carry on his own. He can no longer keep me safe. I am on the stretcher in the ambulance, and my dad sits next to me and holds my hand, and I let him hold it and I don’t jerk away, because he carried me. When we get to the hospital, they put the sedative in me and then nothing. When I wake up, a doctor asks me if I want to or have ever wanted to kill myself, and I say no, because I don’t, and I haven’t. I wanted the pain to go away, and I wanted my brain to turn off, but I did not want to die forever. This is both a commemoration and an exhalation of that night, the night Everything I Couldn’t Do eclipsed Everything I Had to Do. Every-

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thing I Couldn’t Do and Everything I Had to Do gradually morphed into Everything I Can Do and Everything I Want to Do, and eight years later, I am content. Not content in a temporary sense, and not exclusively content, but content in an overall quality-of-life sense. A few weeks ago, I went canoeing with my sister for the first time in years. I love canoeing. I love reaching my paddle forward and pulling it back toward me through the water. My paddle turns into an extension of my arm, or my arm into an extension of the paddle. Whichever one is the original, both are good, solid substances, lean and strong and tan. I also love the ripples. Born instantaneously, from almost nothing, perhaps a small drop of water or the light graze of a paddle, they run effortlessly across a substance from which they were just a moment ago indistinguishable, and which, in another moment, they will seamlessly rejoin. When we go canoeing, my sister and I alternate between contemplative discussion and singing. There is something about the rhythm of canoeing— the reach, pull, and glide—that lends itself to song and insight. Becki teaches me songs she has learned, and we sing them, and our melodies spread out from the canoe and dissipate into the expanse of lake and sky. Which is not to say they are lost—the melodies stay inside us, too, but they don’t take up any space. •

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Being granted the privilege of hearing an experience as intimate as the one in “Night of the Eclipse,” I remember how desperately I used to wish I might hear my daughter’s thoughts so I could address them and keep her company when she was ill—and how heartbreaking it was when I finally did. D. W. Winnicott’s (1965) resonant truth, “It is a joy to be hidden but disaster not to be found,” shows itself in my daughter’s description of the isolated self in excruciating pain, but, thankfully, her essay illustrates the reversal as well, as she worked her way toward wellness. As a clinician supporting parents of adult children with chronic mental health problems, I hope to provide the information needed at the most confounding moments—describing what emergency rooms and hospital programs are for, for instance. I also hope to create support groups in which the art of poetry—for its own sake—is offered. We all need access to our imaginations, along with our resources. Sometimes, when we feel like we are falling off the earth, we can ameliorate that sensation by grabbing the handle of

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the right resource—and leaving the proverbial strawberry plant to pick when things settle down.

references

Frank, Arthur. 1995. The Wounded Storyteller: Body, Illness, and Ethics. Chicago: University of Chicago Press. Greenbaum, Jessica. 2012. “Sudden Paradise: Another Consideration of Before.” Southwest Review 97 (1): 144–156. Marcus, Isabel. 2015. “Night of the Eclipse.” In Telling Our Stories, Sharing Our Lives: A Collection of Student Memoir Writing (Fall), 22–24. New York: Brooklyn College. Winnicott, Donald Woods. 1965. The Maturational Processes and the Facilitating Environment. New York: International Universities Press.

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Scheherazade THE SOCIAL WORKER AS INTERPRETER OF SOCIAL, CULTURAL, AN D FAMILIAL M ALAD IES



ju di th le v i

Scheherazade had perused the books, annals and legends of preceding Kings, and the stories, examples and instances of bygone men and things. . . . She had studied philosophy and the sciences, arts and accomplishments; and she was pleasant and polite, wise and witty, well read and well bred. s i r r i c h a r d f r a n c i s b u r t o n (trans.), The Book of the Thousand Nights and a Night

w h e n t h e r e g i o n a l h e m o p h i l i a c e n t e r at a New York City hospital received funding for a social worker to join its comprehensive care team, I was recruited. It proved to be the most challenging and exciting way to use all the resources and knowledge I had garnered throughout my lifetime of learning and experience. Since childhood, people and their narratives have fascinated me. I grew up in Brooklyn, the daughter of a rabbi, feeling imprisoned by religion and conventional morality. My library card became my passport to the world outside my Jewish and Italian neighborhood. Between the covers of books, I escaped to other lands, other cultures, and into a world rich with emotions. A voyeur, voyaging in dangerous waters, I simultaneously stayed safely ashore. Reading stories saved me as surely as telling stories saved my heroine Scheherazade, who so fascinated her husband, King Shahryar, with more than a thousand nights of tales, that he spared her life and the lives of all the virgins in his kingdom.

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Unsurprisingly, I majored in literature at college. Later, the good fortune of marrying an academic afforded me free courses in graduate school at Case Western Reserve University. John Donne, William Shakespeare, Henry James, D. H. Lawrence, Fyodor Dostoyevsky, and Leo Tolstoy expanded my geographic, cultural, and historical boundaries. My knowledge of the workings of the mind and moral choices deepened with book learning and participation in the academic and political community in Cleveland, Ohio. After ten years of juggling family responsibilities with classes at the university, I amassed enough credits to earn a master’s degree in literature. I then decided that, rather than pursue an academic career, I would use my talents in the real world. The 1960s were a time of innovation. Mental health figures such as family therapists Salvador Minuchin and Jay Haley had recently developed means of intervention in social ills that involved the use of a variety of resources to solve problems. I was intrigued by the refreshing, commonsense attitudes of these practitioners who used their own experiences to invent innovative solutions. They studied people not in a theoretical vacuum but as members of their families and communities. Problems considered in these larger contexts suggested viewing and using what was available in a family’s environment to help ferret out and repair nonfunctional behavior. Family therapy emerged as a necessary tool for achieving permanent change in human behavior. Ready to plunge into a program where I could combine theoretical knowledge with practical experience, I enrolled in the Mandel School of Applied Social Sciences at Case Western. The simple status of being a mature student, married with two children, helped me get a placement, during my first year, in a family service setting and, the next year, at a major teaching hospital. The variety of experiences there, enhanced by expert supervision, enabled me to tackle the challenges I encountered when we moved to New York City in 1970 and I joined a medical center’s social work department. First assigned to the prenatal and abortion clinic (New York State legalized abortion in 1970), I later worked with high school students and then with people in the psychiatric day center. By the time I joined the hemophilia team, I knew the many social and bureaucratic aspects of inpatient and outpatient care in the hospital. These experiences served me well in tackling what turned out to be the most complicated, exciting, and gratify-

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ing assignment of my social work career—working in a regional comprehensive hemophilia center. Dr. L, a noted hematologist, had managed to persuade Congress to fund comprehensive care centers for the treatment of hemophilia patients across our region. Hemophilia, a genetic bleeding disorder, affects all cultures, races, and ethnicities. Although its occurrence is low in hospital populations, hemophilia’s debilitating effects necessitate the attention of many medical specialists. In addition to the seriousness of traumatic injury, people with hemophilia can bleed spontaneously. Blood vessels break without warning, causing bleeding into joints. Untreated, the acid in the blood wears away healthy tissue, causing severe pain and permanent crippling. Hemophilia is inherited and passes from mothers to sons. It has been recognized as far back as ancient Egypt. The Talmud, as well as the writings of Maimonides and others, repeats the injunction not to circumcise the newborn male of a mother whose two previous infant sons have bled to death. Grigory Rasputin played a key role in the lead-up to the Russian Revolution by manipulating Tsarina Alexandra, who was desperate to believe that he could cure the painful bleeding episodes of her young son, Alexei. The “hemophilia gene”—the one that fails to produce certain proteins required for blood clotting—is sex-linked: females have two X chromosomes (XX); males have only one (XY). A woman who carries the hemophilia gene on one of her X chromosomes has a fi ft y-fi ft y chance of transmitting the malfunctioning X to her children. If the affected X gene is joined by a Y, the outcome is a son with hemophilia. A girl who inherits her mother’s hemophilia-carrying X chromosome is protected from the disease and excessive bleeding by the father’s normal X. She will, however, be a “carrier,” having a fift y-fift y chance of passing her hemophilia X to her offspring. The hemophilia clinic headed by Dr. L employed an orthopedist, a physical therapist, a dentist, a psychiatrist, a nurse clinician, and a social worker. Together, the team oversaw the care of about three hundred patients. Some patients came for primary care, others came periodically for secondary care (twice-a-year assessment), and some traveled from abroad for tertiary care (consultation and treatment). The nurse and social worker served as primary gatekeepers, coordinating services among team members, patients, family members, and the community. At weekly staff meetings, the entire team discussed patient treatment

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plans. Rather than dividing into separate fiefdoms of expertise, team members pooled information. This afforded a better understanding of needs and problems and improved chances for optimum care. The social worker discovered the importance of understanding medical implications; the nurse found herself echoing the social worker’s attempts to get patient and family to understand and comply with the prescribed instructions. When I was hired as the team social worker, Dr. L instructed me simply, “See that the kids get to live a normal life. Keep the parents off their backs. Stop them from overprotecting their young sons.” When he said “parents,” I understood that he meant “mothers.” In addition to helping families cope with the complicated medical treatment necessary, many emotional issues needed to be addressed. Families required help not only in understanding and adjusting to having a child with a lifelong genetic disorder but also in addressing numerous concerns that emerged. Mothers felt guilty for having contributed the gene that causes the disorder, with its inherent danger and pain for her child. Fathers blamed themselves, or were blamed by others, for not choosing a perfect wife. The dynamics of the whole family changes when one member has special needs. Professionals have a responsibility to provide ample opportunities for these families to address problems and concerns. Prior to 1960, treatments required lengthy infusions of blood and long stays in the hospital. It wasn’t until the mid-1960s that a breakthrough in medical research demonstrated that blood could be pooled from a large collection of donors and processed in such a way as to isolate and freeze-dry the clotting factor. The concentrate could be stored in individual doses, then defrosted and infused when needed to stop a “bleed.” Further techniques and refinements eventually made it possible for adult patients and parents of young boys to learn to treat a bleeding incident at home. This reduced the need for traveling to an emergency room, with the inconvenience and cost of transportation that entailed, but even more importantly, a home infusion provided a timely response that reduced the amount of damage to surrounding tissues. The hospital team worked hard to understand the disease and to help patients participate as fully as possible in managing their own care. Because of the variety of patient skills, languages, and economic circumstances, there were many opportunities for unique solutions. The social worker in a medical setting typically connects patient, family, staff, and institution.

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She or he serves as guide through labyrinths of bureaucracy, as interpreter of medical jargon, and as cultural diplomat shuttling between communities and care centers. In other words, the social worker is Scheherazade, providing essential narratives to extend and enhance the lives of many. In the multicultural setting of an urban hospital, there were many opportunities for the social worker to play Scheherazade. Working with my very first case, I felt that I could draw on my literary studies and cultural upbringing in an effort to save a family. o p en s e s am e

Mrs. S’s pediatrician referred her to our center when her month-old baby’s circumcision site continued to bleed long after it should have healed. Mrs. S was a fragile-looking woman in modest garb, her head covered in the tradition of the Eastern European Hasidic sect. Young and frightened, she was still eager to understand what was wrong with her firstborn son, whose twin sister was thriving. Tests confirmed that he was a hemophiliac with a severe deficiency of factor VIII, a necessary component for effecting normal clotting time. So began our involvement with the boy and the family, which lasted for the rest of his life. During the first meeting, I was struck by Mrs. S’s intelligence and pluck. One of several daughters, she grew up in a cloistered religious community, devout followers of the rebbe, their leader, who had helped them escape the Holocaust in their small town in Eastern Europe. Born poor and raised motherless in Brooklyn, she was matched by her father in an arranged marriage with a young man raised in Israel and brought to New York by his mother to seek a wife. The very first question Mrs. S asked me was whether her young son would be able to find a wife. In the closed community in which Mrs. S lived, every family’s background is known and vetted. She was realistically concerned not only for her baby son’s future but also for his twin sister’s marriage prospects. Even though the girl might not be a carrier, a genetic illness in a family affects the future of all the offspring and their acceptance or rejection in the close-knit community governed by traditions of nineteenthcentury Eastern Europe. In order to help these families, it was essential to understand the concerns they carried over the ocean to Williamsburg, Brooklyn.

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My background, as the daughter of an Orthodox rabbi, served me well in explaining the Hasidic community to the medical staff. My knowledge of Yiddish and Hebrew also proved crucial when the hematologist met with the parents to discuss their son’s diagnosis and treatment. The mother spoke English and Yiddish; the father Yiddish and Hebrew; the pediatrician Hebrew and English. I translated among the three, attempting to clarify and ensure understanding. At this meeting, I was also able to observe how shy and withdrawn the father was. His wife had described him in terms that became clearer when we met. She said he was involved more in his Talmudic studies than with people. He was strikingly tall and handsome, and his deep brown eyes had a far-off gaze. Wrapped in his own world, he couldn’t make eye contact even with the male doctor. Fortunately, his mother had selected for him a wife who would be his emissary to the outside world. Mrs. S assumed the responsibilities of caring for a child with serious medical problems with capability, determination, and loyalty. I remained a go-between, helping to negotiate the perilous path between their community and the world of the hospital. There were problems with the Sabbath, when travel is forbidden to observant Jews. The dangers of delaying treatment, and the need to come to the emergency room immediately, though understood by the mother, had to be addressed. Ways had to be found to ensure that the child would be brought for medical attention. The problems were not only how to find transportation on the Sabbath but also how to get the boy home if the bleeding episode occurred on a Friday and he couldn’t be discharged from the hospital until after sundown. My understanding of Talmudic law enabled me to quote the injunction that saving a life trumps Sabbath laws, but the question remained: Who would bring the child? After much discussion, the parents asked a family member, who could obtain a special dispensation for his breach of the Sabbath and not arouse the suspicions of the closed community, to aid in emergencies. The severity of this particular boy’s hemophilia necessitated many visits to the emergency room. His mother calmed and held him motionless as the nurse probed for a minuscule vein in which to start a blood infusion. By three years of age, he was a model patient. One day, returning home with his mother by car service, he fell against a faulty door, which opened suddenly, spilling him onto a busy highway. His mother later described her shock at looking back, seeing the stunned look on her child’s face as he got

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to his feet in the middle of a busy thoroughfare and waited for rescue. The infusion he had just received protected him against bleeding. He was miraculously unscathed. By the time the boy was five, he had become a favorite of the pediatric nurses. This presented a problem. The little boy was very sociable and would run to women in their community to hug and be hugged in return. “This is not acceptable,” his mother complained. “Please tell the nurses not to spoil him.” As time went on, the whole team learned more about the complexities of dealing with the genetic nature of hemophilia in this closed Hasidic community. When Mrs. S reported that her younger sister had given birth to a boy, we were unable to persuade her to tell her sister that her baby, too, might be affected by the illness. She insisted that only in the event of complications after the circumcision would she disclose that she was a carrier and that her sister also might be a carrier of the defective gene. In the end, the sister gave birth to a healthy boy and Mrs. S kept her secret. Birth control was also an issue. We met with the heads of the Orthodox community to discuss the situation but were unable to get the dispensation we sought. After several subsequent births in the S family, including two more baby boys who bled after circumcision and were diagnosed with hemophilia, Mrs. S decided to have her tubes tied. Without confiding in her husband or anyone else in the community, she sought the help of the social worker and nurse to make arrangements for the ligation. Now the mother of five children, including three sons coping with hemophilia, she knew she had reached the limit of her ability to deal with the needs of the living. Her pleasure at celebrating her eldest son’s bar mitzvah, his welcome into the community, at listening to him recite prayers and repeat stories from the Torah— as old as those of Scheherazade—gratified the entire hemophilia team. a log to te ll th e s to ry

The stories that Scheherazade told would not have lasted as long or traveled as far if someone had not written down A Thousand and One Nights. Understanding the power of stories and their possibility for extending life must have played a part in my collaboration with the clinic nurse in devising patient logs. As mentioned previously, the discovery that clotting factors could be extracted from blood plasma, freeze-dried, stored, and reconstituted

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when needed for an infusion allowed patients to avoid delays in traveling to a hospital and awaiting medical treatment. By the 1960s, they could be treated at home. The hemophilia clinic nurse instructed adult patients in the treatment of bleeding episodes and asked them to record in a home care log the date and time of bleed, the site, the amount of blood product infused, and any reactions to treatment. Reviewing the log and discussing the measures they had taken during the bleeding episode gave them confidence and reassured staff that patients were properly assessing the severity of each bleed and administering the correct amount of clotting factor. Because there were episodes of spontaneous bleeding, without apparent trauma, I suggested that two columns be added to the log: one column in which to note circumstances at the time of the bleed (such as an exam, a party, or a quarrel with friends or family) and the other to record the patient’s emotional state just prior to the incident (such as feeling angry, tense, calm, excited, or depressed). This additional information provided a jumping-off point to explore problems or situations that patients wanted to address. Patients, families, and professionals became increasingly convinced of the role emotions played in physical manifestations of the disease. As a result, we began to anticipate, for instance, the larger-than-usual number of clinic visits the day after Thanksgiving. Staff advised patients who were about to get married to infuse themselves prior to the wedding ceremony. Patients became skilled in recognizing the onset of a bleed and, realizing that denial and delayed treatment could cause harmful and permanent damage, acted quickly to infuse. Patients reported feeling empowered by taking active roles in their own care. In one instance, in tandem with the nurse, I worked with three teenagers to teach them how to evaluate symptoms, measure dosage, inject themselves with the product, and keep an accurate log. The boys formed a close-knit group. They helped one another with the arithmetical computations related to their treatment. Once they had mastered the calculations and infusion techniques, they taught their mothers. This approach became an essential part of our protocol because, in order to allow blood products at home, there had to be one adult who was able to treat a bleed. When one mother–son dyad squabbled over who should chart the son’s bleed, I suggested that each keep a log. This helped them appreciate different points of view and develop mutual respect. The mother acknowledged her son’s growing responsibility; the youngster gained a sense of indepen-

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dence and, as my medical director had hoped, was able to lead a more fully normal life.

n a r r at i v e m e d i c i ne and paralle l c ha rts

In the early 1980s, I began asking patients with hemophilia and their families to keep parallel charts of bleeding incidents (see Levi 1981). Since then, many health care providers who seek to understand and help those who wish to stop smoking, lose weight, or control blood glucose levels routinely ask patients to keep logs to record feelings and behaviors. One of the most innovative uses of logs was developed in the early 1990s, when Rita Charon, an internist and preceptor at New York–Presbyterian Hospital, invented a teaching tool for medical students. In her book Narrative Medicine: Honoring the Stories of Illness, Charon (2006, 155) writes, Years ago, I found myself unhappy that my students did not have a routine method with which to consider their patients’ experiences of illness or to examine what they themselves undergo in caring for patients. We were very effectively teaching students about biological disease processes, and we were systematically training them to do lumbar punctures and to present cases at attending rounds, but we were not being conscientious in helping them to develop their interior lives as doctors. Nor were we modeling methods of recognizing what patients and families go through at the hands of illness and, indeed, at our own hands in the hospital.

Charon asked medical students to keep parallel charts “in ordinary language.” This is what she told them: Every day, you write in the hospital chart about each of your patients. You know exactly what to write there and the form in which to write it. You write about your patient’s current complaints, the results of the physical exam, laboratory findings, opinions of consultants, and the plan. If your patient dying of prostate cancer reminds you of your grandfather, who died of that disease last summer, and every time you go into the patient’s room, you weep for your grandfather, you cannot write that in the hospital chart. We will not let you. And yet it has to be written somewhere. You write it in the Parallel Chart. (156)

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A pioneer in the emerging field of narrative medicine, Charon continues to help not only students but also health care professionals to see that illness unfolds in stories. To better hear those stories, she proposes close reading of literature that extends the power of observation and enhances understanding of human motivation and behavior. Listening fosters the ability to see patients not only as subjects suffering ailments in the kingdom of the ill but also as people living in families, learning and working in the world. comp l i cati o ns

The role of the social worker became more complicated in the years after Dr. L gave me the injunction to “See that the kids get to live a normal life.” In the early 1980s, human blood and its derivatives were discovered to be transmitting potentially deadly blood-borne illnesses. The most feared was the HIV virus leading to AIDS. Regular support groups were set up for parents and staff to share concerns and seek solutions. Participants offered singular narratives of survival, which the team collected into its own log. Most memorable was the story of a father of a hemophiliac. His son complained of having to prepare for his bar mitzvah. The father recalled his own experience. He and his family had been in a concentration camp. The morning that he woke and realized it was his thirteenth birthday, he announced the fact to men in his barrack. Each smiled and gave him a little piece of their bread ration. Six months later, he was still alive, scared, hungry, and cold. He noted that the population of men around him had changed, and he murmured, “Today I am thirteen . . .” Once again, each man broke off a little piece of his bread as a bar mitzvah gift. He repeated this ruse whenever he needed, and he survived another morning to tell the tale. One of the saddest cases caused by the early ravages of hemophilia was that of a man whose bleeding episodes had kept him out of school in his poor, black neighborhood. By the time he became our patient at the hemophilia center, he was severely incapacitated, his limbs torqued and twisted into odd, uncomfortable angles by frequent bleeds into his joints. A quiet presence and warm smile belied the fact that he had been arrested a number of times for minor offenses, mostly involving bad choices in the company he kept, as he told me. Having been sentenced for the third time, he was escorted to the clinic by a prison guard. He said he had been caught

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driving a getaway car the wrong way down a one-way street, and he was resigned to another incarceration. I asked him how he would spend his time in prison. What would he read? With a great deal of embarrassment, he shyly confessed that he did not know how to read. When I suggested that now would be a perfect time for him to use his prison stay to achieve something that he thought impossible, his face lit up. I awaited his progress reports each time he came for his medical checkup. He reported with pride that his newfound ability to read made his prison time go more quickly as he entered into the thousand and one worlds of stories. The story of hemophilia in the 1980s and 1990s, alas, did not have a fairy-tale ending like the story of Scheherazade. The clotting product that prolonged the lives of the man who learned to read in prison, of the boys who wrote the stories of their disease alongside their mothers, of the son of the Hasidic Mrs. S, was composed of contributions from thousands of anonymous donors. A single donor whose blood contained HIV could contaminate an entire batch. During the frightening and secretive early years of the AIDS epidemic, screening for HIV among blood donors was unknown. All these young men who were dependent on anonymously donated blood, our hemophilia patients, were dead by the late 1980s. The courage of patients and families, combined with optimism and medical research, has inspired social workers, as translators and storytellers, to continue to listen to and believe in the stories of individuals and families searching for health and dignity. And, thanks to continuing research, scientists have now succeeded in manufacturing products considered to be free of the deadly viruses. Once again, hemophilia is known as a genetic disease to be treated and a chronic illness to be dealt with by knowledgeable professionals, who work to help patients and families live as normally and healthily as possible. references

Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Levi, Judith R. 1981. “The Log as a Tool for Research and Therapy.” Social Work 26 (4): 333.

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Sharing a Narrative Meal THE THERAPEUTIC USE OF NARRATIVE WITH OLDER ADULTS



l au r en tay lo r

Stories can cry out: these things happen; I embody what happened. a r t h u r f r a n k , Letting Stories Breathe

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involves role changes, which need to be meaningfully incorporated into an individual’s life story. Such changes, occurring within both personal and cultural contexts, may challenge that individual’s emotional narrative and sense of identity. Narrative therapy can be effective in assisting clients to discover meaning in their lives. This chapter will examine the co-construction of life-affirming narratives by a therapist “bilingual” in geriatric social work and oral history, working with two of her older clients. In one case, an intervention introduced the unique experience of recording a client’s life story and was an integral part of her treatment; in another, it was through writing and song that a client told his story and found new meaning. The intersubjective relationship between the narrator and the listener, and the intersection of public and private themes, also will be explored. Kropf and Tandy (1998) propose that self-narratives of older adults are formed around two types of changes: those that affect individual functioning and those that are based on socially constructed expectations of how an older person should behave. These changes often arise from experiences of loss, decline, and increasing dependency, and they signal turning points, which can derail an older person’s meaning system and sense of self. Polkthe process of aging

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inghorne (1991) refers to this as an “assault on self-identity.” The work of the therapist is to help the client integrate these turning points into the life story as part of a coherent narrative and to co-construct an alternative narrative based on resilience rather than on devaluation. Co-construction is a dynamic and interactive process. Nelson (2008) calls it a “co-production.” Narrative, with its capacity for meaning making, brings significance to the experience of both the narrator and the listener.

p r e pa r i n g th e narrati ve m e al

Much of the clinical work I have done in my chosen field of gerontology involves listening to life stories. Many of my clients, both in my clinical work and in my work as oral historian, are survivors of collective and/or personal trauma. In whatever “language,” this work is about bearing witness to story, and witnessing is arguably the most profound aspect of the work. Daphne Merkin’s (2014) phrase “the anxiety of insignificance” captures the essence of the unheard voice. Through the co-construction of narrative, that unheard voice is made audible. My experience as a therapist has been invaluable in my work as an oral historian—in engaging people in the interviewing process, in timing and sequencing interviews, and in maintaining my strength for listening to challenging material. Over the course of my career, I have heard hundreds of life stories. These were sometimes stories of suffering and despair, sometimes stories of joy and happiness, but always stories of survival and resilience. There is a growing body of evidence-based literature illustrating the therapeutic value of life review for older adults. Kenyon, Clark, and de Vries (2001, xi) have written: Narrative gerontology provides a lens through which to see the storied nature of aging. It offers a perspective that brings together diverse forms of research and practice that have the common aim of focusing on aging from the inside; aging as it is experienced and expressed in the stories of older persons. From the point of view of narrative gerontology, human beings are always constructing stories that reflect an intersection of genetic predispositions, past experience (intrapersonal, interpersonal, and sociocultural), and personal choice. We age biographically as much as we age biologically, psychologically, and socially.

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Listening to a client in a therapy session is altogether different from interviewing a client to construct an oral history. In my earliest oral history interviews, it was with some difficulty that I maintained this new frame, and with some effort that I refrained from therapeutic perspective and response. When clients are in therapy, their stories, recounted in forty-fiveminute weekly meetings, will tend to be fragmented and discontinuous, interrupted, too, by reframing, interpretation, and other examinations of psychological import, not to mention phone calls in pursuit of concrete services and the need to attend to paperwork. Therapy draws much from the nonverbal: what is not said, silence, body language. When Mrs. W, a woman in her eighties who has had a life full of tragedy, tells me with a big smile on her face that her husband abused her, I can ask her what is behind the mask. When Mr. R clenches his fists while talking about how his father constantly criticized him, I can help him express his anger. And there is always the possibility of asking the classic therapy question: “How does that make you feel?” The oral history interview is a continuous narrative, recounted more or less chronologically over a longer period of time. It is equally a dialogue and a co-construction, but the framework is different and, although it may have a therapeutic effect, it is not the same as therapy. As an oral historian, I might ask for clarification, but it would not be in order to probe the deeper psychological underpinnings of the narrative. Our examination of narrative in oral history sessions will hopefully enhance coherence and continuity, whereas in clinical work, narrative can yield layers of meaning and implication and enrich our opportunity to develop and refine insights, leading to fulfillment of therapeutic goals. Th is dialogic process draws on a multitude of questions and connections, admixtures and reiterations, almost like preparing a meal, as the combined ingredients form the outcome. Although I never presumed interviews to be clinical work, I wondered about using some of the elements so basic to psychotherapy, such as mirroring and paraphrasing. When an interviewee talks about experiences of loss or trauma, do I just sit by and politely listen? Although the role of an oral historian is not to help the interviewee interpret and process the narrative, expressing compassion is never out of place. Regardless of the discipline, the human connection is the most important element. Oral history and psychotherapy share a core organizer. How does the oral historian know when he or she is slipping into therapy? By the same

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token, how do clinicians recognize when a client’s construction of a narrative may be a diversion from therapeutic dialogue (what is termed “resistance,” in traditional therapeutic models)? Intersubjectivity shapes the outcome in both disciplines. Walker (2004, 19) describes this process as “empathic attunement to emergent experience and openness to movement through mutual influence.” I call it sharing a “narrative meal.” a men u o f narrati ve o p ti o ns

Interestingly, the emergent recognition of intersubjectivity in oral history parallels a similar phenomenon in psychotherapy. Jean Baker Miller, a psychiatrist and founder of the Stone Center for Developmental Services and Studies, developed the reciprocal relational–cultural model in response to traditional unidirectional models of therapeutic authority. The goal of the relational–cultural model is to foster mutually growth-enhancing relationships in which both parties feel they have an important role. Miller et al. (2004) emphasize that isolation is one of the most damaging human experiences and that the therapist must foster connection with the client, even at the expense of the therapist’s own neutrality. The authors refer to this as “therapist authenticity.” Miller’s coauthor Judith Jordan makes a distinction between relational responsiveness and reactivity, an important caveat when practicing narrative therapy: “Reactivity is impulsive, entirely spontaneous, and based only on the internal experience of one person. . . . Relational response involves a consideration of context and concern about the possible impact of our actions and words on the other person and the relationship”(68). The opportunity to record clients’ life stories adds another dimension to the therapeutic use of narrative, but it is only one of a range of options and must be used with great care. Clinical attunement is needed to determine when it is appropriate to record and when it is not, and agency policy and terms of insurance reimbursement may dictate the decision. The therapist must be sure that the client is not agreeing to the recording in order to please or comply with the therapist’s request, and that the recording is not diverting attention from an important clinical issue. As Linda Shopes (2002, 5) has written: “Although narrators speak for themselves, what they have to say does not.” She goes on to describe the way in which narrative’s “very concreteness, its very immediacy, seduces us into taking it literally.”

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In a clinical setting, this “seduction” by the story may mask important information for the treatment, so care must be taken to listen for underlying themes. Older people often see emotional problems as a sign of weakness, and even physical illness may go underreported, while another story is being told. Recording in a clinical setting must always be done in service of the client’s treatment. Clients come to us because they are stuck in a story—often a story of powerlessness, anger, or despair. Ambivalence is intrinsic to human existence and, although clients express the wish to change, they may cling to a problem, or even to a diagnosis, in an attempt to explain or justify a chaotic story. Frank (1998) has noted that we prefer the “hero” story and the “restitution” story, where an individual emerges from a difficult situation stronger in character, over the chaos story. We have difficulty listening to the chaos story, yet the narratives of many of our clients are, indeed, chaos stories. A client may allow “the problem” to become one of the principal players in the story, which can either lock the client into a battle with the problem or move the client to become the problem. Because clients often are focused on the problem, or may be working hard to avoid it, part of my work as a therapist is to help clients create new stories, by encouraging them to develop a working relationship with the problem. I ask the question “What would you be talking about if you weren’t talking about your depression/drinking problem/mental illness/you fill in the blank?” This almost always elicits a response that leads to a different kind of narrative. Clients often will answer with, “Hmm. That’s an interesting question. No one has asked me that before. I’m not sure how to answer, but I guess I could tell you about . . .” And then the story comes out. i t ’s ma rv e lo u s !

For the past two decades, I have worked as a psychiatric social worker in a freestanding not-for-profit mental health clinic for older adults. The mission of the clinic is to enhance the quality of life of older adults by fostering independent living through the delivery of comprehensive mental health and supportive services. With the exception of medication management, which is the domain of the agency’s psychiatrist and nurse practitioner, therapy is provided by licensed clinical social workers and is centered primarily on a strengths-based, client-centered approach. As a member of

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the social work staff, I have the opportunity to treat people both in the clinic and, in cases where they are either physically or psychologically homebound, in their own homes. Although oral history is not part of the mission of the agency, narrative plays a central role in the treatment. Several years ago, I began working with an elderly African-American woman who had been referred for psychotherapy by the Visiting Nurse Service because of depression reactive to her declining physical health. Her name was Marvlous.1 Marvlous had led a challenging and productive life, but spinal stenosis had left her unable to walk. When I first began working with her, we discussed her physical problems and her depression. However, as I do with all my clients, I also wanted to know something of her life history. As her story unfolded, I realized that, at almost ninety-five, she was a living historical archive. Several months into my work with Marvlous, I asked her if she had ever considered writing her memoir. She said her family and friends had suggested this many times, but she did not think her story was anything out of the ordinary. I came to see her the day after her ninety-fi fth birthday, and she told me she had received calls from family members, all of whom urged her to write her life history. She said she supposed she should not wait any longer, but she could not figure out how to begin. Fortuitously, I had a clinical supervisor who was interested in oral history. When I said I wished I could record Marvlous’s stories, she suggested I have Marvlous sign a release form and “go for it.” Had this not been the case, the story I am about to tell would not have been the same. The next time I went to see Marvlous, I broached the subject of recording her story. I assured her that she would have complete control over the content of the recordings and that I would erase anything she decided she did not want to keep. I was careful to let her know that I would check in with her at the beginning of each session to make sure she felt like recording that day, and that the recordings were confidential unless she chose to share them. I explained that, as an oral historian, I would not be asking her a series of questions but simply asking her to tell me about her life. Although Marvlous said she had nothing important to say, she was interested to see what might come of this experience. When I entered the room, I was her therapist, and I was always prepared to remain in that role if she needed me to do so. I listened to her talk about her physical pain and about how difficult it was to have to rely on her aide

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for the kinds of things she took for granted when she was still independent. But Marvlous did not want to dwell on her troubles; once we began recording her stories, she was impatient to get to it, and I followed her lead. From the moment I took out the recorder, which I never did without first asking her permission, her demeanor changed and she became a historian. She began making notes between sessions, jotting down things to remember for the next interview, and brought out boxes of photographs and newspaper clippings to illustrate her stories. Each week, I brought her a CD of the previous session, which she listened to with her aide. One interview was briefly interrupted by a phone call from Marvelous’s grandson. He wanted to tell her about his new job. She said, with great enthusiasm, “I can’t talk to you now. I’m writing my book!” The following is the story Marvlous told me. I have co-constructed it, using the recordings and transcripts of my interviews. •

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The circumstances of Odie Furye’s early life remain a mystery. He had been orphaned at age ten and was living with an aunt in Dallas when he decided to leave home. No one knows how twelve-year-old Odie made his way from Texas to Alabama. All he had with him when he made the trip was a bag full of starched collars. In those days, you could eke out a living selling starched collars. He made it to the town of Tuskegee, but someone stole the collars before Odie arrived there. That would have been about 1896. When Odie arrived in Tuskegee, he found a job as a houseboy for Booker T. Washington, who, only a few years earlier, had founded Tuskegee University. With Washington’s encouragement, young Odie set his sights on education, and he graduated from Tuskegee in 1902 with a degree in engineering. After graduation, Odie moved back to Texas, where he went on to found the first black high school in Dallas, a technical school for young men. Odie was teaching in Dallas when he married Ethel Everett, who had been one of his students. He provided well for his family, so his wife did not have to work. Marvlous was born to Odie and Ethel in 1915. She did not know why her mother named her Marvlous, but when people asked her, she told them she was glad her mother had not named her Awful. When Marvlous was a young adolescent, Odie got a job teaching at Booker T. Washington High School in Memphis, Tennessee. Marvlous

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was happy in Memphis and attended the school where her father taught. She was proud of his role as a teacher of design engineering and remembers how he labored over hand-drawn blueprints. Sadly, when Marvlous was only fourteen, Odie died. After Odie’s death, Ethel took her children up north. Although Marvlous had experienced racism growing up, her parents tried to minimize its impact on their children’s lives. Racism would play a far greater role in Marvlous’s life after she moved to Westchester County, New York. The only work her mother could get was cleaning houses. She worked three jobs to support her children. Marvlous and her sisters knew that the only way to ease their mother’s burden would be to get married. William Harrison was a handsome young man who seemed to have a promising future as an auto mechanic. He was five years Marvlous’s senior, and she was only sixteen when he proposed. Ethel pushed her daughter to accept the proposal, so Marvlous left school to get married. She knew that, had her father been alive, she would have stayed in school and become a teacher. She carried this regret with her until the end of her life. Marvlous never wanted to think of her husband as abusive, but the night he held a knife to her throat, she grabbed their two daughters and ran to a neighbor. The next day, Marvlous left with the girls and moved to New York City with a promise to herself that she would do anything to make sure her children got an education. Like her mother, Marvlous had to do “day work” to support her children. There were times when she would go without food in order to make sure her children had enough to eat. In the early 1960s, Marvlous heard about a job at the American Jewish Committee (AJC). The committee was supporting the civil rights movement and hired Marvlous, training her as a switchboard operator. She would stay there until she retired, thirty years later, working her way up to office manager. Marvlous was inspired by the mission of the AJC and threw herself into working for civil rights. The AJC sent her down south on many occasions, to demonstrate and to work in one of their regional offices. The most momentous of these occasions was in 1965, for the march from Selma to Montgomery, Alabama. Marvlous was sent with a delegation of prominent white men to take part in this demonstration. She was there on March 7, Bloody Sunday. When Marvlous retired from the AJC, she dedicated herself to doing volunteer work for CancerCare. Marvlous took her volunteer work seriously

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and received several awards for her service. When she became too ill to continue working, she fell into a depression. A couple of years into our work together, Marvlous began having severe abdominal pain and was diagnosed with metastatic colon cancer. As her social worker, I was prepared to abandon our oral history work, to help her on the difficult journey to the end of her life. But Marvlous wanted, more than ever, to continue recording, and I honored her wishes. She said to me, “It wasn’t supposed to be like this. I had so much more I wanted to do.” I found myself thinking about her historical legacy and spoke to her about the possibility of leaving the recordings of her stories to an archive. She was thrilled with this idea and, with permission from her daughters, I contacted the archive at Tuskegee. The director of the archive invited me for a visit. Before I left, Marvlous asked me if I could find out the name of the aunt who took care of her father when he became an orphan. The trip to Tuskegee was moving and enlightening. The director of the archive brought out several large, crumbling tomes. There, in Odie Furye’s own hand, was written the name of his aunt, along with her address in Dallas; there was his transcript; and there was evidence that, as a student in technical engineering, Odie Furye had helped Booker T. Washington build his house, which still stands on the campus of Tuskegee University today. I photographed these pages to bring back to Marvlous and her family. After my visit to Tuskegee, it occurred to me that the archive at the American Jewish Committee, where Marvlous had spent most of her working life, might also be interested in her story. Once again, with the authorization of Marvlous and her daughters, I contacted the director of the archive at AJC. She said, “Marvlous! She’s still alive? I have a picture of her on my wall. Could I meet her?” AJC’s annual conference in Washington, DC, later that year, was to be about racism. The director of the archive was writing a one-act play about the Selma–Montgomery march, to be performed at the conference. She asked Marvlous if she could write her into the play. Marvlous, who never lost her wry sense of humor, said, “Yes, but you’d better get someone glamorous to play me!” The following week, the director came to see Marvlous, with a photo of the stunning young woman who would stand up before the public and say, “I’m Marvlous.” AJC had offered to send a technician with a computer to Livestream the performance so that Marvlous could see it and say a few words

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to the audience. Unfortunately, Marvlous took a turn for the worse and died before the conference. AJC paid for her relatives to come in her stead. The day before Marvlous died, I was at her bedside, along with her loving and dedicated aide.2 I had recorded the African-American “national anthem,” “Lift Every Voice and Sing,” on my phone and played it softly next to Marvlous’s ear.3 Tears rolled down her face, and mine, as we shared this powerful moment of the coming together of Marvlous’s own life story with the stories of a collective memory. •

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When Marvlous died, I was both saddened and relieved—saddened because I would no longer have precious moments shared with her, but relieved because she had suffered so much pain at the end of her life. Sharing her story with me was a gift and helped her recover from depression. At the beginning of our work together, Marvlous felt she had nothing important to say. Shortly before she died, she spoke about the way in which telling her story had changed her perspective: Well, really, in the beginning I never thought that I had enough important information that would end up in a book, to tell you the truth. I didn’t think I had enough that would merit me doing a book. And then I realized that some of the things I had in my past—or my family’s past, rather—were really history. I never thought of it like that before, but I realize now that it is important and it is history and it should be recorded. But there’s so much more to be told, and I don’t know which way it’s gonna go, you know?

My work with Marvlous presented a unique opportunity to utilize oral history within the framework of therapy. lo o k i n g f o r j o e y

The following case history will illustrate the transformation of a client’s story from chaos to coherence, through a co-constructed narrative approach, using music and writing as the medium. I never recorded this client’s stories, but I did have the opportunity to review with him my retelling of the story. Joe was sixty-eight when he considered jumping off his terrace.4 The face of a young woman he had known many years before, who had died by the

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same means, flashed before his eyes. Joe became frightened and asked his wife and daughter to help him. His wife had heard about our clinic from a friend, and she called to refer Joe for treatment. Joe had never had therapy before, and he was desperate. In the beginning of our work together, Joe would cross his arms defensively and ask how just talking to someone could help him. I, in turn, asked him to give it a try, but I added that it is not magic and that I couldn’t promise him it would work. The only thing I could offer was my expertise as a listener and the ability to help him tell his story. Joe was living a life of disappointment, anger, and regret. He was in a perpetual state of stress, drinking too much and smoking a pack of cigarettes a day. He was skeptical that anything could help him, but he was willing to try. I asked him to tell me about his life and, little by little, Joe told me his story. As he realized that I was not judging him, he began to trust in the process. He began to feel safe in sharing his feelings. Here is his story. •

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Joe was born in a coal mining town in Utah, the youngest of five children, and the only son, of immigrants from Yugoslavia. His father was a harddriving man who wanted his son to follow in his footsteps and become a miner. Joe was terrified of the mines, yet he did not want to disappoint his father. The economic downturn of the coal mining industry in the 1950s led to the closing of the mines, and the family moved to Colorado, where they eked out a living on a peach farm. Poverty colored Joe’s life. Joe’s mother was a kind and gentle person who loved to play the accordion and sing. Joe inherited his mother’s love of music, but as he grew up, he found himself drawn to acting. He spent Saturday afternoons at the movies and dreamed of a career on the stage. His father did not approve, so when Joe finished high school, he joined the navy. It seemed like a “manly” endeavor, designed to gain his father’s approval and provide him a means of leaving home. Shortly after he began his basic training, Joe passed out, shell in hand, and fell down a flight of stairs on the ship. He was diagnosed with epilepsy and given a medical discharge. Joe was afraid but dared not express his fear. His grandfather had suffered from epilepsy, but the family never talked about it. After his discharge from the navy, Joe returned home, with no idea of what to do. He eventually decided to move to New York City, as it afforded

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him the opportunity to study acting with some well-known teachers. Joe arrived in the big city with only twenty dollars in his pocket. He got a job in a liquor store and began his quest to become an actor. He began going on auditions, but tension often built up, so that he had seizures either at the auditions or on sets, after securing minor roles. Joe discovered that a drink would calm him down. Bourbon became his trusted companion. Joe met Phyllis in an acting class. She was stunningly beautiful and Joe was enchanted by her. The fact that Joe was white and Phyllis was AfricanAmerican did not faze them, and they decided to marry. In the 1950s, a mixed-race couple faced many challenges, and tensions mounted in the marriage. When their daughter was born, Joe felt the additional responsibility of providing for a family. He was not having much success as an actor and, with no other skills, he could only find work in liquor stores and bookstores. He began to feel like a failure and was drinking more than he should. Joe eventually moved out, but during the separation he realized how much he loved his wife and daughter and asked to come back. The family was reunited, and he and Phyllis are still together today. During the course of our work together, Joe came to realize that he had never allowed himself to face the fact of his epilepsy. He had been given medication when he was in the naval hospital, but that was not enough. I suggested he attend a meeting of the Epilepsy Foundation, and he agreed. Although he was uncomfortable in group settings, he continued to attend the meetings, finding he could provide advice and comfort to the mother of a young child who was suffering from seizures. He began to feel better about himself but still was not ready to mourn the loss of his dream of becoming an actor. The next step was to help Joe learn to reduce his stress. Through the Epilepsy Foundation, Joe learned of a nearby teaching hospital that was conducting a study on the effect of yoga and meditation on seizure disorders. Monetary compensation was offered to study participants, so Joe decided to sign up. After beginning the study, he went six months without a seizure, and when the study was over, he continued to practice yoga and meditation. He went a year without a seizure, and then two years, and then five. Joe stopped drinking and smoking, as he found these habits interfered with his practice. The relief from the seizures allowed Joe to begin confronting the reality that he would need to give up his dream of becoming an actor. Joe and I

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started to talk about what other path he might take. From the time he was a teenager, he had secretly harbored the desire to become a singer. I encouraged him to put on music and sing at home. Joe discovered a senior center in his neighborhood with a weekly open mic session, and he became a regular participant. Joe began making connections between the songs he was singing and the memories and emotions he was sharing with me in our sessions. He dreamed of putting on a show in which he would tell the story of his life in song. Over the next two years, Joe worked on transforming his dream into a reality. Every week he would come in with a new “episode”—a memory he expressed, both in song and in writing, as he used text to form a bridge from one song to another. He was creating a coherent narrative from a chaos story, and the process itself was sustaining him. Wever (2009, 29) states, in her article on the power of music as narrative, “Music is a universal language that resounds, celebrates, and mourns. . . . People can take their songs into places where their alternative stories might not otherwise be proclaimed.” When the show was finished, Joe wished he could find a place to present it to friends and family, but he had no money to rent a space and hire musicians. An unexpected turn of events opened a new door: Joe received a call from a government representative, who informed him that there had been a class action suit against the coal mining industry. Joe’s father had died of black lung disease, so Joe and his sisters were each to get shares in a settlement. Joe called his show Looking for Joey. I was in the audience at the first performance and was profoundly moved when Joe stepped out on the stage. Joe sang and spoke of his childhood, his journey to New York, and his love for his wife and daughter. Suddenly, the stage lights began to flash and the instrumental music sounded ominous. Joe enacted a seizure and fell to the ground. The people in the audience gasped, until they realized this was part of the show. The man who had spent much of his life hiding from his condition was now showing it to the world. At the end of the show, Joe’s wife and daughter came up to join him. Together they sang what was to become their song, “Love Is Here to Stay.”5 r e fl ect i o ns

Because the narrative work detailed in this chapter took place in a clinical setting, I was bound by the guidelines of agency policy, which, in its turn,

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is regulated by the New York State Office of Mental Health. Given recent regulatory trends, it is unlikely that I would have the same opportunity to record a client’s life story today, or the luxury of spending so many months with a client, co-constructing a cohesive narrative. Short-term, behavioral, outcome-focused treatment has become the gold standard, which leaves scant time for the gradual process most older clients prefer. Ritchie (2015) suggests that, when interviewing older people, it may advantageous to pose more than one question and so provide an interviewee more time for recollection. This is not to discount the therapeutic value of narrative in shortterm work. In using oral history as a therapeutic strategy, we must note some caveats. Comparing oral history with psychotherapy, Rickard (1998) observes that “putting all the details of your life in one place” is intrinsic to the oral history interview. However, this process may pose a challenge for the client when recording life stories in the context of a psychotherapy session, as client becomes a “subject” and therapist, in turn, a recorder and not an interpreter. Ritchie (2015) reminds us, too, that remembering painful events may have a retraumatizing effect, unleashing a flood of excruciating emotions. Clinical sensitivity is crucial here, but it takes time to develop. Early in my career, I encouraged a Holocaust survivor to tell her story too early in our work together, and she ran out in the middle of a session, never to return. Years of oral history interviewing experience have taught me much about establishing rapport, about deep listening to trauma narratives, about when to reflect and support and when to sit quietly with another’s pain. Practical questions arise, as well. The use of technology in clinical social work is challenging the ethical and legal boundaries of traditional talk therapy. Electronic record keeping, telemedicine, and the transmission of confidential information by e-mail all raise questions about Health Insurance Portability and Accountability Act compliance and confidentiality. How do we configure informed consent to secure a client’s permission to record a narrative? Who owns the material, once it is recorded, and can it be shared? What if a client experiences a change of heart after a narrative has been recorded? And what happens to the material after a client dies? Social work students may wonder whether it is necessary to have formal training in oral history to use narrative effectively in therapeutic work. Although such training is not essential, learning about narrative practice can deepen our understanding of the power of story. The available literature,

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trainings, workshops, and online resources surely can enrich a practitioner’s narrative work. Such shared experiences represent the convergence of client/interviewee and therapist/interviewer in the dimension of intersubjectivity, and intersubjectivity lies at the core of both the oral history interview and the psychotherapeutic relationship. Summerfield (1998, 20) has written, “The process of the production of memory stories is always dialogic or intersubjective in the sense that it is the predictor of a relationship between a narrator and a recipient subject, an audience.” Zimmerman and Dickerson (1996, 4) describe the metaphoric synergy of the therapeutic relationship: “The metaphors therapists use shape their clients’ view of themselves and their view of the problems for which they seek help. These metaphors shape the therapists’ view of the same things. They even shape therapists’ view of what a therapist is and the form therapy and the therapist are supposed to take.” Finally, Kay (2005, 467) finds that the therapeutic relationship, or alliance, is “the single most potent predictor of psychotherapy outcome regardless of modality.” In both therapy and oral history, co-construction is the process by which an individual’s story is told and involves another person’s facilitative, empowering, and relational contributions. It is a voyage that can take both client/interviewee and therapist/interviewer in new and unexpected directions, a process that can yield for both new and invaluable meaning. As the poet Audre Lorde (1984, 162) wrote in a letter to her therapist, “Some part of my journey is yours too.”

n ot e s

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Marvlous gave me permission to use her real name, as well as the names of all the other members of her family mentioned in this story (Odie Furye, Ethel Everett, and William Harrison), for purposes of publication. 2 Charmaine Caballero took care of Marvlous for eight years. I interviewed her shortly before Marvlous died, and it was she who called me to tell me of Marvlous’s passing. 3 Written as a poem by James Weldon Johnson in 1899 to honor Booker T. Washington, and set to music by his brother John Rosamond Johnson in 1900, “Lift Every Voice and Sing” became one of the most cherished songs of the civil rights movement. 4 Joe requested that I use his real name, and his wife requested that I use hers as well. 5 “Love Is Here to Stay” was written by George and Ira Gershwin for the fi lm The Goldwyn Follies (1938).

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references

Frank, Arthur. 1998. “Just Listening: Narrative and Deep Illness.” Families, Systems, and Health 16: 197–212. ——. 2010. Letting Stories Breathe: A Socio-Narratology. Chicago: University of Chicago Press. Kay, Jerald. 2005. “Psychotherapy and Medication.” In Oxford Textbook of Psychotherapy, ed. Glen O. Gabbard, Judith S. Beck, and Jeremy Holmes, 463–476. New York: Oxford University Press. Kenyon, Gary, Phillip Clark, and Brian de Vries, eds. 2001. Narrative Gerontology: Theory, Research, and Practice. New York: Springer. Kropf, Nancy P., and C. Tandy. 1998. “Narrative Therapy with Older Clients.” Clinical Gerontologist 18 (4): 3–16. Lorde, Audre. 1984. Sister Outsider: Speeches and Essays. Freedom, CA: Crossing Press. Merkin, Daphne. 2014. “Making My Therapist Laugh.” New York Times, November 8, http://opinionator.blogs.nytimes.com/2014/11/08/making-my-therapist -laugh. Miller, Jean Baker, Judith V. Jordan, Irene P. Stiver, Maureen Walker, Janet L. Surrey, and Natalie S. Eldridge. 2004. “Therapists’ Authenticity.” In The Complexity of Connection: Writings from the Stone Center’s Jean Baker Miller Institute, ed. Judith V. Jordan, Maureen Walker, and Linda M. Hartling, 64–89. New York: Guilford. Nelson, Alondra. 2008. “The Factness of Diaspora.” In Revisiting Race in a Genomic Age, ed. Barbara A. Koenig, Sandra Soo-Jin Lee, and Sarah S. Richardson, 253–269. New Brunswick, NJ: Rutgers University Press. Polkinghorne, D. E. 1991. “Narrative and Self-Concept.” Journal of Narrative and Life History 1: 135–153. Rickard, Wendy. 1998. “Oral History—‘More Dangerous than Therapy’? Interviewees’ Reflections on Recording Traumatic or Taboo Issues.” Oral History 26 (2): 34–38. Ritchie, Donald. 2015. Doing Oral History. 3rd ed. Oxford: Oxford University Press. Shopes, Linda. 2002. “Making Sense of Oral History.” History Matters: The U.S. Survey Course on the Web. http://historymatters.gmu.edu/mse/oral/.

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Summerfield, Penny. 1998. Reconstructing Women’s Wartime Lives: Discourse and Subjectivity in Oral Histories of the Second World War. Manchester: Manchester University Press. Walker, Maureen. 2004. “How Relationships Heal.” In How Connections Heal: Stories from Relational-Cultural Therapy, ed. Maureen Walker and Wendy B. Rosen. New York: Guilford. Wever, Chris. 2009. “Musical Re-tellings: Songs, Singing, and Resonance in Narrative Practice.” International Journal of Narrative Therapy and Community Work 3: 28–42. Zimmerman, Jeffrey L., and Victoria C. Dickerson. 1996. If Problems Talked: Narrative Therapy in Action. New York: Guilford.

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Narrative Social Work with Groups to social group work, each designed to meet the needs of a particular client group and practice setting, are presented here.

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Narativ (a trademarked approach to storytelling) is used with truck drivers in Kenya. A list poem is composed by older adults suffering the effects of Alzheimer’s disease. A close reading and reflective writing group is held with nurses and residents in a large metropolitan hospital. Mothers involved with the child welfare system are empowered to write and publish their stories.

Benaifer Bhadha presents her narrative work with a group of Kenyan truck drivers who feared being tested for HIV/AIDS. Combating secrecy and stigma through helping participants tell their stories and listen to the stories of others, Bhadha assists the group in overcoming their fears and finding ways to effect changes in their personal lives as well as in public health policy. Mary Hume tells of the uses of poetry with a group of Alzheimer’s patients. Patients recall and recite long poems learned in childhood, thrilling

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counci l on s oc i a l wor k e d u c at i on soc i a l wo rk c o m p e t e n c i e s

The authors introduce the reader to individuals whose lives are marginalized or whose opinions are disregarded: cognitively impaired elders, people with HIV/ AIDS, mothers deemed incapable of caring for their children, a parent who searches in vain for support in raising her developmentally disabled son. 3. Advance Human Rights and Social, Economic, and Environmental Justice 5. Engage in Policy Practice Apply critical thinking to analyze, formulate, and advocate for policies. The impact of the narrative approaches used in the groups described reach beyond the participants to larger social goals. The authors challenge preconceptions about who they and their clients are and what they are capable of achieving.

themselves in the process of remembering. Together they write a list poem beginning with “I like . . .” The vitality of the finished poem and the process shed new light on what people diagnosed with cognitive impairment are capable of, as well as the need to create connection and community. Heidi Mandel is propelled by her own experience of facing unresponsive professionals to introduce a close reading and reflective writing group to health care providers at a large metropolitan hospital. Although she fails to engage the medical staff, her successful intervention with nurses demonstrates the potential of the method and paves the way for systemic change. Nora McCarthy and Rachel Blustain run groups in which mothers who have had bruising encounters with the child welfare system are provided with the mentoring and writing skills necessary to tell, write, and eventually publish their own stories. In so doing, parents provide accounts of self that offer a needed counterpoint to prevailing bureaucratic beliefs.

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Storytelling and Listening COMBATING THE STIGMA AND SECRECY OF HIV/AIDS IN  K E N YA



b en ai fe r b h a d h a

We are going to be heard, and you are going to bring a change to the others who are waiting for your story. Don’t be afraid, my friend. f r a n c i s r u wa

t h e s ea - fac e and th e s tati o n m y n a n a a n d pa pa live in a tall apartment building right on the sea-face. In the afternoon, on my way home, I sit in the backseat of Papa’s olive green Mercedes-Benz and watch the boardwalk as the driver drives me home. There are women in salwar kameezes, walking arm in arm; young men crouching low on the concrete Tetra blocks that protect the seawall during monsoon season; and old men in white turbans, pulling wooden carts stacked fifteen feet high with green coconuts. A wall surrounds the apartment building. When I play downstairs in the parking area, I cannot see beyond it. At the bottom of the driveway, down the hill, is a turquoise gate that is manually opened by a guard who salutes us as we drive by. When we leave the area, the boardwalk gives way to narrower streets, the traffic starts to build, and double-decker buses let hundreds of pedestrians out onto the sidewalks. We idle in traffic, sometimes for hours, and I stare out into the street: a man in a suit reading the newspaper; two women in dresses and sunglasses, laughing; six people on one another’s laps on a single motorcycle; three-wheeled rickshaws; bullock carts; bicycles. In the middle of the street, two boys run to the sides of cars, selling pinwheels and magazines.

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Then, a woman in a dusty sari, her pallu over her head, holding in her arms a naked child with hair that is twisted and knotted, walks down the street. One by one, the men and women in cars turn away from their windows. The dusty woman knocks on the window of each car, brings her fingers together and then to her mouth. If a car has curtains, the people inside draw them closed. All I can do is watch. I cannot take my eyes away from this woman and her child. My heart beats fast, my face fi lls with heat, and I stay sitting in the back of the car. This is the India I knew: traveling by car, eating in aunties’ kitchens, and playing behind walls. But walking through busy streets on the way to a store or market, I saw things that made the center of my chest hurt. No one said anything about how we lived and how others lived. When I was eighteen years old, I joined a service and immersion program and went to La Estación, an abandoned railway station turned shantytown south of Mexico City. Walking through a maze of attached metal houses, rusted and uneven, I reached a woman’s home. I sat on her couch, which served as a bed for her youngest two children. The woman stood in front of me and started to speak. I listened to her story of selling roses on the street to people sitting in air-conditioned cars. She woke every day at three a.m., walked miles to pick up her roses, walked miles to town to sell them, and then walked home. She showed me through her two-room home while her children giggled and played peekaboo behind a curtain. She fed us from a one-burner electric stove. Before I left, she thanked me over and over again for listening to her story, and gave me a rose. I am fascinated by these contrasting moments in my life: the love and connection I felt for this woman when she told me her story and let me into her life, and the intense longing for connection that I experienced in my childhood country. What existed in one instance that did not exist in the other? t h e s t i g m a o f s h am e

Erving Goffman (1963, 3), one of the first American sociologists to present stigma as a social construct, defines stigma as “the situation of the individual who is disqualified from full social acceptance” and “an attribute that is deeply discrediting.” He goes on to say that if someone does possess an attribute that makes him different, “he is thus reduced in our minds from a

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whole and usual person to a tainted, discounted one.” Stigma creates two groups: those who have an undesirable attribute and those who do not. In my limited childhood world, there were two groups: those who traveled in cars and those who lived outside those cars. The two were separated to such an extent that their eyes never met. These groups never heard each other’s stories, never shared vulnerability. We lived in a world fi lled with silence, secrecy, and judgment. I now know that I witnessed the extreme poverty and classism that exists in India and experienced a painful disconnect wherever I went. The scholar Brené Brown (2010) and others (McPherson, Smith-Lovin, and Brashears 2006; Holt-Lundstad et al. 2015; Patterson and Veenstra 2010) have researched the debilitating effects of shame, which causes social isolation and risk of early mortality. Conversely, some writers note the sustaining, life-enhancing effects of strong social connections, including fewer stress-related health problems, lower incidence of mental illness, and faster recovery rates from trauma and illness (see Diener and Biswas-Diener 2008; Fredrickson 2009; Lyubomirsky 2008; Rohde et al. 2015). Brown (2010) cites vulnerability as essential to feeling connected to others: “When we let ourselves be deeply seen, when we are vulnerable and authentic, we live a wholehearted, connected life.” I see the difference now. The woman I met at La Estación allowed herself to be vulnerable and deeply seen by sharing her story with me. I received her story by listening without judgment. The result was not isolation or shame; rather, it was connection. That connection is what I longed for in my home country. So how do we combat shame, disconnect, judgment, and stigma that is so debilitating that it isolates people and prevents them from accessing lifesaving interventions? How do we allow ourselves to be vulnerable so that we can connect to other human beings who, at face value, are different than we are? If I have learned anything from life, from research on stigma, isolation, and shame, and from the many stories I hear in my career as a storyteller and advocate, the answer lies in creating a space where true listening and authentic telling can be shared and connections made. s tor i e s i n g arbag e bag s le ave a l e gac y

In 1994, Murray Nossel was completing his doctorate in anthropology and working as a social worker at the AIDS day program in Brooklyn. Every

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week, he watched people die. Their belongings were left in black garbage bags that no one came to collect. He thought that, even if no one was there to pick up belongings that were left behind, at least people could leave their stories with him and with other members of the program. Nossel created a space where members of the program could leave a legacy of stories in each other’s memories and on tape. Every week, he ran a storytelling group where participants listened openly to one another and told personal stories (Nossel 1999). Over the next two years, Nossel and his childhood friend Dr. Paul Browde founded a company, Narativ, to promote the trademarked Listening and Storytelling Method, to create listening spaces where people can feel free to tell their true stories. Over the past twenty years, Narativ has developed, researched, and refined this method, which has subsequently been used with marginalized populations in more than fift y countries. I first saw Nossel and Browde in a basement classroom, while I was studying for my master’s in social work. Instead of a lecture, the two sat in the front of the room and told the story of their friendship. As one person spoke, the other simply listened. When one person’s story ended, the other’s story seamlessly began. Together, they created a relational space where connection could be made. I was mesmerized. t h e l i s t e ni ng and s to ry te lli ng m e t ho d

The Listening and Storytelling Method is based on the belief that there is a reciprocal relationship between listening and telling. One cannot exist without the other. When someone tells his or her story, the telling is a liquid poured into a bowl shaped by listening. Listening gives telling its shape. If the bowl of listening is wide open, a person has space in which to tell his or her story. If the bowl is short and narrow, like a single-stem vase, for example, there is less space for a story to flow. If someone has lots to tell, and others do not provide much listening, the story fills the bowl and spills. Not listening puts a lid on the bowl, and then there is no vessel to hold or shape a story. Many things affect the way we listen. There are physical obstacles, including loud noises, heat, cold, hunger, or a headache, and internal obstacles, such as anger, fear, or a tendency to judge, which interfere with listening.

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i n v i t e d to m o m bas a

The International Transport Workers’ Federation (ITF) is a global federation that represents more than 4.5 million workers from 150 countries and promotes respect for trade unions and human rights. ITF recognizes that transport workers are vulnerable to HIV/AIDS due to long periods of being away from their families and engaging in unprotected sex along highways and in truck stops. HIV/AIDS is a global crisis. The virus knows no frontiers and is present in every country. With globalization and the demand for goods that are transported across and within borders, populations in transit are particularly vulnerable to contracting and spreading HIV. In many countries served by ITF, vulnerability to HIV infection is viewed as the consequence of individual choice rather than as a result of cultural, socioeconomic, and institutional factors that shape behavior patterns. Failure to acknowledge these factors or blaming individuals lead to failure to see the epidemic as a collective problem affecting all members of society. One of ITF’s primary goals is to raise awareness and to end the stigma surrounding HIV/AIDS that prevents workers from accessing lifesaving treatment and preventive services. In 2009, Narativ designed and implemented a program to combat the stigma of the epidemic, so that transport workers felt empowered to unite as a group affected by HIV, to speak openly about the disease, and to take action in their own interest, consciously altering structures of inequality, subordination, and persecution. Murray and I designed a program to bring together people infected with or affected by HIV and to break down the fear, silence, and stigma surrounding HIV/ AIDS through the sharing of personal stories. des i g n i n g a p ro g ram

In March of 2009, Murray made his first visit to Mombasa, Kenya, on a fact-finding mission. He met with Dr. Asif Altaf, ITF’s global HIV/AIDS coordinator, and Anna Karume, the education coordinator in ITF’s Africa office, to understand the sociopolitical and economic factors affecting Mombasa’s transport workers and to meet people who wanted to take part in Narativ’s program. In this design assessment phase, Murray held interviews and focus groups with people from every group represented by the

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union’s community: union leaders, professionals who worked at the union’s health clinic, truck drivers, dockworkers, and union workers, inviting them all to tell their personal stories of HIV. At a meeting in which the storytelling project was presented to fift y union officials, Simon Sang, general secretary of the dockworkers’ union in Mombasa, said, “The worst opportunistic illness is stigma. People need to understand that everyone is susceptible to this disease.” Sang then introduced Francis Ruwa, the only man in the union who was open about his HIV-positive status and had told his story in public. “People were getting moved,” stated Sang. “They were in tears, which means that they were getting the message. Storytelling can make the biggest impact, even more than the ARVs [antiretroviral medications].”

mr . r uwa and th e s ti g m a o f h i v

Ruwa is open about his status, has started an HIV-positive support group, and is an educator and advocate. In 2009, when Murray first met Ruwa, he was not open about his HIV status. He was getting thinner every day, unable to walk long distances or to work at the transport union. He kept silent about his diagnosis because he was filled with fear and self-stigmatizing shame. He persistently refused testing and, instead of going to his union’s clinic to receive treatment, used personal finances to purchase medication on the black market. After exhausting his own money, he sold his land to buy medication, but it was not working. He got sicker and sicker, suffering from AIDS-related opportunistic illnesses. He isolated himself from his family, thinking he would leave his wife a childless widow. With his T-cell count dwindling, he finally made the decision to connect, seek medical attention, and come out in his workplace. This is what he told Murray: When I started coming out, it was so difficult. The first time I gave my speech, I gave it at my workplace—that is, the clinic—and my dad was working there, too. I remember I saw him in tears and he left the place. And so many people cried, looking at me. They all thought I would still die, because when I started coming out, I looked so thin . . . only to find that I keep on improving day by day. It has really made an impact, because whenever I tell people about my story . . . I get one or two people coming up to me, re-

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vealing their status and requesting help to cope with their situation. Now, after coming out openly . . . at the workplace, trying to teach people to live positive, encouraging people, motivating others to come out, I really helped a lot. I helped the organization, especially in the field of HIV/AIDS. But my dream actually wasn’t the organization alone. The whole world is suffering. I really want the whole world to hear my story.

Ruwa’s story demonstrates how stigma resulted in secrecy, silence, and almost death. When people are silent, they do not acknowledge risk, seek testing, obtain treatment, or talk about HIV at the vulnerable person-toperson moment when transmission can occur. In the context of HIV stigma, an individual who is HIV-positive is “rejected” and put into a group that is seen as different, separate, and less-than (Yebei, Fortenberry, and Ayukua 2008). The intense and constant rejection, isolation, and otherness that is felt as a result of stigma can be easily internalized and turned into “self-stigmatization,” the shame that a person feels because he or she has accepted aspects of stigma to be true (Fortenberry et al. 2002). During listening and storytelling programs that we facilitated in Mombasa, we heard firsthand accounts of how having an HIV diagnosis can lead to being excommunicated from church, expelled from family, discriminated against in the workplace, or subjected to verbal, emotional, or physical abuse. The effects of stigma surrounding HIV and AIDS breed intense shame and isolation, which prevents people from getting tested and receiving necessary treatment, frequently costing people their lives (Earnshaw and Kalichman 2013; Hamra et al. 2006; Karim 2011; Rankin et al. 2005; Yebei, Fortenberry, and Ayukua 2008). At the World Conference Against Racism, Racial Discrimination, Xenophobia and Related Intolerance, Peter Piot, the executive director of UNAIDS, stated, “HIV stigma comes from the powerful combination of shame and fear. . . . Shame must be replaced with solidarity. People living with HIV are part of the solution, not part of the problem—they are the world’s greatest untapped resource in responding to the epidemic” (Piot 2001). Time and time again, studies that evaluate HIV stigma–reduction programs show that empowering people and working with them on an interpersonal level is the most effective way to combat stigma and shame

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(Campbell 2003; Brown, Macintyre, and Trujillo 2003; Nyblade et al. 2009; Parker and Aggleton 2003). Campbell’s research is particularly illuminating in this context. Campbell spent years evaluating a peer education project in a South African mining town, which was designed to change the collective norms that endangered the health of three key groups: sex workers, miners, and young schoolgirls (Campbell 2003). She found that this attempt at change failed because people in positions of power were not engaged or involved and therefore were not supportive. Campbell’s research strongly suggests that, in order for HIV prevention programs to work, all members of the community must have a role in design and implementation. To have the maximum impact, people in positions of power and people who come into regular contact with the at-risk group must also be included in programming. Furthermore, Heijnders and Van Der Meij (2006) found that empowering people living with HIV to assist in the development, promotion, and implementation of stigma-reducing programs on an organizational, community, and/or structural level can make a marked difference in systemwide levels of stigma. During the design assessment–phase interviews, it became clear that every person, no matter what group they belonged to, had an HIV-related story. So, in order to create a program to combat system-wide stigma, every person would have to be involved. This meant that people in positions of power, like union officials and clinic workers; member of the affected population, such as the union members who were open about their HIV status; and the most vulnerable populations, the truck drivers and dockworkers who feared getting tested because of stigma, would all be a part of the program. This was a system-wide issue, and all levels of the system had to be enrolled and involved in order for this to work. t h e l i s t e ni ng and s to ry te lli ng wo r k sho ps

Six weeks after the design assessment trip, Murray and I boarded a plane to Mombasa. We had one week, one person who was open about his HIV status (Ruwa), and four groups who were waiting to tell their stories: truck drivers and dockworkers; union members, who had created an HIV-positive support group; doctors and nurses at the Kenya Ports Authority clinic; and leadership of the dockworkers’ union. We were going to lead a story-

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telling and listening workshop with each group for a day, providing a space where people could learn how to listen to one another and share personal stories. On the final day, we planned to bring all the groups together and create a witnessing ceremony, a space to share and listen to every person’s story. On our first working day in Mombasa, we entered a small conference room. I unstacked a tall tower of chairs and arranged them in a circle, made sure there was sufficient food and water, adjusted the temperature, and informed the conference center that no one should walk into the room at any time, so we could have complete privacy. These things may seem simple, but it is essential to create a physical space where you can limit external obstacles that may impede listening. Having a space where everyone is on the same level and can see one another, where you have access to nourishment, and where participants can be as comfortable as possible are all essential in creating an optimal listening environment. “con fi de nti ali ty o f th e m o m e nt”

In Murray’s assessment trip, he had heard that this specific group might be resistant to talking about how HIV/AIDS impacted and/or affected their lives. Something surprising happened in our first meeting. Safety was created, because the only people in the room, besides Murray and me, were fellow truckers and dockworkers. There were no officials or union members present, no fear that anyone would enter the room or overhear a conversation. And there was a mutual agreement made, before we began telling stories, that everyone would uphold “confidentiality of the moment.” Confidentiality of the moment is more than just agreeing not to report a story outside of the workshop space. It asks all participants to understand that, just because someone shares a story in a moment, it does not mean that they will want to talk about it again at a later moment. Sometimes it feels right to tell a personal story, and then, once it is told, a person may not need or want to talk further about it. We asked everyone to respect this and, if anyone had a question, to ask the teller’s permission to ask about a story, to respect the teller’s decision. We also discussed the obstacles to listening mentioned earlier in this chapter. Together, we unearthed the fear, shame, and isolation that come with talking about HIV. Participants agreed to offer openhearted listening that was free of the judgment, opinion, and criticism they feared in the outside world.

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One by one, people said they were willing to engage in this type of listening, and they began to tell their stories. The truck drivers shared their experiences of lonely journeys, fraught with many challenges: breakdowns, delays, police corruption, highway robbery, significant absences from wives and families, harsh demands imposed by employers, and meeting sex workers, who offer some relief from their daily stress. Alcohol, drugs, and sex assuage these hardships. In the spirit of safety provided by the group, a truck driver, Steven K, revealed that he was HIV-positive. He explained his fears of condemnation and social isolation, and the attitudes about HIV in his community. “HIV is taken as an airborne disease,” he said. “If they know about your HIV, they are afraid to come close to you, afraid to socialize with you. . . . They are afraid they will be infected. When you decide to let them know, automatically you know that friends will run away from you, even your family members.” “James” is a young trucker. He has a closely shaved, round head and a big smile. When he talked, he often clapped his hands together and laughed. He is quiet but he looked at each storyteller who spoke. He told of his truck breaking down and having nothing to eat. He found a small hotel nearby and stayed for a week, waiting for someone from the truck company to arrive and fi x his truck. While he was there, he found out that the woman who owned the hotel did not have a husband, and he had sex with her. At the end of his story, he said, “Even at the moment, I do not know the status of my HIV, unless I go confirm with a test.” James had been tested five years earlier and, since then, had frequently engaged the services of sex workers along the Northern Corridor. We asked him, “Why do you not go and find out your HIV status?” He replied, “Sometimes you are afraid. I am afraid to be tested, because if I find out that I am HIV-positive, it will be a death sentence.” Every group participant was eager to tell their story, speaking to one another as they had never spoken before. In a culture where so many people see HIV as a death sentence and fear stigma, discrimination, and abandonment by families, the workshop stood out as a space in time where anything could be said and any emotion—shame, fear, joy—could be shown. After our day with the truck drivers and dockworkers, we held a second storytelling and listening circle with professionals who worked at the Kenya Ports Authority’s health clinic, which many union members visit when

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they are sick. This is the clinic that Ruwa delayed visiting because he did not want people to know about his HIV status. Clinic professionals shared their frustrations with ethical constraints, such as the inability to inform one spouse that the other is HIV-infected. They talked of feeling helpless when patients presented with advanced AIDS-related symptoms that could have been prevented by earlier detection and treatment. They, too, had stories about family members who were HIV-positive or had died of complications due to AIDS. A senior nurse told the story of an aunt who became very ill with symptoms suggestive of AIDS. Fearing shame and isolation, the aunt refused to be tested. Constrained by the ethical code of respecting the right of an individual to refuse treatment, the nurse witnessed the slow and painful death of her aunt. “She died of self-stigma. . . . Out of that, you can help nobody.” Here, again, we heard of shame, silence, and isolation that led to death. HIV-AIDS was leaving no person untouched. Murray and I hung a poster, which we brought from New York, on the wall where we led each day’s workshop. It was glossy, with two turquoise banners framing a burnt-orange rectangle. In the middle were three yellow men, one covering his eyes, the other covering his ears, and the third covering his mouth. Each had a pink X on his chest. The top banner bore the words “Ignorance = Fear,” and the bottom banner read, “Silence = Death—Fight AIDS, Act Up, Keith Haring, 1989.” When we worked with transport union officials, much was revealed about the complex ways HIV challenges traditional Kenyan values and customs. “Belinda,” an employee at the Kenya Ports Authority and the gender/HIV-AIDS coordinator of the dockworkers’ union, travels the country, educating women about gender-based violence and its relationship to HIV. She spoke out strongly for the necessity of telling one’s story. “When I tell my story, people open up to tell me their stories,” she said. Belinda shared the story of her marriage to a man who engaged in extramarital sexual relations and, for religious reasons, refused to use a condom. Her doctors warned her that she was at risk. Her husband continued to decline condoms; she refused to have sex with him. After he attempted to rape her, she fi led for divorce. Our final workshop was with the Transport Workers HIV-Positive Support Group. Ruwa founded this group, which had been meeting in

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secret to listen to and support one another. One of the group members, “Diana,” told of revealing her HIV-positive status to her sisters: It was thirty-first December, the night before first of January. That first of January, after being tested, everyone was at home, even my sisters. I am the firstborn and my mother had passed away, and we are three girls in the family. I handed over the results of the test to my aunty, and my sisters started crying. There were New Year celebrations going on in the house, and they all stopped. They started thinking of my mother, who passed away with the same illness in 1986. They cried and told me, “Diana, you will die just like our mother.” I told them not to cry, because I knew I would survive. They told me, if I die, they would suffer miserably. My family isolated me; they started spreading the news that I was HIVpositive to people. That I was a prostitute, I will die like my mother. I continued my visits to the clinic, briefing the doctor on my conditions. In the same clinic that I was attending, the clinic at Port Reitz, I found that there was a support group there, too. I joined the support group and they encouraged me. However, when I would go back home I would be abused verbally. I started losing hope, and in that support group I met a woman whom I sat down with and told her I wanted to commit suicide as I had a small daughter to feed. She told me there was no need to commit suicide and I should stay strong in heart. She made me join the support group and they had seminars. These seminars gave me hope, and slowly I survived. I ended opening up. I started educating others. I would give the courage. My family had isolated me, but now they accepted me back—they even came to me for advice in HIV-related issues. I hold no grudges with them. That is my story.

Tears ran down Diana’s face as she told her story. In some parts, she could not speak words—the only thing she could do was gasp for air between sobs. We welcomed her emotions and sat with her, witnessing her pain and holding space as she released her tears and was able to speak again. When she said, “I ended opening up. I started educating others. I would give the courage,” she raised her head and spoke directly to the group, not into the hands resting in her lap. There was light in her eyes and her face was full. Narativ shares important principles: No one can take your story away from you. You are the expert of your own life. Your knowledge and experience are where your courage and power lie. When people gossip, they are

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telling your story in a way that does not value your truth. We have to create safe social circumstances in which individuals can talk openly and honestly about HIV, the circumstances that lead to contracting the disease, the painful experiences of discrimination and persecution, and the triumphant efforts to obtain treatment. When we talk together, we not only break the isolation brought about by stigma but also create the possibility of combating stigma through speaking in a collective voice. t h e defi n i ti o nal c e re m o ny

On our final day in Kenya, we put together a witnessing ceremony for every person who had taken part in the workshops over the past four days. The goal was to bring together dockworkers, truck drivers, union officials, clinic workers, and the HIV-positive support group to listen to stories and to create connection and a collective voice for the future of health in the Kenya Ports Authority. In this ceremony, members from one group sat in an inner circle and the remaining three groups created a listening outer circle around them. Before this moment, truck drivers did not know the stress that clinicians were under, having to keep possibly lifesaving information confidential. Union leaders did not know the harsh living conditions that truck drivers had to endure when their cabs broke down. James, the young truck driver who had been tested five years earlier but did not know his present HIV status, was sitting in the outer circle when Ruwa told his story—a story of refusing to be tested, almost dying, finally coming out about his status, taking ARVs, and having two children, one six years old and the other one year old, who are both HIV-negative. At the end of his story, Ruwa said, “Being HIV-positive is not the end of life. Let’s come out, have one voice. We have to speak for ourselves. If we don’t speak for ourselves, they are going to speak for us, which is so shameful. We are going to be heard, and you are going to bring a change to the others who are waiting for your story. Don’t be afraid, my friend.” That day, the twelve members of the HIV-positive support group decided to come out as HIV-positive. Each one told their story to the community and decided to be public advocates. They spoke out. “Ignorance equals fear. I’m not going to fear again. Whatever I have, I am going to speak and live longer.”

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“Storytelling is even more important than the ARVs, because unless we are willing to say who we are, no treatment is even possible.” “This workshop removed the stigma that had been present for so long. If we speak out together with our stories, we can speed up the search for solutions to the spread of HIV/AIDS.” These stories, which displayed openness, authenticity, and vulnerability, were told in groups that decided not to judge, silence, or assign negative meaning to others’ words. Everyone in the ceremony took on the courageous act of being seen. People connected as they shared vulnerable moments and gave the gift of listening. “l i v i n g i n a ne g ati ve way ”

On our final day in Kenya, Murray and I visited a truck stop. It was a dusty opening off the highway, with a long, turquoise-blue shipping container that had been converted into an HIV education and testing site. James and “Robert,” two of the truck drivers from our first workshop, four days earlier, were sitting on a rock outside the center, talking rapidly back and forth in Swahili. Murray and I asked what they were talking about so passionately. Robert was telling James that he should get tested right away, that there was no point in waiting. James said, “I can go. I can go. I have no problem with the test, and soon I am planning to go for a test.” We asked him, “What made that decision possible?” He replied, “Through storytelling, because I have met with the different people. Some of them are infected and they are living in a negative way and they have a vision for the future.” During the story witnessing ceremony, James had heard that people who were infected with HIV were living as if they were HIV-negative, or, as he put it “in a negative way.” Then Robert and James walked into the turquoise container and got tested. As Murray and I walked away, I thought about James saying “I am nervous somehow” before he told his story, how he carefully watched each driver and dockworker in his group, and how his face lit up as he listened to Ruwa tell his story. When I lead storytelling and listening workshops, I often say stories are the most powerful way to educate and communicate. Stories organize experience, knowledge, and thinking. They are the brain’s way of making sense of human experience. Social problems can be described with often

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forgettable statistics. A person’s story is harder to forget. I remember “James” and Ruwa telling their stories, adding to a collective voice. t h e di ffe re nc e i s   .   .   .

Since our time in Kenya, the HIV-positive support groups have built upon what they learned during the storytelling and listening workshops and have formed the USAFIRI Positive Workers Network, the first-ever network of HIV-positive transport workers to be recognized by the government of Kenya. The organization specializes in using stories as a means of communication and aims to encourage open dialogue about the HIV virus and to challenge inequality and isolation. Its chairman is Francis Ruwa. I facilitate storytelling and listening workshops in the United States, Lithuania, Turkey, Georgia, and India, with sex workers, former drug users, undocumented students, people with physical and intellectual disabilities, abuse survivors, and people who identify as lesbian, gay, bisexual, transgender, queer, or intersex. The people I listen to and share stories with could have been among the nameless men, women, and children I once watched through the window of my grandfather’s green Mercedes. The difference is, when I listen to people’s stories and share my own, we are no longer unknown to each other, no longer as separate and alone. references

Brown, Brené. 2010. “The Power of Vulnerability.” Filmed June 2010. TED video, 20:19. Posted January 2011. https://www.ted.com/talks/brene_brown_on _vulnerability?language=en. Brown, Lisanne, Kate Macintyre, and Lea Trujillo. 2003. “Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?” AIDS Education and Prevention 15 (1): 49–69. Campbell, Catherine. 2003. “Letting Them Die”: Why HIV/AIDS Prevention Programmes Fail. Bloomington: Indiana University Press. Diener, Ed, and Robert Biswas-Diener. 2008. Happiness: Unlocking the Mysteries of Psychological Wealth. Malden, MA: Wiley-Blackwell. Earnshaw, Valerie A., and Seth C. Kalichman. 2013. “Stigma Experienced by People Living with HIV/AIDS.” In Stigma, Discrimination and Living with

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HIV/AIDS: A Cross-Cultural Perspective, ed. Pranee Liamputtong, 23–38. Doetinchem: Springer Netherlands. Fortenberry, J. Dennis, Mary McFarlane, Amy Bleakley, Sheana Bull, Martin Fishbein, Diane M. Grimley, C. Kevin Malotte, and Bradley P. Stoner. 2002. “Relationships of Stigma and Shame to Gonorrhea and HIV Screening.” American Journal of Public Health 92 (3): 378–381. Fredrickson, Barbara. 2009. Positivity: Top-Notch Research Reveals the Upward Spiral That Will Change Your Life. New York: Three Rivers. Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster. Hamra, Mary, Michael W. Ross, Mark Orrs, and Angelo D’Agostino. 2006. “Relationship Between Expressed HIV/AIDS-Related Stigma and HIVBeliefs/Knowledge and Behaviour in Families of HIV Infected Children in Kenya.” Tropical Medicine & International Health 11 (4): 513–527. Heijnders, Miriam, and Suzanne Van Der Meij. 2006. “The Fight Against Stigma: An Overview of Stigma-Reduction Strategies and Interventions.” Psychology, Health & Medicine 11 (3): 353–363. Holt-Lunstad, Julianne, Timothy B. Smith, Mark Baker, Tyler Harris, and David Stephenson. 2015. “Loneliness and Social Isolation as Risk Factors for Mortality: A Meta-Analytic Review.” Perspectives on Psychological Science 10 (2): 227–237. Karim, Salim Abdool. 2011. “Stigma Impedes AIDS Prevention.” Nature 474 (June): 29–31. Lyubomirsky, Sonja. 2008. The How of Happiness: A New Approach to Getting the Life You Want. New York: Penguin. McPherson, Miller, Lynn Smith-Lovin, and Matthew E. Brashears. 2006. “Social Isolation in America: Changes in Core Discussion Networks over Two Decades.” American Sociological Review 71 (3): 353–375. Nossel, Murray. 1999. The Storytelling Group. Adelaide: Dulwich Centre Journal. Nyblade, Laura, Anne Stangl, Ellen Weiss, and Kim Ashburn. 2009. “Combating HIV Stigma in Health Care Settings: What Works?” Journal of the International AIDS Society 12 (15): 15. Parker, Richard, and Peter Aggleton. 2003. “HIV and AIDS-Related Stigma and Discrimination: A Conceptual Framework and Implications for Action.” Social Science & Medicine 57 (1): 13–24. Patterson, Andrew, and Gerry Veenstra. 2010. “Loneliness and Risk of Mortality: A Longitudinal Investigation in Alameda County, California.” Social Science & Medicine 71 (1): 181–186.

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Piot, Peter. 2001. Statement at UNAIDS World Conference Against Racism, Racial Discrimination, Xenophobia and Related Intolerance. Durban, South Africa, September 4, 2001. Rankin, William W., Sean Brennan, Ellen Schell, Jones Laviwa, and Sally H. Rankin. 2005. “The Stigma of Being HIV-Positive in Africa.” PLOS Medicine 2 (8): e247. Rohde, Nicholas, Conchita D’Ambrosio, Kam Ki Tang, and Prasada Rao. 2015. “Estimating the Mental Health Effects of Social Isolation.” Applied Research in Quality of Life (May): 1–17. Yebei, Violet N., J. Dennis Fortenberry, and David O. Ayukua. 2008. “Felt Stigma Among People Living with HIV/AIDS in Rural and Urban Kenya.” African Health Sciences 8 (2): 97–102.

10

I Like Dancing and Singing and Prancing and Flinging USIN G POETRY IN D EM ENTIA CARE



mary hu m e

And this our life, exempt from public haunt, Finds tongues in trees, books in the running brooks, Sermons in stones, and good in everything. w i l l i a m s h a k e s p e a r e , As You Like It

w h e n i wa s g r o w i n g u p, in the 1960s and 1970s, my uncle, Father Bob Hume, a Roman Catholic priest, would often bring to my parents’ home people he knew from his ministry who were facing challenges. A few were between jobs and struggling financially. Others suffered from mental illness. Although they were diverse, they shared a lack of support from communities. It was not unusual to have people staying with us until they could recover and move on. Others came and went, and their relationship with my family lasted for years, sometimes to the chagrin of my parents and five older siblings. Others likely characterized these persons as “marginal,” but I didn’t see anything amiss about them. Their stories and the places they’d been fascinated me; their lives were utterly unlike anything I had experienced. Until I was an adult, I didn’t realize that many outside of my family considered that living in a house with strangers constantly coming and going was an odd way for a child to grow up. Perhaps my interest and curiosity in the hearing and telling of stories, as well as the expectation to care for others, springs from this unusual upbringing. Although I didn’t know it at the time, the strangers passing through my house taught me about being interdependent, and the value of listening deeply.

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Many years later, my uncle was diagnosed with Alzheimer’s disease and, until his death, my family and I cared for him. By then, I had been working for eleven years as a social worker in a community-based agency serving older adults and their caregivers. One of the positions I held was leading a social adult day program for persons with dementia. The group met twice per week for several hours at a time to engage in social and recreational activities. I look back with great affection for the clients I met and the work we did together. I learned much from them. With a personal conviction that all people, regardless of their state of mind, retain a capacity for creative expression, I discovered that I could use poetry with the group. deme n t i a and th e o ng o i ng ne e d fo r c o n n e c t io n

I heard from caregivers—an almost constant refrain—that people with dementia feel cut off from the world they once knew so well. Dementia makes it hard for them to stay connected to their communities. Kitwood (1993, 1997) speaks about dementia being debilitating in a society that values knowledge and economic productivity. In this culture, communities often exclude, and thereby oppress, people with dementia because they are not economically productive. He asks us to consider a different framework. Might we, he submits, as a society, come to value creative expression just as much as knowledge and economic productivity? If so, can we then value people with dementia for the ways they continue to express themselves creatively, and include them in our communities? Post (2000) offers a different way of looking at the paradigm shift that I experienced as a result of using poetry in working with people with dementia. He replaces Descartes’s famous “Cogito ergo sum” (I think, therefore I am) with “I will, feel, and relate while disconnected by forgetfulness from my former self, but still, I am” (5). This restatement shifts the location of the self from pure thinking to creative expression of feelings in relationships. For Post, deeply forgetful people, as he calls them, are still valuable selves and participants in community. With these thoughts in mind, I chose activities through which people with dementia and those assisting them could build a community that values creative expression and emotional interaction over the possession of knowledge as a commodity, and economic productivity.

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This chapter focuses on the narrative technique of creating a list poem with a group of older adults with dementia. It includes a discussion of the ethical principle of recognizing the humanity of all people, regardless of their cognitive abilities. We in the social work profession can use the transformative power of poetry to restore hope to those affected by dementia, to affirm that their lives, while changed, are not without meaning, and to break down barriers between workers and clients. In conducting the group, I noticed that clients especially enjoyed activities centered on the creative arts. For example, I regularly included a singalong session. I counted myself lucky to have a faithful volunteer who played the keyboard and helped to lead this activity. The clients were always enthusiastic about it. I wondered what other kinds of programming would foster their creative self-expression. t h e g r ou p as s e m b le s

Our group included ten older adults—six women and four men. Several had diagnoses of probable Alzheimer’s disease, and most of the rest had either vascular or Parkinson’s-related dementia. Most were in the middle stage of their dementia. They ranged in age from sixty-five to ninety. I was fortunate to have a dedicated cadre of volunteers. A few were women who were retired, peers to our group members with respect to age. Another group of volunteers were middle-age male and female professionals who had prior experience caregiving for a relative with dementia. They were eager to make a contribution and to stay connected with the community of people affected by dementia. I also had a lively group of young adults with developmental disabilities, from a local social service agency. Most of them resided in group homes; the agency serving them had approached me and asked me about volunteer opportunities for them. These volunteers brought a rich intergenerational component to our group. Finally, the clients’ aides helped carry out the activities. As the only paid staff person, I relied on all of the volunteers and the aides to help me lead the program activities.

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My late husband, the poet Walter James Miller, used to visit the program and read his own and others’ poems. On one such visit, he started to read a well-known poem, “The Arrow and the Song,” by Henry Wadsworth Longfellow: I shot an arrow into the air, It fell to earth, I knew not where; For, so swiftly it flew, the sight Could not follow it in its flight. I breathed a song into the air, It fell to earth, I knew not where; For who has sight so keen and strong, That it can follow the flight of song? Long, long afterward, in an oak I found the arrow, still unbroke; And the song, from beginning to end, I found again in the heart of a friend.

To my delight and wonder, after he spoke the opening lines, one of the clients began to recite along with him, not missing a single word. A hush fell over the room. When they had finished, several of the clients, with smiles on their faces, talked about how they had recognized the poem and had learned it in their youth. Walter went on to read other poems. When he was finished, the clients shared their associations. A poem about World War II reminded a client, himself a veteran, about his wartime experiences. He talked about where he had served in Europe, memories of his buddies, and what had happened to them. Time opened up, and I couldn’t help falling in. The poetry clearly engaged the group. In no time, they were eagerly listening to one another. The poems were like windows through which they looked into their pasts and discovered memories from which discussion flowed. I came to understand more of who they were and what remained important to them.

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Shortly after one of Walter’s visits to the program, he said to me, “Why not try a list poem with the group?” According to Padgett (1987), a list poem is a very old form. Also called a catalog, it is a collection of things or occurrences, rhymed or unrhymed. The form is adaptable, suitable even for novices (like me) to use, and the content stems from personal, lived experience. The purpose of a list poem is primarily to describe. For example, Padgett mentions that the book of Genesis can be viewed as a list poem that traces the ancestry of Adam’s family. He goes on to say that many poets, Walt Whitman and Allen Ginsburg among them, have employed this form, respectively, in sections of Leaves of Grass and “Howl.” My first task was to think of a prompt, an open-ended phrase that would stimulate each member of the group to respond. Usually, the poetry exercise was the second activity of the day, timed before lunch. The volunteers and I usually started by greeting the clients, seating them, and serving them refreshments. We often helped them to stir up a conversation with their tablemates. With music playing in the background, we’d progress to arts and crafts—puzzles, drawing, coloring books, and sewing—while keeping a steady stream of chatter going and attending to whatever was on the minds of the clients. After arts and crafts, we’d do poetry. With pen and paper in hand, I had everyone—clients, their aides, and the volunteers—sit in the center of the room, in a circle, facing one another. I invited the group to co-construct a poem. I chose the prompt, “I like . . .” Turning to each person and repeating the prompt, I waited for him or her to respond. Some members easily sang out replies (for example, “I like warm summer days”), while others needed more coaching. For the latter, the question “How do you like to have fun?” usually generated an answer. We’d then reflect back what we’d heard, to make certain we were listening well. For example, I asked one client, “So, you like your grandson?” She affirmed, “Yes, and he’s so handsome!” Appreciative laughter erupted from the group. Over time, I tried out a number of prompts. I found “I like . . .” to be the most successful, perhaps because it evoked pleasant memories and was a way to articulate interior dialogues. At the same time, it focused participants on the here and now and conjured up their hopes, wishes, and desires. I

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noticed that some replies were mainly about important relationships. Others were about pleasurable activities. Some intertwined the two. Instead of the responses being separate declarations, a conversation, rich with affective expression, took shape. My husband helped me to put the finishing touches on the resulting poem. Knowing my fondness for gerunds (as they highlight the process), he played with many of the responses so as to bake these in. Later, I read the poem back to the group. By the smiles on their faces, I knew they liked it. Everyone in the group received a copy of the poem. I also distributed it to the families of the group members, to agency staff, and to our funder, the New York City Department for the Aging. Group Poem fro m t he Bay Ridge Alzheimer’s S erv i c e C en t er I like warm summer days when I can laze I like to be with my family, swimming happily I like the smell of lilacs in May time; for me that’s the best playtime I like to bake crullers that are bestsellers I like to throw confetti when they’re serving spaghetti I like being with my friends: I hate it when friend-time ends I like to bowl; that’s my goal I like lobsters that look like mobsters I like to eat an apple, a pear, or a peach; I like to have one of each I like crabs and any kind of crabapples; Best of all I like to grab apples I like to come on Mondays and be with all of my friends; I hate it when Monday ends I like my grandson he’s so handsome I like flowers in the springtime; Especially clinging vines I like working but not while other people are shirking I like to have money and be my honey I like dancing and singing and prancing and flinging

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I read the poem to the group. Some clients, with great pride, recognized their own contributions and shouted them out again. I was having as much fun as they were. The swirl of it caught me up, and I made an unexpected discovery: I was not in charge. I was no longer the group leader. I didn’t feel compelled to have the answers, possess the knowledge or skills, or even to be their guide. I just had to be present. This shift was transforming. Previously, in thinking about this exercise, I had assumed that there was a “right” way to craft a poem. I had no idea of what to do. Surrey (1997), reflecting on her experiences as a therapist, stated that, with time, she began to develop more trust in the process of working with her patients and was much less focused on the mechanics of what she was doing and more on the relationship itself. She also credited a deeper self-awareness with helping her to acknowledge the anxiety that this way of working with clients stirs up. I came to see my anxiety as information about what was going on in the group. I began to relax and was able to let go of the reins; I found myself among a group of peers. None of us were poets, yet each of us worked together and kept ourselves wide open to the process. We co-constructed a poem made up of many ingredients. Like my group members, I, too, was experimenting with something unknown. I felt deeply connected to them, grateful for not having to do this activity alone. The barrier between us collapsed. All of us were students engaged in sharing our joys, celebrating our commonalities, appreciating our differences, and acknowledging our losses. The making of the poem tethered us to one another and deepened our sense of community. As Kaplan (1997) writes, the idea of difference between others and us can foster a way for us to more deeply understand ourselves as well as others, and to grow through connection. fr o m co nne c ti o n to c o m m u ni ty

Prior to starting this new job, I knew I needed to do some homework. So I visited several dementia-specific social adult day programs to observe, study, and learn what was then very new to me. Shadowing seasoned staff and watching them as they conducted activities with clients, I soaked up as much information as I could. Among the activities were physical exercises such as stretching and toning, dancing, ball playing, and bowling. I have a distinct memory of doing the Electric Slide with clients. Each time, with-

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out fail, I was the only one to turn the wrong way and collide with my nearest neighbor. Did I feel clumsy and foolish! But everyone was so gracious. There also was time for arts and crafts, card games, bingo, and, one of my favorite activities, a sing-along session. As Ruthirakuhan et al. (2012) note, it is not uncommon for Alzheimer’s patients to experience their illness as isolating them from others, resulting in anxiety, depression, and diminished self-esteem. Their review of the literature on the effects of socialization on patients with Alzheimer’s disease leads them to conclude that, when “surrounding healthy individuals” value Alzheimer’s patients’ “normal” participation in families and communities, these patients’ self-esteem, eating habits, exercise regimes, and engagement in “cognitively and socially stimulating activities” increased; their overall quality of life improved (1). These fi ndings support the approach I took in working with clients in the social adult day program, especially in the poetry activity. I sought to build a community in which everyone—clients, volunteers, and paid professionals—valued and benefited from one another’s participation. This community-building model differs from the therapeutic model that governs traditional social adult day programs. The therapeutic model assumes the differentiation between professionals who provide services and clients who are in need of services. I knew that I didn’t want to focus on the clients’ deficits. Also, I was concerned about finding ways to encourage and showcase their strengths. The poetry activity was a community-building exercise (as well as an experiment) with the clients. I found that, by partnering with both clients and staff, everyone’s participation was in turn valued and affirmed. This, then, became a real community and not a provided one. Doing the poetry activity and building community with the clients recalled my childhood experiences of getting to know strangers in my home. The poet Galway Kinnell once said that “poetry is someone standing up, so to speak, and saying, with as little concealment as possible, what it is for him or her to be on earth at this moment” (quoted in Lewis 2014). Poetry and social work both bear witness to human experience. The narrative device of the list poem gave me entry into understanding how the group members had lived their lives and what was still important to them. Their dementia did not matter. The poetry was a tool we used to assuage the alienation so often felt by all of us.

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The exercise provided us with an opportunity to be creative, innovative, and, most of all, playful. Although I lean toward introspection, contemplation, and quietude, for a few hours of the workday I flirted with my inner extrovert. Like my group members, I could be a combination of many things, ever changing; my identity was malleable. After the poetry exercise, I noticed that the clients seemed pleased with themselves and also more responsive to one another. The poetry helped me to attend to what was already happening in the room and to not interfere. Even though the clients had dementia, they were still people able to help each other in various ways. A client found the right page in our songbook for her neighbor during sing-along. A client escorted another client back to his seat at the table after group exercise. A client gave words of encouragement to another client who anxiously searched the room for her long-dead mother. Goodwill had been present all along. These interactions came forth organically; I or other staff members did not need to intervene in order to make something positive happen. The poetry taught me to trust the group. Dr. Bill Thomas, the creator of the Eden Alternative, proposes that nursing homes should be more like gardens and less like hospitals. They should encourage residents’ autonomy. He observes that residents who care for animals and plants have a stronger sense of purpose, feel more fully alive, and are more active participants in their communities (Walker 2016). An essay by Jamison (2014) on the changing social role of poetry brought my attention to John Keats’s notion of negative capability, “when man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.” Although, when I started the poetry activity, I felt completely inadequate to the task before me (and, in the ensuing years, this was not to be a singular occurrence), I also had had enough prior experience to know, believe, and put my faith in the goodness of staying open to whatever happened, no matter how unsettling or painful it was. With this new understanding of negative capability in mind, and the group as my compass, I placed my trust in whatever came next. In The Complexity of Connection, Jordan and Walker (2004, 3) write about how real relationships are based on “tolerating uncertainty, complexity, and the inevitable vulnerability involved in real change.” In the same book, Jordan (2004a, 43) also submits, “We can replace an ethic of individualism with an ethic of mutuality.” Likewise, I have come to appreciate, both in my direct practice with older adults and in staff supervision, what

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Jordan (2004b, 15) calls relational competence, “the capacity to move another person, to effect a change in a relationship, or effect the well-being of all participants in the relationship.” Relational competence helps to build community and decrease isolation. It does not require that anyone be the “expert.” No one was bound up with the pressure to lead an activity, meet a goal, or accomplish a task. We simply had to be present with ourselves and with one another. Creating the poem together increased relational competence. I felt relieved and humbled. Dennis (2005) observes that using poetry in dementia care helps to retrieve language, sensations, memories, and emotions that seem to have been lost. For the person with dementia, the music in poems makes words meaningful again. Even in the face of dementia, creating poems together affirms that life can still have beauty and laughter. CaringKind (formerly known as Alzheimer’s Association, New York City Chapter) sponsors a program called Connect 2 Culture, a cultural arts program for people with dementia and their caregivers. Offerings include museum programs, in which specific dates and times are set aside to provide a way for participants to explore works of art together in a guided setting. Discussion, art-making workshops, and enjoying the company of others are just some of the highlights. Other social events offered through this initiative center on singing and dancing. Similarly, the novelist Don DeLillo, with Dr. Alan Dienstag, created a writing program for people in the early stages of Alzheimer’s disease. The hope, said DeLillo, in having the participants write a brief narrative in response to a prompt every few weeks, was “to give pleasure, to help them escape their loneliness, and eventually, perhaps, to help them understand what’s happening to them” (quoted in Gardner 1997, 2). These initiatives are about providing support, immersing those with dementia in the creative arts, and keeping them integrated in their communities. con cl usi o n

When people with dementia co-construct poems, they move from being isolated and marginalized to being full participants in community. The list poem described here is easy to replicate. My own caregiving experiences, both professional and personal, have shown me that people at the end of their life cycles still have much living to do. The narrative power of these

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kinds of poems takes all of us by surprise and to places not on our maps. When we, as social workers, co-create poems with our clients, we discover more about each other and ourselves. Heyward (1993) notes that relational exchanges and experiences, with an emphasis on highlighting our commonalities as well as our differences, transform us. As she also observes, our compassion for others and our ethics need to be steeped in and shaped by ongoing relational processes. I would add: none of us know our “due date.” Why not, then, regardless of the state of our mental faculties, accompany each other and create ways to continue to find joy? references

Dennis, Ruth. 2005. “With Respect: Why Caregiving Matters.” In Sparking Memories: The Alzheimer’s Poetry Project Anthology, ed. Gary Mex Glazner, 27–29. Santa Fe, NM: Poem Factory. Gardner, Ralph, Jr. 1997. “Writing That Can Strengthen the Fraying Threads of Memory.” New York Times, January 30: 1–4. Heyward, Carter. 1993. When Boundaries Betray Us. Cleveland: Pilgrim Press. Jamison, Leslie. 2014. “Bookends.” New York Times Sunday Book Review, November 23: 43. Jordan, Judith V. 2004a. “Relational Resilience.” In The Complexity of Connection: Writings from the Stone Center’s Jean Baker Miller Institute, ed. Judith V. Jordan, Maureen Walker, and Linda M. Hartling, 28–46. New York: Guilford. ——. 2004b. “Toward Competence and Connection.” In The Complexity of Connection: Writings from the Stone Center’s Jean Baker Miller Institute, ed. Judith V. Jordan, Maureen Walker, and Linda M. Hartling, 11–27. New York: Guilford. Jordan, Judith V., and Maureen Walker. 2004. Introduction to The Complexity of Connection: Writings from the Stone Center’s Jean Baker Miller Institute, ed. Judith V. Jordan, Maureen Walker, and Linda M. Hartling, 1–8. New York: Guilford. Kaplan, Alexandra G. 1997. “How Can a Group of White, Heterosexual, Privileged Women Claim to Speak of ‘Women’s’ Experience?” In Women’s Growth in Diversity: More Writings from the Stone Center, ed. Judith V. Jordan, 32–37. New York: Guilford.

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Kitwood, Tom. 1993. “Towards a Theory of Dementia Care: The Interpersonal Process.” Ageing and Society 13: 51–67. ——. 1997. Dementia Reconsidered: The Person Comes First. London: Open University Press. Lewis, Daniel. 2014. “Galway Kinnell, Plain-Spoken Poet, Is Dead at 87.” New York Times, October 30: A29. Padgett, Ron, ed. 1987. The Teachers & Writers Handbook of Poetic Forms. New York: Teachers & Writers Collaborative. Post, Stephen G. 2000. The Moral Challenge of Alzheimer’s Disease. 2nd ed. Baltimore: Johns Hopkins University Press. Ruthirakuhan, Myuri, Angela C. Luedke, Angela Tam, Ankita Goel, Ayaz Kurji, and Angeles Garcia. 2012. “Use of Physical and Intellectual Activities and Socialization in the Management of Cognitive Decline of Aging and in Dementia: A Review.” Journal of Aging Research 2012: 1–10. Surrey, Janet L. 1997. “What Do You Mean by Mutuality in Therapy?” In Women’s Growth in Diversity, ed. Judith V. Jordan, 42–49. New York: Guilford. Walker, Josh. 2016. “He Broke the Law to Build a Better Nursing Home.” Next Avenue, February 3. http://www.nextavenue.org/he-broke-the-law-to-build-a -better-nursing-home.

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Jesse’s Story A MOT H E R ’S VOIC E—A SOC IAL W ORK J O U R N E Y



h eidi m a nd e l

To everything there is a season, and a time for every purpose under heaven: A time to be born, and a time to die . . . A time to weep, and a time to laugh . . . A time to keep silent, and a time to speak. ecclesiastes 3:1–8

my s tory i wa s i n m y e a r ly t h i r t i e s and newly married when I delivered my firstborn child, a preterm infant with a low Apgar score. A low Apgar score does not provide a specific diagnosis or prognosis, and though I did not ask many questions at that time, I worried. My husband and I had left New York to set down roots in another Northeastern city, which promised opportunity. Along the heartbreaking course of our son’s delayed milestones, we were confronted with an unfortunate number of physicians who were dismissive, patronizing, and uncommunicative. They lacked the very basics in empathy, honesty, and respect. At the time, I was working as a medical social worker in a suburban hospital, but eventually I needed to take a leave of absence due to the care demands of my son. I felt defeated for many years but managed to sustain the hope that, at some future time and place, I would find a path to voice my disappointment with the medical community. I wanted to use my training and commitment to social work values to learn an effective and humanistic way to encourage physicians to express more compassion during the clini-

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cal encounter and to listen with greater sensitivity. This social work journey begins and ends with my personal voice. Many developmental pediatricians and specialists examined our son over the years of his growth and development, yet little was explained to us about what his widening delays meant to his future educational, social, intellectual, and overall independent functioning. We were left to our own devices to accrue, by trial and error, a folder of resources that offered care for our son and support for our family. Sadly, the general pediatricians and developmental specialists we consulted had no knowledge of these resources and could not comment on their potential usefulness. Although appreciative of our carefully assembled inventory, they demonstrated little interest in discussing how these resources could individualize the care for our son and our family. Physicians always looked uncomfortable as they observed and reported on our son’s growth and development—or obvious lack thereof. Surely they had feelings. I surmised from the smiling family photos on their consult walls that most of them were parents, too. Where was the healing connection with our son and us? We were as much of the definition of “patient” as our innocent baby. They stood silently by as we were drowning in grief. I was dismayed that these doctors, with their beautifully framed diplomas attesting to their wealth of training in developmental issues, did not speak directly and honestly to us about what they suspected medically and what they predicted for our family’s future. More importantly, they did not ask us if we had any questions. Their credentials cowed us and we retreated into silence, not uncommon behavior for first-time parents. These physicians, young rising stars, and older, academic professors were unable to communicate, coordinate, or deliver appropriate, high-quality care to our son or to us. We needed an honest bedside manner, accurate information, and access to resources. And those, for the most part, were glaringly absent. o n e exa m p le c ap tu re s m any

A highly regarded up-and-coming pediatric neurologist made a home visit as a courtesy to my physician husband. As he made his way around our living room, I asked myself, Why isn’t he closely observing and interacting with my son? Why does he seem more interested in our furniture design? As our

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second child, a twelve-month-old toddler, scampered around the room, easily navigating chairs, tables, and toys, our son, then twenty-two months, sat with downcast eyes, staring blankly, unable to raise himself to a standing position next to one of the chairs. In a desperate and shaking voice, I summoned my nerve to ask what felt like a provocative question, but one that should have been routinely addressed in the clinical setting, on many previous occasions: “Will my son have mental retardation?” Pejorative and disrespectful as it may sound, I knew that this was, and still is, an accepted medical term used for diagnostic and billing purposes. For parents, however, this term shuts down the aspirations of higher educational achievement, independent living, and a typical life. For parents who ask, this is an issue that must be addressed with the utmost kindness. It is a term that creates fear, guilt, and despair in even the most prepared parents. The esteemed physician looked intently at both my children. He walked toward the front door, speeding up as he got closer, and strained to say, “At least you can see the difference between your daughter and son. I don’t know.” He bolted out. The last sound I heard was a door slamming shut. Whether this was my heart or his car door, I’ll never know. The conversation that should have been ongoing from day one never happened. My story—as a mother and a social worker—influenced my efforts to introduce the concept and process of narrative medicine into a large metropolitan teaching hospital in New York. s o ci a l wo rk trai ni ng

My early professional training validated what I needed to hear most: a core social work value stressed listening to the client (Richmond 1917; Hamilton 1951; Perlman 1957). It was, however, my later training through workshops at Columbia University’s Program in Narrative Medicine that provided me with tools I needed to use personal and professional experiences in new ways. The Program in Narrative Medicine trains facilitators to take leadership roles in health care systems across the country. The guiding principles of narrative medicine workshops are to foster attention, representation, and affiliation. Close reading of text—written, visual, and oral—allows readers to enter into the lived experiences of others and enhances attention. Representation is realized through reflective writing in response to a prompt re-

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lated to the text, unlocking and transforming the clinician’s inner response to a shared experience. Affi liation is the desired outcome of a deepened connection between oneself and others. The desired outcomes of participation in narrative medicine workshops include narrative competencies such as close reading and deep listening to better understand what is communicated; appreciation of other points of view, including that of patients, families, and colleagues; representation of observations, conversations, and team action plans in medical records, parallel charts, and other forms of communication; and reflection on the professional caregiver’s own experience and practice (Charon 2001). Most recently, I discovered a social work textbook that discusses narrative theory as a strengths-based perspective that values the centrality of a client’s story (Birkenmaier, Berg-Weger, and Dewees 2014). As a hospital social worker, I wanted to introduce narrative medicine to an environment of interdependent, multiple, and progressively complex systems of power and connection that function transactionally and collaboratively to deliver care to patients and families. Basing my work on a systems theory perspective (Bronfenbrenner 1979), I hoped that my intervention could affect the whole in gradual waves of change. cr eat i on o f a g ro u p

Here was my chance to change the physician culture that I had so sorely experienced. I was encouraged to think that a systems intervention in one part of the hospital could have an effect on the whole institution. I expected that my proposal for a narrative medicine workshop for physicians in training at a metropolitan New York hospital would take hold and be approved. After all, I had the support of a pivotal educator in the health system, the director of faculty development at the school of medicine. She was a graduate of a master’s program in narrative medicine and strongly believed that a curriculum in narrative was essential for medical student education and resident competency. She had won the approval of the medical school to integrate narrative concepts and methods into faculty and medical student education. With the backing of my most significant ally, I thought my proposal would be welcomed. At our initial meeting, we discussed how to introduce the workshops and decided that a resident writing workshop was a reasonable goal. Over

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the course of several weeks, I introduced myself to the directors of the residency programs in medicine, psychiatry, orthopedics, radiology, pathology, ob-gyn, pediatrics, and community health and wellness. In addition, I submitted written proposals to the attending physicians of the outpatient infusion center in which I was a social work consultant. I encountered serious resistance in my attempts to rally the residency directors around the workshop proposal. I explained that the workshop would offer the residents a safe space in which to reflect on and share the frustrations and challenges of patient care. Although they acknowledged that burnout and cynicism were growing in their student medical community, they countered with the weight of their administrative responsibilities, budget cuts, time constraints due to patient volume, documentation needs, and the competing political agendas topping their to-do lists. It seemed to me that physicians were suffering from a distinct malaise, and that their ability to experience the clinical encounter, with the joy of discovery and sufficient attention given to patient needs, was compromised. My plan of holding the first narrative medicine workshop for residents was nixed. t h e n ur s e s ’ wo rk s h o p

The nurse manager of the outpatient infusion center where I worked was receptive. She accepted the workshop as an in-service trial event. The nurses in the unit who signed up—though encumbered with the same disincentives as the doctors—were enthusiastic. The workshops promised them “something new and fresh.” They commented to me, even before the group began, about how much they valued their teamwork and camaraderie. And the cohesion of the five nurses, who gave their time and energy with such generosity, proved successful. The nurses were female and culturally diverse. The Philippines, India, the Caribbean Islands, and the United States were represented. They worked fulltime giving infusions to patients with malignant disease, inflammatory bowel illness, and anemic conditions, who came to the hospital daily to receive cycles of treatments. The nurses and I were team members at a site where my role as a social worker was to supportively counsel patients and their families. The nurses had voluntarily signed up for this narrative workshop at the December holiday staff dinner, where they each brought home-cooked dishes. The assortment of ethnic foods, personally prepared and lovingly

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laid out on the conference table, seemed like a natural backdrop to introduce a narrative experience, for each food contribution came with a detailed story about its preparation, ingredients, and origin. Many of the nurses took photographs of the table covered with their savory dishes, to admire and reflect. Through their day-to-day clinical exposure to patients and families, they were acutely sensitive to much more than stories about food. They listened to and absorbed daily accounts of illness, heartbreak, loss, grief, and healing from patients and families. Their concern and empathy for suffering was tested every day. Over lunch, in this same conference room, at the same table, they shared their own vignettes of similar issues. I instinctively knew these wonderful clinicians would give a welcome reception to the narrative group. I hoped they would find it meaningful. I explained that the workshop would be a protected and confidential place and time to read, reflect, and write stories in response to prompts. The nurses agreed. The nurses fi led in after their work shift and took seats around the oval table in the small conference room that doubled as the staff lunch room. Although the outside air was warm on this mid-May evening, the air inside the conference room felt chilly. It had diff used from the cold and institutional spaces of the hospital. I closed the door for privacy. For this first narrative medicine workshop, I chose a text that tells of a mother and her infant daughter. The story “Aunt Jose,” by Ángeles Mastretta, comes from her book Women with Big Eyes (2003). The story is a one-page tale of a woman who gives birth to an infant girl with “eyes like two moons.” The mother and infant bond with love and possibility. Then fate brings grave illness to the child and the situation turns dire. The child is hospitalized and administered all the appropriate tubes and needles to keep her alive. Neither the mother’s prayers nor her curses at her fate seem to alter the course of the illness. Finally, and intuitively, the mother finds her own way to help her daughter survive. She talks directly to the infant, spinning tales about female ancestors, in the hope that these stories will have the healing power to convince her child to “hold on to life.” Some of her stories are remembered, some invented, and some assumed. Eventually, the child regains her health. Her mother credits these historical narratives of “other women with big eyes” with healing her daughter. For the mother, the stories, not medical science, hold the ability to heal. This text is rich in metaphor, depth, and beautiful writing.

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Two nurses read the story aloud. Group participants attended closely, reflecting on subjective meanings and themes. They felt that God was primarily instrumental in saving the life of the infant. They were in consensus in their conviction that the medical community could do “just so much.” They believed that the father of the child was supportive of his wife and supported her strength and her faith in the doctors and in God. They were impressed with the strength of the bond between the mother and her infant daughter, when “she looked into her big eyes.” All of the nurses were mothers, four with daughters and one with two sons. I chose an open-ended prompt: “Write about a grandmother, greatgrandmother, or other female ancestor.” Their words about family bonds and personal experience represented facets of their lives that took courage to share, thus building a community with one another. One nurse wrote about five generations of females in her family—an engaging story about her great-grandmother, grandmother, mother, daughter, and granddaughter. The scene described a granddaughter toddler who crept into the lap of the eldest grandmother, whom she was just meeting for the first time. There was a bond, humor, and love felt among all present at the family gathering. Another nurse shared a story that happened in India in the family home’s back garden, which was filled with mango trees. This nurse remembered an entire afternoon of picking and eating the fruit from the trees, with her many siblings, against the orders of parents and grandparents. Other nurses shared stories of the foods their grandmothers made from scratch and, with loving expertise, taught them to make. These personal stories then segued into how they felt about their work. They expressed the belief that it is beneficial to allow themselves the feeling of exquisite sadness that comes when a patient does not respond to treatment and dies. They expected a professional and personal recovery period from the stress. They said that they can forgive themselves when they know that they did the best job they could for the patient, which, they articulated, is a significant healing aspect of their work. The nurses reported that the workshop gave them a feeling of closeness and recovery from stress, which they wished to continue in another session. The workshop felt like a success. It followed the structure of close reading and reflective writing in the shadow of a text and confirmed the core values of narrative training—attention, representation, and affiliation. I came away

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from the triumph of the nurses’ narrative workshop with renewed confidence and motivation to try again with the residents. t h e r e s i d e nts ’ wo rk s h o p

This time, I met in person with the residency directors to gain their acceptance. Because I bolstered my request with reference to the commitment of my educator colleague in narrative medicine, they were hard-pressed to say no. However, they did emphasize that the workshop would be voluntary, because of the time constraints imposed by residents’ workloads. I assured the directors that I appreciated the responsibilities and pressures the residents faced. I reiterated the idea that the workshop would be an opportunity to reduce stress and promote bonding. I also emphasized that the workshop was not a support group. It was not designed to expose weakness but rather to share strengths of self-reflection and representation, in language that defines the intense feelings brought out in doctor–patient relationships. Despite the ability of the best clinicians to compartmentalize their personal feelings about patients, as they move from one to the other, their feelings do not dissipate. Instead, they sit in the deepest recesses of the mind and spirit and, insidiously, can contribute to cynicism, demoralization, and burnout. From conversations with my allies, I knew that there had been a lot of talk behind the scenes. Finally, however, the directors agreed to a voluntary “pilot” group, and they advised me to announce the new narrative workshop at the residents’ spring talent show. As I took the microphone at this event and introduced the workshop, I noticed many eager expressions in the audience of young residents. While I passed around the sign-up sheet, one resident approached me for more details. Over coffee one afternoon, some days later, she told me her personal story about what had motivated her to become a doctor. This dialogue, and our mutual commitment to advocate for greater empathy and compassion in the doctor–patient relationship, led her to take a leadership role in the formation of the first resident workshop, late that summer. In addition, the manager of the department of patient services, who worked closely with the nurse manager of the unit that welcomed my nurses’ group, became an ally as well. He had learned about narrative methods in graduate school. As a result of his exposure and

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respect, he took responsibility for setting up the time slots and room assignment for the workshop. After many reminder e-mails, I finally held two resident workshops over the summer. Attendance was meager: five residents in each section, from the departments of pathology, medicine, orthopedics, and podiatry. I was disappointed that no one represented psychiatry. The first poem I chose, “The Ship Pounding” by Donald Hall, uses metaphor—the “ship” is a hospital. The poem’s narrator describes his relationship with his wife, a seriously ill patient, as he sits with her and absorbs the hospital environment. The other poem, Dannie Abse’s “X-Ray,” portrays a physician, the narrator, who shares his pain at viewing his mother’s X-ray and reading a dismal prognosis. The residents were well within their comfort zones while interpreting and analyzing the language, tone, form, and structure of the poems. Then the emotional floodgates opened. One participant shared a case of a patient with terminal metastatic lung cancer. The discussion of the poem triggered her awareness of her own mother’s good health in the context of the pain of the patient’s daughter upon hearing the prognosis. The barometer of compassion and empathy rose among the residents. A married resident related his vulnerability—despite his medical training—when confronted with illness experienced by his spouse. The residents risked sharing their stories and seemed to have a greater appreciation of the power of self-reflection to enhance bonds as team members, strengthen compassion, and raise the quality of listening to patients. The personal and professional can complement each other. t h e va l u e o f narrati ve m e d i c i ne

From a systems theory perspective, the proverbial drop in the bucket created ripples of positive energy throughout the hospital system. Whether this will lead to the formation of future residents’ and nurses’ workshops is still to be determined. We do not know whether the nurse and resident workshops translated into better patient care. However, as the facilitator, I did come away with the distinct conviction that those who attended gained a deeper understanding of the “patient’s story” and a greater commitment to active listening. As a social worker, I was an agent of change. Using an

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ecological approach, I was instrumental in initiating and integrating narrative medicine workshops into an urban hospital culture. Narrative medicine, through its methods of close reading and reflective writing, promises to teach health care providers how to listen more attentively and to reflect on their own experiences. Doctors bring their own lens to the treatment room. Gender, culture, socioeconomic influences, personal and familial challenges with illness, life experiences, and spiritual and religious beliefs all are variables that interplay between physician and patient. An entire constellation of similarities and differences coexist. It is the patient’s narrative, however, that unites the humanity of their shared mission. Understanding the power of narrative in the hospital setting can establish a culture of teamwork and hope for compassionate care. Health care clinicians witness firsthand the stories of illness and injury. These stories voice a patient’s and a family’s suffering. The narrative is the point of entry as it unfolds. The medical social worker is an integral member of the clinical team. He or she can contribute invaluable insights to the process of assessment and management. Facilitating a narrative medicine workshop is one means to restore the spirit. These workshops can be developed in skilled nursing homes, rehabilitation units, assisted living facilities, or hospice and palliative care programs, among others. Taking a leadership role, and utilizing a systems perspective, the social work clinician can successfully bring narrative to a health care environment. Upon reflection, thirty years later, I speculate about what the detached physicians I encountered were thinking: but for the random throw of the dice, my son could have been one of their sons. It explains but does not excuse remoteness. I know for certain that my commitment to my son and family, as well as my dedication to social work, led me on this extended and challenging personal and professional journey that has traversed two cities. I feel fortunate to have found my voice through narrative medicine. And I feel grateful to have the opportunity to tell Jesse’s story to the medical community and to anxious parents who need a listening ear. ep i lo g u e

My son is now thirty-five and thriving. He graduated high school in the company of his proud family. Eventually, he moved to a group home

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and now works successfully for a cough drop company. He takes full advantage of the generous sports opportunities of Special Olympics and has launched a full and independent social and spiritual life. A n I m agi n ed D i a l o gu e w i t h D o c to r s Doctor, thank you for taking the time to visit us at home. My husband and I are quite concerned about the fact that Jesse is not walking and not reaching the milestones in the appropriate time periods. In fact, we are noticing that the gap between milestones is increasing. d o c t o r As Jesse’s parents, what is your understanding of what is going on? fat h e r We believe there is something related to his brain development. We are anxious and fearful that this will mean that he will ultimately be mentally retarded. d o c t o r I hear your distress. I want to assure you that your question is one that I know is so difficult to ask, because it implies a life of compromise. I promise that this will be one of many conversations we will have ongoing, to answer that question. Together we will plan for the needs of your family and for Jesse. I am committed to understanding the reason for your child’s atypical developmental issues. It must be painful to witness the comparison with your other child’s typical development. I share that pain, as I have children, too. As a specialist in child development, I am feeling at a loss myself to give you an answer. I know you are feeling sadness and confusion. Although I cannot “fi x” what we see, I want to follow Jesse’s development closely, with the goal of identifying resources he can use to reach his potential— like ancillary therapeutic modalities and educational programs. What other ways can I be of help to you and both your children? Jesse may be the reason I came over, but your family deserves my complete attention. m o t h e r Doctor, we want the best for our children, as all parents do. We want them to learn, have friends, enjoy life, take care of themselves, work, and live independently. We want them to have self-respect and a sense of identity and autonomy. We do not know what the future will bring for Jesse. We do not know what hope looks like for him at this time. We appreciate your honesty that you do not know, either, but intend to stay the course with us. We are reassured that you have heard our story and pledge to continue to help us with those goals, through ongoing and honest conversations, for our difficult road ahead. mother

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references

Birkenmaier, Julie, Marla Berg-Weger, and Martha P. Dewees. 2014. The Practice of Generalist Social Work. 3rd ed. London: Taylor & Francis. Bronfenbrenner, Urie. 1979. The Ecology of Human Development: Experiments by Nature and Design. Cambridge, MA: Harvard University Press. Charon, Rita. 2001. “Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust.” JAMA 286 (15): 1897–1902. Hamilton, Gordon. 1951. Theory and Practice of Social Case Work. 2nd ed. New York: Columbia University Press. Mastretta, Ángeles. 2003. Women with Big Eyes. Trans. Amy Schildhouse Greenberg. New York: Riverhead. Perlman, Helen Harris. 1957. Social Casework: A Problem-Solving Process. Chicago: University of Chicago Press. Richmond, Mary. 1917. Social Diagnosis. New York: Russell Sage Foundation.

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With Every Story We Rise NARRATIVE MEANS TO SOCIAL JUSTICE ENDS



n or a m c c a rt h y a nd r ac h e l b lus tai n

I don’t try to fool myself that the stories of individuals are themselves arguments. I just believe that better arguments, maybe even better policies, get formulated when we know more about ordinary lives. k at h e r i n e b o o , Behind the Beautiful Forevers

understands about your story?” “Nothing.” “You’re afraid to tell her? Or you think she doesn’t want to know?” “Both.” Parents with children in foster care often feel that the child welfare system has intruded into every private area of their life but has not fundamentally understood their story. Investigators arrive at their doors in the middle of the night and take their children into another room to answer questions, lifting their shirts to check for bruises. They look in the refrigerator and cabinets. They ask detailed questions about the family’s most shameful moments. The vast majority of investigations do not result in removal. In New York City, approximately 55,000 families are investigated each year, with only about 4,000 children entering foster care. Another 18,000 get “preventive services” to keep children safe at home. Nationally, more than 400,000 children are in foster care. In many poor neighborhoods, nearly everyone knows someone who was in foster care or had their kids removed, and the odds of having your child taken feel higher. “ w h at d o yo u t h i n k yo u r w o r k e r

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In child welfare, it’s considered either difficult to get parents to tell their stories or dangerous to let them. Parents stay silent about the roots of family crises because of fear that their personal information will be used against them and because of family and community proscriptions against “airing your dirty laundry.” Parent attorneys also frequently advise their clients not to speak; in the adversarial court process, the less the “system” knows about a parent, the better. Yet it’s crucial that child welfare professionals better understand the parents and communities they serve, and parents’ desire to be understood remains powerful. Parents have absorbed pervasive images of parents in the especially brutal child welfare cases covered by the media. They want their strengths, their efforts to care for and protect their children, and the special circumstances that led to the family’s crisis or child’s removal to be recognized. Rise is a nonprofit that trains child welfare–affected parents to write about their experiences, in order to develop a more nuanced individual and collective story of these parents. Founded in 2005, Rise runs writing workshops for parents, publishes parent stories in a print and online magazine reaching twenty thousand readers nationwide, trains parents to speak at professional forums and to participate in policymaking, and works with child welfare agencies to use parent stories in parent supports and in staff training. Rise’s goals are to provide information and guidance to individual parents so they can more effectively advocate for themselves, and to deepen the understanding of parents’ life histories and child welfare experiences so that child welfare can better serve parents and children. We create opportunities for child welfare professionals to learn about, from, and with parents in order to become more responsive to the families and communities they serve. This chapter focuses on our writing groups, the most directly therapeutic aspect of our work. Our parents’ individual stories, developed through a painstaking draft process, are Rise’s foundation in challenging onedimensional images of who these parents are and can be. en t er i n g th e s ys te m : th e s h atter in g o f p e r s o nal narrati ve s

In general, parents whose children enter foster care often grew up, themselves, in painful circumstances. In New York City, where Rise is based,

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most of these parents are poor, isolated single mothers of color living in distressed neighborhoods. Recent research on trauma screenings of mothers in New York City with children in foster care found that 54 percent met the criteria for probable posttraumatic stress disorder. Some estimates suggest that up to 40 percent of mothers with children in foster care grew up in foster care themselves. Parents who come to the attention of the child welfare system often have demonstrated incredible survival skills to provide for themselves and their children, despite serious emotional and material obstacles. As many parents have described in Rise, their resourcefulness and determination to change family patterns has often kept them and their children safe for many years. At the same time, breaking negative family patterns can be extremely difficult. Many of these parents faced threats in childhood that they were powerless to control and developed ways of coping—dissociating, numbing pain with drinking or drugs, flying into a rage—that in the short term were useful ways to manage abuse they could not escape. In adulthood, at times when stress escalates or parents feel under threat once again, these same ways of coping can kick in and put children at risk. Child welfare often enters parents’ lives when one crisis has led to another. Story after story in Rise has documented family crises precipitated by the loss of spouse or partner; a helpful family member becoming too frail to keep helping out; a job loss or housing loss; a traumatic incident, such as sexual assault; or a new developmental stage in a child with mental health problems. Generational repetition of family patterns is typical for all parents. As Fraiberg, Adelson, and Shapiro (1975) describe in “Ghosts in the Nursery,” family patterns seem to live in the body and play out unconsciously (“I am sounding just like my mother”). For parents with very painful family histories, however, those ghosts can be terrifying. As one mother wrote in Rise, “Going into adulthood I prayed and promised myself that I wouldn’t continue the cycle. But the problems I wanted to run from consumed me.” When child welfare gets involved, the parent’s story of what has happened in her family life is often not elicited or is dismissed outright. In some cases, the story parents are telling themselves is incomplete. They are not recognizing the effect of their actions on their child. Other times, if child welfare professionals listened more closely to the parent, recognizing

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her efforts and strengths and coming to understand a much fuller story, they could more effectively join with the parent as a partner in resolving a family crisis. Too often, though, a caseworker’s or a judge’s incomplete or problem-focused story of the parent comes to seem like who the parent is. In that sense, removal is traumatic not only because it’s terrifying and because of the profound loss of connection that it causes parents and children, but also because it shatters the meaning a parent has made of her life. The parent is left with literally no story. She must comb through her story to find out what is real and she can keep and what was false and must be rethought. A parent’s task moving toward and following reunion is extraordinarily complicated: to develop a coherent story of her life with her child that accurately accounts for the child’s removal without swamping the parent in overwhelming guilt, shame, or rage. cr eat i n g s af e s pac e s f o r re f le ct io n a n d s el f- de ve lo p m e nt

Rise’s writing workshops provide parents with a safe place to reflect on their experiences and develop coherent, complex, believable narratives of their child welfare and life experiences. Our process draws on research around the therapeutic benefit of making an experience into a story, including the process of challenging and correcting that story. Research by Pennebaker and Seagal (1999) and others has established that writing in depth about a difficult experience can ease the burden of that experience. Multiple therapies focus on constructing a coherent narrative from an inchoate experience, particularly those related to treatment of posttraumatic stress disorder, which paralyzes memory making, activates the fear response, and interferes with “reflective functioning,” a stance of wondering that is the driver of secure attachment. Narrative therapy as well as cognitive behavioral and dialectical behavior therapies—forms of treatment that focus on recognizing, challenging, and changing thought patterns— center on deconstructing the stories we tell ourselves and on recognizing that it’s possible to tell other stories and to build a different frame around an experience. White and Epston’s (1990) narrative therapy work on externalizing a problem has been especially helpful in our work with women, who so often feel that they are the problem, not that they are people who have had problems or faced challenges.

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Over time, Rise has come to recognize the importance of five elements in our work: privacy, safety, choice, control, and voice. None of these are elements that the child welfare system is known for. be g i n n i ng a ri s e wri ti ng g ro u p : a c ha n c e to u n de rs tand and b e u nd e rs to o d

A typical Rise workshop includes six to eight parents and meets for two hours each week for sixteen weeks. To reach parents with diverse experiences, Rise runs writing groups at community partners that already work with parents—advocacy organizations, legal providers, foster care agencies, and family support programs. Recruitment is usually done by frontline staff at the partner agency. Rise editors meet with staff to educate them about the group process and goals. Parents who want to join complete a one-page application to demonstrate commitment. All parents who complete the application are accepted. Some parents join for the opportunity to tell their stories to a system they feel has fundamentally misunderstood them. Some join to have the opportunity to understand their stories themselves, or so they can one day give their story to their children to explain what has happened. Most parents join because they hope their story can help other parents. For many parents, helping others is a way to begin to redeem the experiences they’ve had with the child welfare system. Usually, ten to twelve parents apply, eight to ten parents come at least once, and six to eight have regular attendance and complete the group. Carfare and a snack or lunch are provided, and writers are paid $100 upon the completion of their story. t r a i n i n g: th e f i rs t s te p s i n m ak in g m e a n in g

The first three sessions of each workshop teach basic writing skills. They are designed to give parents a sense of confidence and orientation in how to narrow down a life of experiences into one focused story. The first session, “Why write a personal story?,” is a discussion of the risks and benefits to writers and readers of personal essays that paint honest and not always flattering portraits of parents in child welfare. The second session, on planning a story, offers a simple outline to help parents break

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down complex life stories into a few sentences: story beginnings set up the conflict, middles focus on a turning point, ends bring the reader up to date on what has changed, what has not, and what the writer hopes or plans for the future. The third session teaches parents how to write a scene, to focus on one moment. A story idea might be “I am learning to be a better mother through my visits” or “It’s better for me to be alone than to stay with a man who abuses me.” A beginning–middle–end outline might include: (1) what your relationship with your boyfriend was like, (2) how you realized that it was domestic violence, and (3) what has changed since you made that realization? The first scene might cover “one moment when you were really scared.” In truth, these are placeholder themes. A more deeply held and nuanced story often emerges. But this is enough to get started. After this basic training, the editor arrives at each group with edits—a personal note to each writer as well as questions sprinkled throughout the story. Parents usually sit together and share a meal, then write anywhere from a few paragraphs to a few pages by hand. t h e edi to r’s ro le : a vo i c e th at be c o m e s pa rt o f t h e wri te r’s own m i nd

At Rise, the editor’s role is to be the reader’s advocate and the writer’s ally. Editors ask question after question in a long series of drafts. The editor’s role is not to help the writer tell a narrative of her life that she is already holding in mind. The writing process is a discovery process, co-constructed by the writer and editor, of moving toward truth. Bion (2005) described the therapeutic process as a method of turning jumbled, unthinkable, unknowable matter from a morass that was felt and acted upon but out of reach and unsayable into a set of feelings and ideas that could be thought, known, and even sequenced into a story. The writing process itself supports an inquisitive stance that may be rare in the parent’s life. Writers tell us, “I began to hear your voice and your questions in my head. I could anticipate what you’d ask, and I could think about it myself and write more of my story without you.” The editor’s “voice” becomes a part of the writer’s internal reflective capacity, expanding the writer’s ability to notice and reflect not only during the act of writing but also, reflexively, as she moves through life.

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en di n g s : th e re are ways f o rward

Endings are the most difficult part of the writing (and group) process. Writers are especially prone to “Kool-Aid endings”—overly bright, simplistic paragraphs that reflect the writers’ desire for a complicated, ongoing experience to be over and done. Focusing on the needs of the readers during the editing process helps writers recognize that their stories need to be emotionally complete. If writers highlight only their strengths and gloss over their struggles, or focus only on the wrongs done to them and whitewash their own wrong turns, their readers will continue to feel that they are truly alone with shameful actions and struggles. Rise writers are powerfully motivated by a desire to help others. By not shying away from the hardest parts of their stories, writers are able to offer readers the realization—often a stunning one—that someone else really has been to that same dark place, and that there are ways forward. dev e lo p i ng a ri s e g ro u p : e s s e nt ia l e l e m e n ts

A recent Rise group included six writers, all mothers with open foster care cases. All but one mother had grown up in foster care or been raised by an extended family member. These mothers’ memories of the pain of being separated from their mothers were acute. At times, as they thought about their own children being apart from them, these memories filled the mothers with debilitating shame. Other times, the memories motivated the mothers to keep meeting the court’s demands in order to move toward reunification. Several mothers in the group had had previous child welfare experiences with their children. Placement length when the group began was six months to two years, in most cases. During the course of the group, one mother signed a conditional surrender allowing a family member to become her children’s guardian, which is also what she wrote about. One mother was on trial discharge and her case closed a few weeks before the group ended. The rest continued to work toward reunification. es ta bl i sh i ng p ri vac y and s af e ty to b uil d t r ust

All Rise groups feel shaky at first, as parents decide whether it’s right for them. The first few weeks are about beginning to conceptualize a story, but

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they are also a testing period, when parents decide whether they can really trust the group and editor. In this group, negotiations over choice and control took many forms: Did they have to read aloud and do the lessons? Could they just write at home instead of in the group? Could they really choose what food they got? Underlying these questions seemed to be other questions: Are the rules meant to serve only the editor’s needs or are they genuinely developed to protect and support the writers as well? Is the group truly voluntary or are lateness or missed sessions viewed as noncompliance? Privacy and safety were negotiated, around who could know what happened in the room. Would the Rise editor share attendance information with the agency? Should the agency parent advocate (who was both a parent and a staff member) be allowed to participate in the group? Eventually, the group settled into a rhythm of arriving very late, eating and talking together, and then writing for an hour or more and ending late. Although Rise writing groups demand that participants establish and navigate group norms, they also require that writers sit with and tolerate themselves. At times, in the foster care context, getting everyone to be able to withdraw from connection to the group enough to write as individuals felt almost like perpetrating rejection, abandonment, or harsh parenting. This group also was complicated by running through the holiday season, a very difficult time for parents with children in foster care. Throughout November and December, running the group seemed to require an intense level of responsiveness, and I (Nora) left most days exhausted and dazed. bui l di n g c h o i c e and c o ntro l i n t he w r it in g pr o c e ss

By January, all of the writers had made strong starts. Their stories were about one thousand words long—still fragments, but with a little bit of a shape, and each with a sentence that encapsulated an emerging theme: I can’t stop the past from happening again. The world that doesn’t know me and really doesn’t care has me wondering: “Will I make it, can I be that supportive parent, or have I weakened?” Learning how to not use my hands to fight—there came a time that I needed to use my brains and my mouth to get my point across.

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In the beginning, writers often get lost in the chronological details of what happened to them—and so much has happened to them. What they choose to include in their story is almost random. The editor has a great deal of power to shape what the story will focus on, just by being curious about one aspect of it or another. But as the weeks progress, kernels of reflection in a writer’s story suggest the meaning of events and the cause-andeffect relationship between them. As one mom wrote, “Rise gave me the opportunity to not only write my story but to understand it. So often I’ve asked myself, ‘Why do I have so many setbacks and downfalls?’ Reading over my story, I truly realized how much pain I’ve been carrying inside me.” Settling on a theme limits exploration but also gives writers more control over the writing process; they can make choices about which moments in their lives belong in the story. Then there is negotiation around what must go in, to make a story that makes sense, and what they can leave out. Parents usually make a significant distinction between what they are willing to say in the group and what they are willing to write down: Do you want to say how you’re still able to be a mother to your children during visits? w r i t e r The visits don’t be long enough for that. e d i t o r You don’t feel like a mother during your visits? w r i t e r No! e d i t o r What, you feel more like an auntie? w r i t e r Yeah, I just see them. e d i t o r But you wrote this sentence about how nice your visits are! Why don’t you write what’s more true—that you don’t feel like a mother because it’s not very much time? w r i t e r I don’t want my caseworker to be reading that. e d i t o r Okay, then let’s take out this sentence about the niceness of your visits. What can you really say? editor

And in a conversation with another parent: Just in this part, I’m wondering—how did you get through that? That sounds awful. How did you make yourself do that? w r i t e r I was drinking a lot. editor

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Oh, that makes sense. Can you put that in? No. I don’t want to—I was pregnant, you know?

j oy, con n e c ti o n, and p e e r s u p p ort

In the winter, the feeling in the room changed. A closeness set in after the holidays, and the group got almost giddy. I left each week feeling a wonderful lightness. It became possible to joke, to wonder at the craziness of the foster care system, instead of feeling only the burden of it. One mom, in the midst of a story about being overcome by panic and memories of her own childhood abandonment, told a painful story in a “get a load of this” tone of voice: You pulled out a beer and just started drinking it during a visit at the agency? Yeah. e d i t o r I’m trying to imagine that. . . . [Laughing a little.] You just reached in your bag and pulled it out and popped it open? w r i t e r I had a Coors Light! And I just opened it and started drinking! e d i t o r [Laughing and putting her head down on the table.] I just can’t imagine you like that! a n o t h e r w r i t e r Why you laughing, Nora? w r i t e r It was crazy! It was just crazy! [Laughing too.] e d i t o r That was the best you could do. o t h e r w r i t e r You were triggered! At least you didn’t hit nobody. editor

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In laughing, it came to feel possible that emotions other than fear, anger, and shame could be part of the parents’ experiences. A growing sense of being able to bring more of a full personhood into the room began to take root. Shared moments of joy, empathy, kindness, and celebration also had a more pronounced meaning, given the overall fear and worry shared by the group. At this time, mothers in the group began to offer one another more direct support. Group members jumped into overheard conversations more often. The individual editor–writer relationship, while still moving the story forward, became less important to the experience. One mother found out a week after New Year’s (and in week eight of the group) that her case planner and the children’s law guardian had asked her

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kids if they wanted to come home and they said no. It looked like her rights would be terminated. When this mom told the group what happened, she could not say in any coherent way what she was feeling or thinking. She wrote disconnected, confl icting responses on three different pieces of paper: “I want to curse out the case planner.” “I want to give up on my kids and stop fighting.” “I’ll do anything it takes to get them back home.” That day, an older writer stayed after the group to offer this mom more support. The older writer helped this mom go to her case planner—without cursing the case planner out—to get carfare so she could visit her kids the next day. The older writer also insisted that this mom react with power. She told this mom, “Don’t accept what they say your kids say. Ask for family therapy so you can hear for yourself what your kids want! If they really don’t want to come home, you can understand that and work on it.” That day, the mom did get her carfare to go on her visit. Later, the mom also did ask for and start family therapy with her kids. During this time, group participants also became more responsible for the overall functioning of the group. When one writer was constantly seeking the editor’s approval (“Does this sound good . . . ?”), another writer was able to say politely, “I’m sorry. I came here to do my writing and I can’t think with you talking.” s u p p o rt i ng vo i c e

During this writing group, opportunities arose for participants to make public presentations and to get involved more widely at Rise. One mom from the group presented to lawyers and social workers at a forum about mental health and young moms who grew up in foster care. Another mom presented at staff training for parent attorneys and read a short speech at a Rise fund-raiser. The agency that hosted the group also held a graduation party, where the writers read excerpts of their stories in front of family members, including their children, and the agency’s staff. The room was beautifully decorated with balloons; the agency had ordered the parents’ favorite foods; and agency staff sat and ate dinner with the parents and their families. Both parents and agency staff reported a deep feeling of kinship. One staff member, who filled in to read for an absent parent, even cried while reading the story aloud.

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Parents reflected on how isolated they had felt facing child welfare and how powerful these opportunities to share their stories with peers and professionals had made them feel. One wrote, “At the Rise open house, I felt something that I hadn’t felt for a while: I felt that people understood my situation. . . . When I made a presentation, I was amazed at how much people wanted to listen. It made me feel that my voice mattered.” Another wrote, “[Making presentations] made me feel more like an asset than a liability. That’s a major change for me.” o n e w r i te r’s j o u rne y : f ro m antago n ist to a dvo c at e

When Antoinette first joined a Rise writing group, she made it clear that she wanted to talk but she didn’t want to write. Sometimes she would write a vague or emotionless paragraph in response to some questions I (Rachel) asked. Other times she’d burst forth with a few lines of pain and fury. Then she’d stop, chat, send a text, make a joke, offer a stinging critique of the child welfare system, or find some other way to disturb the group. Antoinette is a smart, attractive African-American woman in her midthirties who came to Rise through a writing group at the Child Welfare Organizing Project, a parent-led advocacy organization. Antoinette applied to the project’s Parent Leadership Curriculum and voluntarily joined the Rise workshop. Antoinette was humorous and opinionated, but while other group members seemed to relish the opportunity presented to them—to tell a piece of the story that had driven so much of the action of their lives but that they had not had the opportunity to express in words— Antoinette treated me like a schoolteacher asking her to complete some onerous math problem. Antoinette’s four children were in foster care. As she eventually described in her story, her childhood was filled with loss. Her father died before she was born. Her mother, due to drug addiction, asked Antoinette’s grandmother to care for the child. About a year before Antoinette’s children were removed, her boyfriend and the father of her youngest child died suddenly and unexpectedly. To cope, Antoinette began sending her children to her grandmother’s house on the weekends. Antoinette’s grandmother was a hoarder, and someone reported Antoinette for leaving the children there. The investigator placed Antoinette’s children in foster care, where they stayed for a year and a half.

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Antoinette wanted to write about the injustice of her case and the enormous pain she and her children had suffered. But she also seemed ambivalent about sharing too much about herself or about her moments of greatest suffering. In that first story, just who Antoinette was or what she’d gone through somehow seemed to be missing. es ta bl i sh i ng e no u g h c o ntro l to b e v ul n e r a b l e

After the writing group ended, Rise was preparing to put out a magazine issue about parents’ experiences in court. Antoinette told me she had a story she wanted to write. The story would focus on the moment that Antoinette submitted to a finding of neglect in court, and on her pain in being coerced into accepting a label—neglectful mother—she didn’t feel to be true. (Her lawyer had thought she’d have a better chance of getting her children home quickly if she “submitted” to the court’s findings.) Despite how weak Antoinette felt after her daughter’s father died, she prided herself on being the rock for her children that she’d wanted in her own life. That pride was central to Antoinette’s identity. Antoinette hadn’t wanted to write about her suffering, because it made her feel weak. In her story about court, Antoinette found a message she was ready to send: “I am a strong person, and that strength was stolen from me.” After that, the writing came easily. She started her story, “I was raised to have pride in who I am and stand up for what I believe.” Having established her strength, Antoinette was suddenly able to write about how vulnerable she felt, even to the point of overwhelming physical weakness: “Tears rolled down my face as I made my submission. My legs were weak. I thought I was going to faint. I felt drained, like the system had broken me.” The judge had asked, “Do you understand what you are saying? Is anyone forcing you to say these things?” Antoinette wrote, “It felt so crazy, like a rapist was forcing me to say that I’d wanted it.” When Antoinette described that it had felt she’d been raped by being forced to accept words that shook the core of who she believed herself to be, it made more sense to me that she wouldn’t have easily trusted me to guide her words, and I began to understand a little more about the power struggle we’d had up to this point. On the one hand, Antoinette wanted an opportunity to speak her truth and redeem her experiences. On the other hand, she was not going to let someone “in power” force her to feel weak again.

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fi n di n g t h e s tre ng th o f h e r own vo ic e

Antoinette’s story ran on page 4 of our issue “Your Lawyer and You” (Robinson 2013). Antoinette said she wished it were on page 1. She wanted everyone to read it, particularly her lawyer. Publication was an important step for Antoinette in resuscitating her strength and an identity she was proud of. At that time, Antoinette began to re-envision her identity more broadly. Through her advocacy training at the Child Welfare Organizing Project and her writing, Antoinette began to realize the strength of her own voice, as well as the strength of her desire to have that voice heard. Finding the strength of her own voice led Antoinette to want to use it to protect people like herself who sometimes didn’t feel strong. She began to envision herself as an advocate for people who struggled with depression and anxiety as she did. Over the next two years, Antoinette found outlets for her advocacy. At Rise, she joined a yearlong internship program and made multiple public presentations about trauma and parents’ experiences with the child welfare system. Outside of Rise, she began working as a parent advocate during child safety conferences—meetings that determine whether children will stay in care or return home after a child has been removed. She also was hired as part of a group of child welfare–affected parents, to give feedback on an effort to improve preventive services. Then, when she became pregnant, she joined a study of pregnant women who had experienced depression. t h e s a fe ty to ac c e p t a wh o le s e l f

After Antoinette finished her second story, the floodgates opened. Now, instead of sentences or paragraphs, I’d get pages that encompassed the entire sweep of her life. In a piece for Rise’s annual report, Antoinette wrote, “I never knew that writing words on paper would open up so many old wounds. The first thing I discovered was that I’d suppressed a lot of what happened in my life.” In her third story, Antoinette focused on the ways she’d dealt with trauma throughout her life—by getting tough but then becoming flooded by feelings of overwhelming weakness. By this point, Antoinette and I had grown close. Together we began exploring ways for Antoinette to know and accept her whole self, the strong and the weak.

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She began her story with a powerful scene: her mother’s funeral. When she was four years old, Antoinette went to a funeral and found out that the woman she always thought was her mother was actually her grandmother. Her real mother was dead. After that, her childhood was marked by a fear of being alone and of suddenly dying. In the story, Antoinette described, sometimes with a sense of nostalgia, the ways her grandmother had taught her to be tough. “When I told my mother something hurt,” Antoinette wrote, “she’d say, ‘What do you want me to do? I’m not a doctor.’ ” She laughingly told me a story of how her grandmother had taught her to handle a bully—by fighting back with the lid of a garbage can. Central to her piece was the experience of spending four years in a residential treatment center, beginning when she was eight years old. Her grandmother—the woman she called mother, the woman she’d always turned to as her rock—became overwhelmed with working full time, taking care of her own mother, and raising her grandchild alone. She placed Antoinette in the child welfare system. Antoinette described her feelings of neediness, during those four years, as having a physical intensity similar to how she’d described her submission in court. “At the residential treatment center, I became best friends with a girl named Maggie,” Antoinette wrote. “We could fight like crazy, but we also slept together, ate together, we were each other’s entire comforts. One day she got sick. Still, I lay on the bed with her and ate everything she ate. I wound up with the flu and chicken pox too. I didn’t care. I needed that closeness.” For both of us, that description of her friendship—so much like a description of what a child needs from a mother—was an epiphany that suddenly explained the freefall of loneliness Antoinette had felt when her youngest child’s father died. This story filled in the holes that had made her first story feel so incomplete. Antoinette was not writing to prove herself to a judge, a caseworker, or the court-ordered therapist who early on found her “lacking in insight.” She had come to feel safe enough to write for her own understanding and to reach other parents who needed her full story. con cl usi o n: p ri vate g ro u p s , p u b l ic vo ic e

It’s important to emphasize that Rise’s writing workshops are not offered as a direct service alone. These workshops take place within the context of

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Rise as an organization involved in child welfare reform. Parents are motivated to join our writing groups because they want their stories to be heard. They want to develop a narrative that belongs to them and is distinct from the narratives that have been written down in their case files, told in court, written in newspapers, and imposed on their lives. Writing for Rise offers parents who so often feel put down and shut down the chance to speak up. It also reverses the roles for parents who have been the ones to need help; as writers, they help others. At a systems level, the child welfare system needs to get better at creating spaces for peer support and parent leadership. At a practice level, it’s crucial that child welfare itself gets better at drawing out parents’ stories, helping parents establish themes that encompass their own desires for their family and giving them the power to accomplish their goals. Without a theme, parents too often experience their service plans as just another jumbled set of actions—a series of hoops—not a sequence of opportunities that are supposed to contribute to solving a problem. Even a simple narrative (“I have control over my future”) can anchor a positive emerging identity. To accomplish this, child welfare will have to get better at not using parents’ revelations against them. It will have to find ways to offer parents privacy, safety, choice, control, and voice. Parents’ ability to relate complex and compelling personal narratives also is imperative for their credibility as advocates for reform. Child welfare– involved parents are so often not heard and not believed. When parents can take full ownership of their own actions, while showing how their experiences have been affected by broader social and economic forces and by policies and practices that are destructive to family functioning, the emotional intensity of their stories can bring urgency to reform efforts. This is one awakening that most helped Antoinette: she began to see her own life story in a broad historical context. Antoinette wrote that her grandmother was tough not only as a personal style but also “because she grew up in a world where she felt there was no room for weakness. She grew up in Savannah, Georgia, right in the middle of Jim Crow, when black people were vulnerable no matter how strong they were.” Antoinette’s story encapsulates the experience of so many people who have lived with oppression and trauma—the lessons they learn and the lessons they feel compelled to teach their children about how the world will take advantage. Placing themselves in that larger historical context has

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allowed Rise’s writers to see their struggles to change their own lives, and to change the child welfare system, not as shameful but as almost heroic.

references

Bion, Wilfred R. The Tavistock Seminars. London: H. Karnac, 2005. Boo, Katherine. 2012. Behind the Beautiful Forevers. New York: Random House. Fraiberg, Selma, Edna Adelson, and Vivian Shapiro. 1975. “Ghosts in the Nursery: A Psychoanalytic Approach to the Problems of Impaired Infant–Mother Relationships.” Journal of the American Academy of Child and Adolescent Psychiatry 4 (3): 387–421. Pennebaker, James W., and Janel D. Seagal. 1999. “Forming a Story: The Health Benefits of Narrative.” Journal of Clinical Psychology 55 (10): 1243–1254. Robinson, Antoinette. 2013. “Coerced in Court.” Rise 24 (Summer): 4. White, Michael, and David Epston. 1990. Narrative Means to Therapeutic Ends. New York: Norton.

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Narrative Social Work in Education, Supervision, and Research requires that practitioners not only use existing knowledge but also contribute to its dissemination and development. Educating new generations of students, supervising them once they are out in the field, and developing new areas of exploration are essential professional functions. Christiana Best-Giacomini, who grew up in Grenada, was ten years old when her mother immigrated to the United States in search of work that would provide a “better life” for her children. The hidden costs of that move, for parent and child, led Best-Giacomini to a dissertation study on transnational parenting. Her chapter contains transcripts of interviews with women who made the journey, and points to the need for changes in immigration policy. Alicia Fry introduces a range of narrative methods to her group supervision of case managers at an agency serving an ethnically diverse community of older adults. Her chapter identifies and describes the process and result of each intervention. t h e a dva n c e m e n t o f t h e s o c i a l w o r k p r o f e s s i o n

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counci l on s oc i a l wor k e d u c at i on soc i a l wo rk c o m p e t e n c i e s

1. Demonstrate Ethical and Professional Behavior Sormanti and Fry “use supervision and consultation to guide professional judgment and behavior.” Their work—along with Miller’s commitment to a deeper understanding of the trauma experience and honing of listening skills exemplify “the importance of lifelong learning and a commitment to updating skills.” 3. Advance Human Rights and Social, Economic, and Environmental Justice 5. Engage in Policy Practice Best’s study is an “assessment of how social welfare and economic policies impact the delivery of and access to social services.”

Madelyn Miller is a trauma therapist whose work fueled her interest in understanding what motivates and sustains the ability to listen to stories of trauma. She seeks out pioneers in the field and listens to their stories. Her chapter pulls readers into the experience of immersive listening. Mary Sormanti introduces narrative approaches to her class in a graduate program in social work, using literature to teach about “the other” and to mitigate assumptions. The reflective writing of students at the end of the semester indicated increased awareness and sensitivity.

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Transnational Parenting T H E H IDDEN C OSTS OF THE SEARC H F O R A “ B E T T E R L I F E ”



c h r i s t i a na b e st -g i ac o m i ni

You can kiss your family and friends good-bye and put miles between you, but at the same time you carry them with you in your heart, your mind, your stomach, because you do not just live in a world but a world lives in you. frederick buechner

that capture some of the autobiographical accounts of the transnational experience for a specific group of immigrant women. It demonstrates the level of complexity and the grueling activities that are part of the lives of some transnational families. It provides social workers and other professionals with a view of the structural and interpersonal challenges and barriers that affect immigration status, which in turn contributes to limited participation in American culture. These personal stories explore the layers of psychological and financial stressors inherent in the lives of transnational parenting families.

t h i s c h a p t e r p r e s e n t s n a r r at i v e s

t h e lo n g g o o d -by e

The day my mother left is still embedded in my memory and is one I recall forty-six years later. My mother walked over to our two women guardians and hugged them. “Thank you for taking care of my children,” she said. Then she turned to her friend, who had driven us to the airport. She hugged him and said, “Keep an eye on the girls for me, please.”

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My sister began to cry. Her cries escalated from a low, melancholic sound and then became louder, drowning out all other sounds in the airport. I stood against one of the walls in the small room, hoping not to be seen, because I didn’t want to cry. I didn’t want to feel the sadness, nor did I want to hear my sister’s crying, because it made me feel worse. I watched as she threw herself on the floor and grabbed my mother’s skirt and leg trying to keep her from walking out the door that led to the plane. My mother bent down and picked my sister up, hugging her—both of them crying. Everyone in the airport was looking at my sister as she screamed for our mother not to leave her. One of the adults who came with us to the airport took my sister, and another nudged me, saying, “Go say good-bye to your mother.” Not wanting to add to the problems my sister was causing for my mother, I politely followed as my mother signaled me to come to her. I walked over and hugged her. She held me tight, then let go and said, “Be a good girl and do as they say, you hear me? And take care of your sister.” I nodded my head, letting her know that I was going to do as she asked. “I’m counting on you,” she added, as she walked to the plane with tears in her eyes. I stood very still. Tears rolled down my cheeks, but I was not crying out loud like my sister. I wanted my mother to know that although I was only ten years old I was strong and she didn’t have to worry about me. I was going to be good. I wouldn’t give these people (strangers to me) any trouble. Watching my mother walk to the plane, I felt numb. After we left the airport, we rode in silence, except for my sister’s now soft crying. s et t l i n g i n

For five years, my sister and I were co-parented, by letters and occasional long-distance phone calls from our mother and by our guardians—an eighty-year-old woman and her twenty-four-year-old adopted daughter, who lived next door with her husband. Our guardians were experienced caretakers of children in transnational families. Our guardians provided some elements from Abraham Maslow’s five-stage hierarchy of needs model—food and drink, clothing, sleep, shelter, protection from the elements, order and stability. They also ensured that we went to school and church regularly. But they believed very strongly in the proverb “Spare the rod and spoil the child,” which meant that they viewed physical discipline

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as an essential part of child development. They did not provide a great deal of emotional nurturance, because they knew, eventually, we would leave them and join our mother. That was constantly emphasized. One of my fondest memories of living with our guardians was going to Friday night drive-in movies. It was the highlight of my week for many years. However, our stability and emotional well-being were predicated on the monthly checks they received from my mother, who sent money to pay for room and board, school tuition, and transportation. She also was expected to send two or three barrels each year with clothes, toys, school supplies, household items, and gifts for our caretakers. If the monthly check was delayed, our life with the guardians went from uneventful to complaints and criticisms, including comments about our mother’s “lack of devotion” to us. Other than the few times when the mail with the check was delayed, life in our new village with our guardians had become predictable and stable. be h i n d m y s to i c fac ad e

Life in our guardians’ home was not without its difficulties. I learned very quickly that crying or acting unhappy about beatings (corporal punishment) did not get the results I wanted. Mostly, I learned to acquiesce, even when I was told we could not visit our grandmother, who lived in Boca, our old neighborhood. However, I remember two instances when I was so sad and depressed—so helpless and abandoned without mother or grandmother—that I was unable to keep up my stoic appearance. The first time was two weeks after my mother left, when I opened and read the letter that she wrote immediately after arriving in the United States. Reading that letter, I could no longer deny my tremendous pain and sadness. Jolted into the reality that my mother was gone, and that I might never see her again, I was overcome with grief. Beginning to mourn the loss of my mother, I cried and cried. The second incident occurred two years after my mother left. I had begun to adjust to my new neighborhood, school, and friends, and to my guardians and their new rules. The younger woman guardian took us to a community harvest celebration one Sunday after church. The celebration was held at the elementary school in Beaulieu, which was located very close to my old neighborhood. Many of the people I saw were from

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Boca. After an hour of meeting up with friends, two different people approached me and said, “Please accept my sympathy for your mother’s passing.” My initial curiosity turned to bewilderment and then staunch denial. The day before, I reasoned, I had received one of my mother’s frequent letters. At the same time, I realized that it takes ten days for a letter to get to Grenada from America. When the third person approached with condolences, my denial turned to grief and I began to cry. Leaving the two friends I was with, I searched for my sister and guardian. I told them what I had heard and we went home immediately. There, I repeated what I had heard to our older guardian. “New York is a dangerous place,” she said. “It’s possible.” Startled by her response, and frightened at the thought that my mother had died, I cried myself to sleep. My sister and I cried for the next two weeks, believing that we would never see our mother again. In the meantime, my guardian offered to take me to her friend, a high-ranking government official, to ask for his help in taking care of me. Given his reputation with young girls, the thought terrified me. After a few days of helpless, hopeless crying outbursts in school, the school principal (our guardian angel and my mother’s childhood teacher) intervened. He sent my mother a telegram, asking her to call the school. Two weeks after we were told our mother had been killed, she called the school and spoke to us. p er s on a l tro u b le s , p u b li c i s s u e s

Transnational families, living in two or more countries, are challenged to retain links with home and with each other, and they often are held together across borders by feelings of collective welfare and unity (Ho 2002; Schmalzbauer 2004) and engage in transnational parenting (HondagneuSotelo and Avilla 1997; Salazar-Parrenas2001; Confederation of Family Organisations in the European Union 2012). This phenomenon is not new. Historically, the primary migrant was the husband and father, whose wife and children remained in the country of origin until the family could be reunited. In recent decades, the primary migrants have been women, recruited for low-paying jobs—childcare and eldercare—in developed countries such as the United States, Canada, and Europe.

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The issue of immigration is both personal and public (Mills 1959). Many of the women are mothers, but they work in the shadows because of their undocumented immigration status and are unable to visit their children. If they leave the country of employment, they risk not being allowed to reenter, losing what has become their family’s only source of income (Bernhard, Landolt, and Goldring 2008; Fresnoza-Flot 2009). Consequently, they often are separated from children and family for many years. These long periods of separation lead to transnational parenting or parenting from a distance, which continues to be a significant part of many lives today (HondagneuSotelo and Avilla 1997). Immigrant parents engage in transnational parenting in order to adapt to and survive restrictive immigration laws, which can be linked to institutional racism (Provine 2013; Park 2004; Chin 2005) and are used to keep some people “undocumented” and, subsequently, marginalized and subjugated (Gomez 2007). On a micro level, the long periods of separation, due to power arrangements on a macro level, contribute to breakdowns in parent–child relationships, a result of separation and a loss for both parents and children (Boss 1999).

“w h y do n’ t th e y g e t i n li ne ? ”

The question is commonly asked, “Why don’t they just get in line?” The fact is, there is no “line” for the vast majority of unauthorized immigrants, who do not have the necessary family relationships or employment opportunities to apply for legal entry. Very few qualify for refugee status. The numerical caps that are being used today were established many decades ago and do not match today’s changing economic and labor demands. According to the Immigration Policy Center (2009), there are four main ways for people to enter the United States with a chance to become permanent residents: 1 family-based immigration, which means a permanent resident or citizen can petition to bring a spouse, parents, unmarried children, or siblings; 2 employment-based immigration, which means an individual must have an employer willing to sponsor him or her (an extensive and expensive process for the employer); 3 humanitarian-based immigration, which means an individual must prove that she or he is fleeing persecution (a difficult and sometimes lengthy process); or 4 other, which is limited and very restrictive (one example is a diversity lottery).

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Given the outdated caps, lengthy backlogs of visa and citizenship applications, limitations on family-based petitions, barriers to employment-based applications, inadequate government infrastructure, and a focus on security and border enforcement, the process of gaining permanent residency prior to entering the United States is an arduous one. Instead, due to an urgent need to work and take care of families, many people circumvent the system by obtaining a visitor’s visa, which is time-limited. If they overstay the timeframe of their visa, they are categorized and labeled, derogatorily, as “illegal” or “undocumented.” t r a n s n ati o nal fam i li e s and th e c hil d w e l fa r e s ys te m

In my work with traumatized families in the child welfare system as well as with immigrant families, I find that there are common themes. Families in the child welfare system, like immigrant families who parent transnationally, experience substantial periods of time in which children and parents are separated from one another. These families often share socioeconomic status and are called working-class poor. In urban areas, these families are often people of color. Some of the families in the child welfare system also are immigrants and face challenging parent–child reunifications. Many children who are left in the country of origin while a parent is working abroad are abused and, when reunification fails, some of these children become victims of sex trafficking or prostitution. Frequently, parents and children experience trauma and suffer from separation and ambiguous loss. They often express pain by engaging in risk-taking or acting-out behavior and/or exhibit symptoms of depression. They may have difficulty forming healthy attachments and genuine, lasting relationships. Parents frequently suffer from guilt, and they often try to overcompensate for lost time by giving their children material goods. The effects of trauma and loss can be intergenerational. Grandparents, parents, and children suffer the effects of separation due to foster care placements or transnational parenting. Usually, the single most important goal is family reunification. Although this often is seen as an immediate panacea for all a family’s problems, it is usually, in fact, the beginning of a lifelong journey of forgiving, letting go, and healing for each family member.

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mot h e r s te ll th e i r s to ri e s

The narratives in this chapter originated from my social work dissertation study. The study included twenty women who identified as African-Caribbean or black and came from five English-speaking Caribbean countries: Antigua, Grenada, Jamaica, Saint Lucia, and Trinidad. Participants in the study were mothers who had migrated to New York City in the past twenty years and had left their children behind in their countries of origin. Upon arrival in the United States, the women were undocumented immigrants and, at the time of the study, they had been reunited with one or more of their children and were living in the United States—with or without a change in their immigration status. The study employed a convenience sample or nonprobability sampling. The participants were recruited through presentations I conducted in a neighborhood church and by asking these participants to recommend a friend who met the criteria for participation in the study (Patton 1990). The data was collected using a structured interview that included twenty-four questions. The interview lasted approximately one and a half hours and was audio recorded and later transcribed and analyzed. The interviews were very moving. Many of the women revealed feelings that were still very fresh and present, years later, and, during the interview, some were able to retrieve the pain associated with the memory of the separation. As a clinical social worker, I stopped the interview whenever a participant exhibited signs of distress, pain, or discomfort. The disruptions were sometimes for a brief moment and sometimes for longer periods, when they needed to compose themselves. Before proceeding, I checked to see if they felt emotionally able to continue with the interview. Some mothers required time away from the interview; a few were unable to continue and had to reschedule the interview. As part of the research project, participants were given a list of grief counseling and immigration service resources. The narratives presented here focus on a small sampling of study questions related to a woman’s reasons for migration, her separation from her children, and her new family composition. Responses to the question “What was your reason for migrating to the United States, even if it meant leaving your children for an indefinite period of time?” revealed that these new immigrants were no different from earlier European immigrants, except for gender. Many mothers migrated with a number of uncertainties, yet they were driven by their desire and ambition to position

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themselves for opportunities that, historically, the United States has been known to provide. They wanted jobs so that they could work and care for themselves and their children. Some wanted education for themselves but, even more, they wanted education for their children. A few indicated that they had migrated to escape political persecution or domestic violence. Here are women’s thoughts on migrating when they had to leave their children behind: I wanted a better future for my children and myself. I had six children at the time, and two of them were in high school, and my income was not enough to take care of them. I was a single parent. I wanted a better life for my children and myself. I wanted them to have options beyond a high school education. The main reason was educational opportunities for my children. I came here to go to school. I wanted a better life for me and my daughter at the time. I had a two-yearold, with no job and very little money. I thought that if I came here I could get a job and work and go back home build a little house, open a shop, and go back to take care of my daughter in three years. Three years turn into six years before she came up. I worked with the government when [Maurice] Bishop died. After the invasion, life changed and things were not going good. People were being hassled. I was married at age thirteen because I was pregnant. My husband abused me and I had no money of my own. I had to leave my abusive relationship. I also had to come for financial reasons. I came to make a better life for my son and myself.

When they were asked to describe what it was like to be separated from their children, these women’s responses were candid and painful—not only for them to recall but also for the author who bore witness: It was hard because I left her with a friend, not family, because my mother lived in Trinidad at the time. It was difficult because when I called there was always a sad story. When I am talking to my daughter on the phone, the woman she lived with would pick up the other line to find out if she was telling me something. But I knew she was at the other end, so it was difficult. I would be careful what I said to my daughter because I did not want, when

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I hung up the phone, it became more difficult. Sometimes my daughter would cry, and that would make me cry. That’s why I hurried up to get her, because I could not stand the fact that she was unhappy. The woman I left her with did not want her to go visit other family members; she just wanted her to stay at home always. She grew up with family members, and it was hard for her my daughter not to be able to spend time with other family members that she grew up with. Well, like I said before, I knew we were far apart, so I stayed in touch with her. I would call, I would send things for her, if anyone of my friends came up on vacation, I would send things for her. I would send little cards to make her feel comfortable. The separation was hard. I would cry a lot. I would see children on the train and I would cry. I grieved. I would get angry and cry or eat a lot of ice cream. I would go out and buy her a lot of stuff, but the longing and emptiness was still there. When you talk to the child on the phone, it kills you. It’s a terrible thing. You wish you had money and you did not have to leave your child to go look for it. In order to take care of your child, you have to leave. It’s like someone cut a piece of your heart out. I would feel that I was being punished for having a child early in life. Sometimes I would get angry at the child’s father for not being there to support our child so I could stay with her to take care of her. It makes you angry and bitter and sad. Every day you get up and you tell yourself things will get better. Sometimes you can’t sleep. There was a period in my life where I thought I was going crazy. I couldn’t sleep. There isn’t anything you can do. You can’t go back and you can’t get a visa to send for her. I tried four times to get a visa and they turned me down. It’s just real pain. This is the first real pain I ever felt in my life. When I had my other child, I still felt pain; the guilt is unexplainable. I left her with my older sister and her family . . . Everything made you angry at everyone and everything, knowing deep down you are angry at yourself for leaving your child. No, I wouldn’t do it again.

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i mp l i cat i o ns f o r p rac ti ti o ne rs

The sadness and pain that mothers expressed as they recalled the agony of being separated from their children speak to the issue of unresolved grief. In her book Ambiguous Loss, Boss (1999) describes ambiguous loss as characteristic of frozen or unresolved grief, which she defines as incomplete or uncertain loss inherent in “uprooting” or migration. She states, “Of all the losses experienced in personal relationships, ambiguous loss is the most devastating because it remains unclear and indeterminate. . . . Personal and familial problems that stem from ambiguous loss have less to do with the psyches of those experiencing the loss than with external circumstances beyond their control that prevent them from completing the grieving process” (5). As a social worker counseling parents who are experiencing the stress of being separated from their children and loved ones, it is important to recognize that many of the symptoms are a result of external issues and not necessarily pathologies. At the same time, however, social workers should understand that many of these stressors can trigger symptoms of depression, as was identified in the narrative above. Some of these symptoms are insomnia, appetite disturbance, trouble thinking or concentrating, feeling no pleasure at all in most activities, feeling excessively guilty, and loss of energy or fatigue. One of the mothers mentioned, “You can’t go back and you can’t get a visa to send for her. I tried four times to get a visa and they turned me down.” This is the reality for many people who are undocumented and trying to apply to become permanent residents. The system is designed in such a way that they feel trapped and helpless. Many women enter the country with visas that allow them to work temporarily, but when their visas expire, the system is not designed to allow them to follow a track to permanent residency. Individuals and institutions claiming that they can help navigate the immigration system and change immigrants’ status often exploit the women. Undocumented workers also are prey for employers who expect them to work long hours for little or no pay (Best-Cummings 2008). Psychological absence is common in immigrant families (Boss 1999). Often, immigrants, who are not able to fully adjust to the host country because of uncertain immigrant status, live in two worlds. Unable to travel home, they are homesick, melancholy, and preoccupied with loved ones in

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their country of origin. Boss also acknowledges that, in some cases, women may have children who are born in their country of residence, yet they remain unavailable, psychologically, to those children. As one of the mothers in the study said, “When I had my other child, I still felt pain; the guilt is unexplainable.” Parenting from a distance at times requires mothers to support two households, one in the United States and the other in their country of origin. This dual responsibility is both financially and emotionally challenging. Some of the women in the study reported having to send funds to caretakers for the children in the country of origin while also having to pay rent, buy food, and pay babysitters to care for children born in the United States—in order to work as a childcare provider for a more affluent U.S. family. In spite of these challenges, many reported taking care of their children in the United States, staying focused on providing for family in their country of origin, and, eventually, bringing the children left behind to live with them in the United States. My husband was very supportive, and he helped me bring my daughter up. He would also speak to her on the telephone when she was home. He gave me advice, as my husband, but I was very focused on getting her up, and he knew that. My second daughter was born here in the United States. She was two years old when my daughter arrived. There were no problems. My husband was supportive and helped me. I was very single-minded in my plan to get my daughter up here.

For one mother, getting pregnant while living in the United States and having to share the news with her family back home provoked anxiety. When I learned I was pregnant, I wrote my mom a letter and I sent my children a letter. Before they received the letter, I called them and explained that I was pregnant and I would give him a chance to live just like I did them.

con cl usi o n

The migratory journeys of many women are not easy ones. Many must weigh the choice between working in a foreign country, for financial and educational opportunities for themselves and their children, and living in poverty with their children in their country of origin (Best-Cummings

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and Gildner 2004). The decision to migrate is complex, as is illustrated by one of the women in the study. I moved here for a better life. I was a single parent, working, and I didn’t think I was giving my daughter the life she deserved. Back home, having an education is important, and since I was a teenage mom, I had to stop going to school, so I did not get to finish school. I was working and making a low salary, and I wanted to give my daughter more opportunities than I had.

Issues of immigration are both important and complex. As President Obama (2014) put it: We didn’t raise the Statue of Liberty with her back to the world; we did it with her light shining as a beacon to the world. And whether we were Irish or Italians or Germans crossing the Atlantic, or Japanese or Chinese crossing the Pacific; whether we crossed the Rio Grande or flew here from all over the world—generations of immigrants have made this country into what it is. It’s what makes us special.

Although the Obama administration has done much to help immigrants through executive orders such as Deferred Action for Childhood Arrivals and Deferred Action for Parents of Americans and Lawful Permanent Residents, the Obama administration also has deported a larger number of immigrants than any other presidential administration in history. And although transnational parenting is difficult for both parents and children, it should be noted that my story, and the stories of the women in the study, are not stories of victimization but of resilience. They are stories with global implications and are intended to lift up and give voice, globally, to transnational families. Utilizing a narrative approach with immigrant families helps the social work practitioner to focus on the different levels of social work—micro, mezzo, and macro. This allows the social worker to understand an individual’s stressors while analyzing them from a variety of angles. Using a narrative lens with transnational families, practitioners can simultaneously connect to different levels of an individual’s experience and knowledge. For example, connections can be made with the client’s personal attitudes and emotions; with families, friends, and support systems; with employment and employers, communities, immigration laws, cultures, country of origin, and the larger society as a whole. These various levels of narrative inform us

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that one’s narrative is linked to many other stories. Each story has various dimensions that are connected to both internal (psychological) and external experiences. The narrative lens is also an opportunity for social workers to organize a storyteller’s information, giving meaning and focus to its relationships. It can be organized in a particular pattern or by itself. Stories also help us understand different groups of people, their mores and cultural values, their internal group interactions and dynamics, and their interactions with other groups. Additionally, the group dynamic provides insight into the different levels of oppression, privilege, and power. For example, when a client is female, a person of color, undocumented, poor, and originating from a developing country, the power dynamics and oppressions are multilayered. As a result, social workers can frame narrative from a social justice, racial equity perspective (Social Work Policy Institute 2014). Finally, using narratives in research enables a social work researcher to explore a particular phenomenon in a more comprehensive and thorough way than quantitative research allows. As a clinician, an administrator in the child welfare system, and a researcher, I have used narratives in all facets of my work, and I find it very valuable. references

Bernhard, Judith K., Patricia Landolt, and Luin Goldring. 2008. “Transnationalizing Families: Canadian Immigration Policy and the Spatial Fragmentation of Care-Giving Among Latin American Newcomers.” International Migration 47 (2): 3–31. Best-Cummings, Christiana. 2008. Successful Transnational Parenting by African Caribbean Mothers Who Migrated to the United States: A Qualitative Study of English-Speaking Caribbean Immigrant Women’s Transnational Parenting Roles. PhD diss., City University of New York. ProQuest (3310761). Best-Cummings, Christiana, and Marjorie Gildner. 2004. “Caribbean Women’s Migratory Journey: An Exploration of Their Decision-Making Process.” Journal of Immigrant and Refugee Services 2 (3/4): 83–101. Boss, P. 1999. Ambiguous Loss: Learning to Live with Unresolved Grief. Cambridge, MA: Harvard University Press. Chin, Gabriel J. (2005). “Chae Chan Ping and Fong Yue Ting : The Origins of Plenary Power.” In Immigration Stories, ed. David A. Martin and Peter H. Schuck, 7–30. New York: Foundation Press.

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Confederation of Family Organisations in the European Union (COFACE). 2012. Transnational Families and the Impact of Economic Migration on Families. Brussels: COFACE. Fresnoza-Flot, A. 2009. “Migration Status and Transnational Mothering: The Case of Filipino Migrants in France.” Global Networks 9 (2): 252–270. Gomez, L. (2007). Manifest Destinies: The Making of the Mexican-American Race. New York: New York University Press. Ho, E. 2002. “Multi-Local Residence, Transnational Networks: Chinese ‘Astronaut’ Families in New Zealand.” Asian and Pacific Migration Journal 11 (1): 145–164. Hondagneu-Sotelo, P., and E. Avilla. 1997. “I Am Here, but I’m There: The Meaning of Latina Transnational Motherhood.” Gender and Society 11 (54): 548–571. Immigration Policy Center. 2009. Breaking Down the Problems: What’s Wrong with Our Immigration System? Special report. https://www.americanimmigra tioncouncil.org/sites/default/fi les/research/Problems_and_Solutions_2010. pdf. Mills, C. Wright. 1959. The Sociological Imagination. London: Oxford University Press. Obama, Barack. 2014. “Remarks by the President on Immigration.” Del Sol High School, Las Vegas. November 21. Park, J. S. W. 2004. Elusive Citizenship: Immigration, Asian Americans, and the Paradox of Civil Rights. New York: New York University Press. Patton, M.  Q. 1990. Qualitative Evaluation and Research Methods. Newbury Park, CA: Sage. Provine, D. M. 2012. “Local Immigration Policy and Global Ambitions in Vancouver and Phoenix.” In Taking Local Control: Immigration Policy Activism in U.S. Cities and States, ed. M. Varsanyi, 217–238. Stanford, CA: Stanford University Press. Salazar-Parrenas, R. 2001. “Mothering from a Distance: Emotions, Gender, and Intergenerational Relations in Filipino Transnational Families.” Feminist Studies 27 (2): 361–390. Schmalzbauer, L. 2004. “Searching for Wages and Mothering from Afar: The Case of Honduran Transnational Families.” Journal of Marriage and Family 66 (5): 1317–1331. Social Work Policy Institute. 2014. Achieving Racial Equity: Calling the Social Work Profession to Action. Washington, DC: National Association of Social Workers. http://www.antiracistalliance.com/SWPIRacialEquityReport.pdf.

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The Worker–Mentor Story NARRATIVE APPROACHES IN SOCIAL WORK SUPERVISION



al i c ia fry

All stories have a curious and even dangerous power. They are manifestations of truth—yours and mine. v e r a n a z a r i a n , Dreams of the Compass Rose

The office smells of burned coffee and oranges, the computers have just gone down for the third time today, and it’s raining. My scarred desk is piled with papers and projects to be completed “ASAP.” My left temple is throbbing, and my supervisee and I are dancing. It’s a familiar dance, in which she throws out her concerns about clients, an eightysomething couple whose adult children “don’t do enough for them.” The worker fears that the couple will end up in a nursing home. Trying my best, I toss out clinical observations and practical suggestions, each of which she throws back, along with “Yes, but . . .” and variations on the theme of “That won’t work.” As the air thickens with mutual frustration, I recall the wise words of a mentor, who asserted that being a good social worker (and a good social work supervisor) requires two primary qualities: empathy and curiosity. I notice that my usually upbeat and energetic supervisee is slumped in her chair, has purplish circles under her eyes, and wears a defeated look. I recall Simone Weil’s statement, “The only real question to be asked of another is ‘What are you going through?’ ” (quoted in Miles 1986, 94). I gently ask my colleague that very question. In response, she begins sobbing softly while shaking her head. We sit quietly for a time, and when her tears subside, I

i t ’s 3 : 2 2 o n a f r i day a f t e r n o o n .

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say simply, “Tell me. When you’re ready, tell me your story.” She does, and we begin our journey into the world of narrative supervision. This encounter took place in a publicly funded geriatric case management program in New York City, where I was a social work supervisor for seven years. We provided home-delivered meals, transportation, home care, counseling, and intensive case management for older adults who presented with problems of chronic illness and pain, economic insecurity, distressed family functioning (including elder abuse), and mental illness. In addition to my direct practice caseload, I supervised social work interns and case managers. Some had social work backgrounds and some were educated in other fields. The agency provided training for staff members who were new to the field or untrained in the professional use of self, which is critical to geriatric case management. The responsibility for this training fell primarily on line supervisors. Case managers provided clients with comprehensive biopsychosocial assessments, assistance in claiming benefits and entitlements, short- and long-term care planning, crisis intervention, counseling, and caregiver/family support. During an average week, each case manager conducted multiple home visits, intakes, and assessments; made phone calls and collateral and family contacts; provided information about benefit applications and referrals; and responded to client emergencies. In addition to completing mounds of paperwork and complying with frustrating regulatory requirements, workers were expected to be “experts” in many areas, and, on any given day, might be called on to deal with chronic issues such as illness, pain, disability, hoarding, and dementia or crises precipitated by eviction, family violence, medical emergencies, end-of-life care, suicide attempts, or the death of a client. Because many clients were functionally impaired, much of case managers’ work was performed in clients’ homes, where workers often faced unsanitary conditions and/or safety concerns. As their supervisor, I struggled each day with how to keep them safe, informed, motivated, engaged, and connected to clients. Most case management work is long term, with the ultimate goal of helping clients age safely in their homes and remain meaningfully engaged with their interests and communities. As Burack-Weiss and Brennan (2008, 20) write, “The worker must attend not only to life-sustaining activities, but to life-enhancing activities.” It is here that narrative can guide the worker in joining clients and helping them to tell stories as a way to

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enhance their lives. It then becomes the role of the supervisor not only to teach workers the skills and techniques of narrative to utilize with clients but also to co-construct the worker’s story as it relates to his or her professional development and day-to-day work. When I was introduced to narrative approaches, I saw them as ways to support the helping relationship, prevent worker burnout, and improve client outcomes by teaching workers how to interweave their stories with their clients’ stories. A review of the literature revealed that I was not the first supervisor to embrace narrative in supervision. Parker J. Palmer (2006, 40) writes, “We teach who we are. When I do not know myself, I cannot know who my students are. Good teaching requires self-knowledge—it is a secret hidden in plain sight.” Lawrence Shulman (1992, 48) writes of the “parallel process,” which looks at interactions between a supervisor and worker that are based on the same values and skills that supervisees use in work with clients. Vicki McCready and Louise Raleigh (2009, 87) encourage workers to develop personal narratives that involve “reminiscing about previous life events and making sense of one’s life story.” They describe narrative as “a means by which we develop our own sense of identity; it is how we link the events of the day and the events of our lives cohesively.” And Michael White (1995, 7) writes, “Each time I tell a piece of my story, I release a little bit of hurt from inside me, and I am set free.” This is possible for the client, the worker, and the supervisor. In supervisory work, I saw workers who, although very talented and dedicated to the clients, were becoming disillusioned and disconnected from their work, which I feared would lead to reduced morale, compassion fatigue, decreased productivity, and staff burnout. My goal was to use narrative strategies to reframe the work in more personally meaningful ways, to reenergize and reconnect workers with clients via co-constructed narratives. Using my narrative training, coupled with more than thirty years of experience in the field, including fourteen years as a supervisor, I developed a five-part narrative supervision model that, after receiving the go-ahead from my own supervisor and program director, I applied to working with a diverse and feisty team of four case managers (two with master’s in social work degrees and two with bachelor’s degrees in related fields) and one MSW student intern. Here, I describe specific methods and techniques I employed as well as specific examples, challenges to the work, measurable

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outcomes, and suggestions on how narrative methods can be incorporated into the ongoing supervision of social service practitioners. training

I began this project with a two-hour training for the entire case management program staff, which was attended by program managers, supervisors, and line workers. During this session, I introduced the concept of narrative social work, described the history and evolution of narrative in the field, and shared the basic philosophy, methods, and techniques of narrative, which I illustrated with quotes, examples, artistic prompts, and group exercises. The session concluded with the attendees agreeing to read Arthur Frank’s (1998) article “Just Listening: Narrative and Deep Illness.” Each person also committed to trying at least one narrative technique with at least one client during the following month and to report their experiences to the group during the next staff meeting. Over the subsequent year, I held a series of mini trainings, each focusing on one particular aspect of narrative work, based on feedback from the participants. Each workshop began with a “go-around,” during which we discussed events that had transpired since the previous session, plus a check-in of our “homework.” This generated curiosity within the group, built enthusiasm for narrative methods, and led to a mutual staff “buy-in” for the project. g r ou p s u p e rvi s i o n

The supervision model in my agency, traditionally, had been weekly oneon-one supervision, with the supervisor taking the lead, setting an agenda, and determining follow-up actions and goals. However, I believed that the inherent power differential in individual supervision could be lessened by using narrative methods in a group setting. So much of supervision is modeling and practicing skills and behaviors. I envisioned the group as a safe place in which workers not only could practice telling stories and listening respectfully but also could model and learn from one another in the service of developing the professional use of self. I approached my supervisor with a proposal to initiate group supervision, which would supplement individual supervision, with the goal of increasing morale and productivity while

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improving time and cost effectiveness. To my delight, she agreed. I began monthly narrative group supervision with our team. A typical narrative group supervision session included sharing client stories and members’ own experiences of partnering with clients. We also experimented with narrative exercises such as the “name exercise,” list poems, and the “grandparent exercise.” In the name exercise, workers sit in a circle and each worker shares a narrative about the history, meaning, and significance of his or her name (first and/or last). Other members listen and ask open-ended questions to elicit deeper insights about how the worker feels about his or her name. We then tie this to ways to use the name exercise to elicit critical material from clients during the ongoing assessment process. Often, workers speak of family history and the cultural significance of their names, and how this has shaped their identities and self-concepts. The list poem begins with the group facilitator or a group member giving a prompt, such as “These hands have . . .” or “What gives my work meaning is . . .” or “What challenges me most at work is . . .” Members take turns completing the sentence and create a co-constructed list poem. We read the poem aloud, identifying similarities, differences, and patterns. At this point, the group facilitator may ask, “What in this exercise surprised you?” or “How might you utilize this technique in work with clients?” In the grandparent exercise, participants choose one grandparent, living or deceased, and, speaking as that grandparent, tell a piece of his or her story to the group. During this exercise, some workers became quite emotional as they imagined themselves in the person of their grandparent. One case manager spoke as his grandmother, a Holocaust survivor, and was able to convey, and connect with, suffering as well as hope and resilience. Another spoke as her grandfather, an Irish immigrant, who grew up in a large, impoverished family. “We were poor,” she said, “but we didn’t know we were poor. Once, I asked my father if we were rich or poor and he replied, ‘Dear, we are very rich—rich in family, rich in friends, rich in love.’ ” Workers then connect these bits of their family histories to stories of the people with whom they work. A fair portion of our time in group supervision focused on the challenges of incorporating narrative approaches into day-to-day work, which tends to be rather concrete, documentation heavy, and deadline driven, with the constant pressure of feeling there is not enough time. As a group,

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we acknowledged these challenges and committed to pursuing narrative in spite of them, believing that the use of narrative may actually save time by preventing what Lawrence Shulman (1992, 102) calls “the illusion of work.” Portions of group supervision sessions were devoted to time management skills, generating a narrative “bag of tricks” (including a list of easy-to-use questions and prompts) and brainstorming ways to modify and fit narrative into our regular work. As narrative supervision progressed, workers found themselves “thinking narrative” as they increasingly desired to bear witness to their clients’ lived experiences. Staffers often found themselves confronting their own issues around race, culture, diversity, and intersectionality. When this occurred, we explored these topics via writing and sharing stories of our own racial and cultural lived experiences. The prompts included “How is it to be a person of color in this society?,” “How is it to walk through the world as white?,” and “Tell us one story about race.” The follow-up question was “How does this relate to clients who are a different (or the same) race/ethnicity as you?” A few weeks after trying this exercise, a worker told of meeting with a Muslim couple who came to New York from Pakistan in 1986 and had lived in their Queens neighborhood for many years. During the initial assessment in their home, the worker asked, “How has it been for you here since 9/11?” With tears in his eyes, the worker recalled the response of the husband, who burst into tears, saying, “Thank you so much for asking. It’s been so hard for us since that terrible day.” The worker’s courage to ask the “elephant in the room” question helped empower the couple to tell their story, which they did, and this allowed healing to begin. After six months of narrative group and individual supervision, staff members reported that, as a result of this process, they felt increased empathy and a deeper connection to their aging clients and were more likely to ask the kinds of questions that would elicit storytelling. We nicknamed this process “going beyond the form.” When conducting assessments, workers were required to complete a twenty-six-page form that emphasized problems and deficits rather than strengths and story. Often, workers focused so much on getting the form fi lled out that they lost the essence of who the client was. In group supervision, we challenged each other to try client-centered, narrative approaches to assessment. Staffers began to report that, when they started with story, the client opened up more, the assessment went

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more smoothly and naturally, and the form “filled itself out.” The group members shared honest feelings, gave practical feedback, and supported one another in facing the challenges that were inherent in our work. Those who worked with older adults often bore witness to various forms of loss, which included cognitive, physical, functional, or financial loss and, of course, loss of life. When a client died, or left our program for another reason, workers were encouraged to create a narrative tribute to the client, which could be a brief essay, a poem, a drawing, a collage, a card, or even just a case note. They shared their tribute with the group and added it to our narrative archive, which we called “Tales of Transition.” We also created a literary arts magazine and a Facebook page that showcased, with their permission, clients’ and staffers’ narrative tributes. For instance, Maria wrote, “Working with her was an experience to cherish. Her story oozed out of her like juice, and listening to her became not a task but a precious, life-affirming gift.” Anna wrote, “Working with you and your family has taught me to look beyond the surface frailty to see the incredible strength and power underneath. Your courage gives me courage.” Teresa wrote, “Our work with older people is about meaning-making. In the twilight of their journey, we help them to make peace with their lives, and to find their way home.” I wrote, “Now, I know you by your essences. You are survivor, sojourner, and troubadour, sweetheart and scholar, lover and leader, teacher and timekeeper. You are sepia photos and diary-pressed flowers, mothballs and memories, mistakes and misgivings. You are dreams deferred and dreams realized. You are yesterday, today, and tomorrow. You are you, you are us, you are me.” g en og r a m s and fam i ly m ap p i ng

Aware of the crucial importance of self-awareness in social work, and the key role that family history and experiences play in our stories, I introduced work with the genogram/family map, a pictorial narrative that shows the history, patterns, and interplay of behaviors in a family across multiple generations. Each staffer drew his or her family genogram, using a simple format that I provided. During individual supervision, we reviewed it, focusing on patterns, surprises, insights, and the worker’s thoughts and feelings about it. We viewed this information through a systems theory and a

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narrative lens before the worker used the genogram as a springboard for writing a short story about family experiences that affected her or his relationships with clients, colleagues, and supervisors. Written explorations were kept in workers’ journals, and we referred to them periodically as our stories thickened. clos e r e ad i ng and re f le c ti ve wr it in g u s i n g p r o m p ts

Close reading and reflective writing is at the center of the narrative work developed and taught at Columbia University. In my experience, it is a vital method, allowing people to uncover and recover essential aspects of themselves in a creative and nonthreatening manner. In supervision, the goal was to teach the worker how to use this method with clients, but, first and foremost, the intention was to invite supervisees and supervisor to “integrate multiple sources of knowledge” (Council on Social Work Education 2012, competency 2.1.3a) when using close reading and reflective writing, to discover and tell our own stories. When we do, we “practice personal reflection and self-correction to assure continual professional development” (competency 2.1.1b). When I initially introduced the concept of close reading and reflective writing to my staff, I encountered a bit of resistance, along the lines of “This is impractical” and “It’s too artsy-craftsy.” However, the “Let’s just try it” approach, coupled with the offer of refreshments and promises that the artistic prompts would be work-related, encouraged the staff to relent, and this became one of the most powerful tools in narrative supervision. I began by having them observe our senior center’s artists-in-residence projects, to illustrate how deeply and meaningfully the clients connected with this program. I then asked the staff to share, in story format, their experiences with the arts, as well as the experiences of some of their clients. During this process, I learned that, among us, we had a trained singer, a devotee of African dance, a former drummer, a sketch artist, and two published poets, including me. After exploring how an artistic auditory or visual text such as a song, poem, or painting prompts deep emotions, memories, and connections, we dove in. We began with my poem “Getting to Know You,” as it was inspired by, and dedicated to, our agency’s clients and staff and describes a geriatric case

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manager’s process of discovery in getting to know her clients and herself. We took turns reading it aloud, and I then asked staff to listen to their own thoughts, feelings, and reactions, without “editing” or “correcting,” while listening again. We then went around the group, each worker reading aloud directly from his or her paper and sharing how the poem related to his or her story and role as a case manager. In general, the staff was surprised by the similarities in their responses, and several were able to open up honestly about how they initially viewed their clients, how their views changed, and how that directly and indirectly affected their day-to-day work. I next showed a color photograph of an older white woman lying in a nursing home or hospital bed, looking out the window, surrounded by African artwork and artifacts. I asked the group to write about what they saw and felt, to consider who this woman might be, and to briefly tell her story as they imagined it. A lively group discussion ensued, which helped us to confront some of our stereotypical thinking and to embrace the varied paths a person’s life could take. I guided them in writing about incongruities in their images of self, as these connected to their identities at work. We continued this process, using songs (“In My Life,” by the Beatles, and “My Way,” by Frank Sinatra, being warm favorites), quotes, short stories, paintings, sculptures, a dramatic reading of Douglas Hill’s (2009) Caregiver Collage, and numerous poems. The poem that elicited perhaps the most controversial and passionate discussion was Elizabeth Anne Kinsella’s (2006) “Professionalism,” which painstakingly chronicles the story of a worker who is trying to find a balance between being “professional” and being “human” while working with a client who is dying. The staff grappled with the prompt “Who am I as a professional versus a human being?” and kept weaving complexity into their narratives. As our stories unfolded, we revisited this poem more than once. r ol e p l ay

The dreaded roleplay, as a supervisory modality, met with the most resistance from my staff. I countered this by expressing empathy, explained that the main purpose of roleplay in narrative supervision is to facilitate the giving and receiving of the client’s (and one’s own) story by enacting experiences in the moment, and contracted with a group or individual to have the supervisory session remain a “judgment-free” (including self-judgment-free)

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zone. I offered staff members the choice of playing client or worker, and I bolstered those who volunteered with plenty of praise and encouragement. Most of our narrative roleplays centered around the client and/or the worker’s story, in particular when the client or worker seemed “stuck” or when the worker was having difficulty relating to the client’s lived experience or pain. Following roleplays, discussions usually focused on questions about feelings, such as “What was it like to put yourself in your client’s shoes?,” “What was the client feeling in that moment?,” “What were you feeling?,” or “How can we use this experience to advance the client’s story and your story?”

o u tco me s

In spite of the challenges of limited time, regulatory requirements, staff turnover, and problems of infrastructure, the outcomes of the narrative project were quite positive. Workers reported and exhibited a greater sense of team cohesion and connection to their work. There was more energy and positivity and less gossiping and griping. Work with clients tended to be more creative when workers used narrative techniques that they learned or developed on their own. For example, one case manager made an audiotape of her client, who had been a Jewish cantor, singing about his life. Another worker helped a client write his story of heroism during World War II and got it published in the newspaper. A student intern helped a client publish a book of her poetry and, at the end of her internship, she and the client co-constructed a poem about the story of their helping relationship. Clients reported feeling more “cared about” and more empowered by their workers, whom we came to refer to as “care partners.” Clients exhibited improved decision making, experienced fewer crises, adhered to care plans, and managed pain and stress more effectively. The following suggestions may be of use to those who wish to incorporate narrative into their supervisory practice: •

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Read, read, read! Attend training workshops. Become as familiar with narrative methods as you can. Make a commitment that you will find a way to incorporate narrative, “no matter what.”

the worker–mentor story

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Research narrative-based practices. Before approaching your director, manager, or staff, know your audience and create a strong pitch based on what most moves them. Be prepared for objections, and be willing to compromise. Be realistic about what you can and cannot accomplish, given time constraints, organizational structure, and your priorities and schedule. Construct your personal and professional narratives, or co-construct them with the help of a trusted friend or colleague. Be flexible and creative in modifying narrative methods to fit the realities of your personality and practice. You may want to introduce one or two techniques and build from there. Narrative is story. It begins with one sentence. Take a deep breath, embrace your story, and start writing it!

This brief snippet is from an audiotaped interview between a worker named Valerie and her care partner, Ruth, upon the occasion of Ruth’s hundredth birthday: I’ve come a long way, and we have, too. Thank you for slowing your pace to walk beside me on this last part of the road. Thank you for helping me tell my story, and for sharing some of yours. I’m the Country Girl, and you are City Lights, but we’re the same in many ways. I think we make a darn good team. va l e r i e [ gently takes Ruth’s hand ] I think so too. Thank you for letting me share your life—it’s been an amazing trip so far. I wonder what is next for us? Let’s help each other write the next chapter. ruth

It’s 3:22 on a Friday afternoon, and it’s raining again. The office smells like burned coffee, the computers continue to go down, and my desk still is piled high with papers and ASAP projects. My supervisee sits across from me. We’re eye to eye and we are dancing, but it’s a new, energetic dance. We’re learning each other’s stories, and together are building our own “tale of transition.”

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references

Burack-Weiss, Ann, and Frances Coyle Brennan. 2008. Gerontological Supervision: A Social Work Perspective in Case Management and Direct Care. 2nd ed. New York: Routledge. Council on Social Work Education. 2012. Educational Policy and Accreditation Standards. Alexandria, VA: Council on Social Work Education. Frank, Arthur. 1998. “Just Listening: Narrative and Deep Illness.” Families, Systems, and Health 16: 197–212. Hill, Douglas. 2009. Caregiver Collage. The Cleveland Clinic/Lou Ruvo Center for Brain Health and the UNLV Gerontology Program. Kinsella, Elizabeth Anne. 2006. “Professionalism.” Journal of the Canadian Association for Curriculum Studies 4: 40. McCready, Vicki, and Louise Raleigh. 2009. “Creating a Philosophy of Supervision Through Personal Narrative.” Perspectives on Administration and Supervision 19: 87–95. Miles, Siân, ed. 1986. Simone Weil: An Anthology. New York: Grove. Nazarian, Vera. 2004. Dreams of the Compass Rose. Rockville, MD: Wildside. Palmer, Parker J. 2006. “Reconnecting Who You Are With What You Do: Identity and Integrity in Teaching.” Educational Leadership 1: 40. Shulman, Lawrence. 1992. Interactional Supervision. Washington, DC: NASW Press. White, Michael. 1995. Narratives of Therapists’ Lives. New York: Norton.

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Narrative Research DISCOVE RIES IN LISTENING TO C LINI CI A N - S CH O L A R S ’ EXPERIENCES OF WORKING ACROSS TRAUMA AND LOSS



mad ely n m i lle r

Bearing witness to a trauma is, in fact, a process that includes the listener. For the testimonial process to take place, there needs to be a bonding, the intimate and total presence of an other—in the position of one who hears. Testimonies are not monologues; they cannot take place in solitude. The witnesses are talking to somebody : to somebody they have been waiting for for a long time. d o r i l a u b , “Bearing Witness or the Vicissitudes of Listening”

in August of 2008. I had just completed my first interview, and I quite intentionally chose to walk for a while before starting my travel back to New York. I needed to take in the powerful, evocative, philosophic dimensions of the conversation and the experience itself. I needed to absorb the layers of emotion and imagery I now held. The narrative had been moving, poetic. The engagement had been transfi xing. Along the way, I made a variety of notes, and as I walked, I began to realize just how deeply I had experienced the exchange. It stayed with me as I traveled, and well beyond. It is with me now, some years later, as I write. Once back to the city, I returned to the interview, hoping to stay closely engaged. I wanted to examine the text and move ahead with data analysis within the narrative research frame I had chosen. With the just-transcribed document in front of me, I decided I would simultaneously listen to the audio recording to check the transcript for accuracy. I assumed I’d have the simple task of completing one slow, focused read-through, from beginning to end, as I compared spoken words to text. Instead, as I listened to the

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recording, I was taken beyond the transcript, back to the narrative’s layered dimensions and its wider experience, deeply affected. In that close listening, I quickly noticed how open the engagement was, how evident the attunement had been, as narratives were told and received. The interchange unfolded in sync. Stories evolved gracefully. I realized, then, that I had been listening so deeply during the interview that the outside world was at a complete remove. It seemed I had taken an immersive step into a realm of vivid imagery, created by the presence of sorrow, love, loss, reflection, reverie, and the holding of the experience of the past across historical, political, and cultural frames. Dr. J had so delicately woven together the landscape of early history and later years, revisiting early life as the foundation and frame for all to come, and moving ahead over the years to extend such learning forward. Images accompanying each story became imprints of detailed, richly evoked glimpses into the past. It seemed they were so close I could reach that experience and be there in full dimension. Through deep listening, I heard much beyond the written text and its content. Complex, nuanced expression, layers of meaning and context, and the unfolding of time were instantly illuminated. The process of discovery expanded for me in all directions. I continued listening to the recording. Conversation was underway. I was stunned to hear a blaring fire truck siren, getting louder as it approached the windowed setting, softer as it sped away. I was taken aback. For me, the siren had been entirely unregistered during the interview. I had kept its piercing noise completely out of my consciousness, entirely dissociated. And Dr. J had not given even the slightest indication of the siren’s presence during the interview. These were dramatic observations. Not hearing this intrusive sound during the quiet expression of that interview highlighted the remarkable power of engagement in narration and listening, here, in the profoundly affecting context of trauma and loss. The close connection, immediacy of the issues, intensity of the landscape, and urgency of the stories were central elements of the exchange. I realized, through continuing hours of deliberate, close listening to the spoken narrative, that the meaning of what was said was determined by how it was spoken, conveyed, and expressed within the poignant interchange and within the realities of the broader social frame.

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I realized that language, expression, and relational engagement were as important as the thematic content of the text. These three elements seemed dynamically intertwined and would be instrumental in informing narrative meaning. Metaphors and leitmotifs were powerfully used, silence and voice varied across the narrative, tone and emphasis created particular meaning. Engagement was multidimensional. I made a decision, then, to incorporate ongoing listening of the audio recording into my analytic process across the study. I also needed to expand each transcript in detail to better capture the depth and dimension of the narrative. And I would need to revisit my plan for a solely thematic analysis. An expanded analysis seemed essential. t h e s t udy

My study explored the experiences of eleven pioneering clinician-scholars who had been working for decades with survivors of diverse traumas and their accompanying losses. I set out to learn what had been sustaining for these senior specialists over the years, across experiences of close engagement with individual and collective suffering as well as survival. I wanted to know what they felt supported them in continuing to make foundational contributions to the field and to society, and in continuing to work in their variety of roles with vital engagement, integrity, and coherence. These colleagues had engaged closely with survivors and their communities and had listened deeply to trauma narratives and testimonies about living through layers of violence and violation, loss, betrayal, and disruptions of attachment, which are fundamental across trauma. Each had worked across the spectrum of such realities, with survivors of relational, interpersonal traumas, such as childhood abuse, sexual assault, domestic violence, or captivity, and with those whose experiences reached across the collective social sphere to include realities of disaster, political repression, refugee and asylum-seeking experience, war, or genocide. Study participants were well acquainted with both the significant challenges and the deepening enrichment of their work. My question would invite them to consider what made it possible to move forward over the years. I had chosen these participants in the hope that they could offer reflection and a seasoned perspective, given the longevity of their specialized experience and their place in this developing field. I included those whose

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experience extended beyond significant clinical work, those recognized for early and continuing literature, and those I hoped could be conversant about their attention to the exquisite details of their work and to broader dimensions and their implications. Each was meaningfully engaged with the issues of trauma work’s inevitable, complex impact. a n a r r at i ve re s e arc h parad i g m

The complexity of the study question, the expansiveness of the accompanying issues, and the experience of participants within this territory required detailed, open, and evolving exploration of subjective and intersubjective experience, which is characteristic of qualitative research, broadly, and a narrative paradigm, specifically. I hoped to develop a textured understanding of the unique and commonly shared meanings and the particular nature of participants’experiences. I’d highlight participants’ lived experiences and socially constructed realities and recognize my own role as clinicianresearcher and active participant in this research (Andrews, Squire, and Tamboukou 2008; Maynes, Pierce, and Laslett 2008; Ribbens and Edwards 1998; Riessman 1993, 2008). Within a narrative paradigm, my approach was guided by a synthesis of narrative perspectives and principles of research, which informed the method of inquiry, the data analysis itself, and my evolving study design. These fundamental narrative elements include the notion that human experience and human discourse evolve dynamically within unfolding relational and cultural contexts, with human agency being of central importance (Ricoeur 1984). Meanings expressed within narratives are understood as located within a frame of ever-changing social, historical, political, and cultural experience, with a focus placed on the temporal, or time-unfolding, nature of human existence (Bruner 1986). Bakhtin (1981) underlines the significance of language and its expression. Bruner (1986) highlights a narrative paradigm’s openness to possibility, or being in process, and the importance of subjectivity, meaning, and multiple perspectives. Memory and reminiscence are rich and complex accompaniments. Narrative dialogue is considered to be a jointly created conversation, fully acknowledging the researcher’s place within that context and existing in moments of unfolding experience, with the past experienced at that particular time (Grele et al. 1991; Schafer 1981). As Bakhtin (1981, high-

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lighted in Irving and Young 2002) emphasizes, language is relational and dynamic, and dialogue is a shared conversation of constantly changing experience, offering life-enhancing continuity. Importantly, meaning is found in intersubjective experience. Meaning is found, too, within the social milieu (Freedman and Combs 1996; Irving and Young 2002; Schafer 1981; Spence 1982). These principles incorporate a postmodern perspective. I hoped to engage dimensions of participants’ interior experience during each interview, as the dynamic process of moving more deeply into a close reflective process with me unfolded and as their narratives became more clearly contextualized by time and place, reflecting back across their work and history and forward into the future. I expected the study experience could offer enough room for participants to consider questions of meaning and challenges to hope, among possible responses to their work, and to the realities of profound trauma and loss in the world. I believed the study experience could lend itself to the central question of what has been sustaining, and could allow consideration of its essence and of the complexity and nuance of always-evolving resourcefulness and perseverance in which participants engaged over time. n a r r at i v e s tu dy as an u nf o ld i ng pr o c e ss o f di s cove ry

In a broad sense, a narrative study can be framed as a continually unfolding process of discovery. From first engagement with a participant and the interview itself, to the close listening and reading fundamental to the analysis, and then to the writing process—and even years later, when again approaching the study—considerations and learning consistently evolve as frames change. In reference to the narrative form, Bruner (1986) notes that, in Poetics, Aristotle mentions the peripeteia, that is, the unexpected in the form of a surprise. This suggests an unexpected revelation that changes the meaning or understanding of a situation, newly informs previous thought, fi lls in or deepens dimensions occurring across the narrative process. Narrative research offers the researcher a blank canvas for a rich discovery process. One approaches such study through multiple dimensions of engagement and listening, through meaning and context, expression and affect, developmental and generational placement, and the layered realities of the social world.

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Deep listening and close reading of the first interview continued. Notes, journals, and memos documented many dimensions of study, including my own experience. I traveled to interview the second and third study participants. Each interview was dynamically expressive, distinct in form and emphasis, and quite powerful. My experience of close engagement and detailed analysis was compounded broadly. With two new transcripts, I needed to formally capture the expansive, detailed expression that was broadly informing meanings. The thematic analysis was underway, yet I wondered where I could document and consider subtle yet elemental components of the interview such as, for instance, how moments of whispering, having tears in one’s eyes, or introducing a metaphor lent meaning. Where could I note that ending a story with a slow, deep exhalation punctuated what was said? I decided to extend the study design, adding to the thematic analysis both a structural and a dialogic analysis. I would undertake a three-part examination, informed by Riessman’s (2008) consideration of these three interwoven elements of narrative study. Each part interfaced with the other two yet held its separate aspects of meaning. Through the thematic lens, I would consider narrative content and what it communicated. Through the structural lens, I would focus on the expression and language used to inform meanings. And through the dialogic lens, I would highlight the interrelationship within the interview. Broad study themes would continue to develop. The material under study included transcripts of participants’ ninetyminute interviews, the spoken narrative and recording notes, extensive documentation of a wide range of emerging study issues, participants’ publications available in the public domain, and invited personal writing of particular meaning to each participant. I considered that this design would have particular resonance as a study of participants who engaged individuals, communities, and larger arenas through listening, language, and relationship. This was one of several parallel experiences to be revealed. Through a focused, ongoing refinement of the research, I would develop themes and patterns as they emerged over time within and across narratives, and would create thematically focused findings, reflecting conver-

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gence and divergence. These findings would be presented in a macronarrative, to protect the confidentiality of each participant. The ongoing process of discovery could now be broadened. Rich content could be paired with a focus on language and voice, the interview relationship, and my role within that conversation and the extended study. my r ol e as c li ni c i an-re s e arc h e r

As a clinician and educator, I have long been engaged in work with adult survivors of diverse traumas and related losses. I also have worked with staff and organizations to support their experience of trauma-related work and have a broad familiarity with the parameters of the study participants’ professional contexts. Thus, I have long considered the dilemmas and challenges, the evident and the subtle impact, and the deep engagement of such work. I continue to consider my own resourcefulness, my vulnerability, and my always deepening connection with the human experience of suffering and survival. My experiences in the field, and my reflections on the experience of bearing witness to such realities for those living through trauma and its losses, directly informed my decision to create this narrative inquiry. I have long felt that the question of how one sustains oneself across such experience, the process of reflecting on this, and the broad, often philosophical and existential questions one asks along the way are particularly meaningful, deeply moving, and an important accompaniment to this work. So often, there is little time and space for such exploration. This study would offer a frame and a window into this process. For these reasons, I built into my research process a conscientious selfattunement and a carefully considered self-examination. This was essential to maintain awareness of the subjectivity with which I entered this research endeavor and to ensure my integrity. This was important both during the interviews and across the study, when learning of and later considering similar survivor populations and community experience, familiar clinical dilemmas, and common practice details. It was especially important when recognizing a shared perspective, discovering a similar context or time of starting this work, or when larger issues in the field or implications of trauma and loss in the world arose and were closely felt. Careful examination of my listening, interpreting, and consideration of participants’ narratives and their experiences was essential.

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This self-observation was essential, too, in the moment-to-moment engagement with participants. Through immersive listening and empathic engagement, the experience incorporated my emotional responses to each narrative in the moment and to the narratives cumulatively. It included holding, carrying, and containing the many stories, with imprinted imagery. These intersected with my own practice stories and images and what I carry forward from them and from life. I stepped into my role of accompanying participants through the emotional territory of their narratives, knowing how important it was for me to establish with participants an open, engaged context for the development of a reflective process. Creating safety and trust was not only a foundation for the unfolding narrative process, broadly, or for these narratives of trauma and loss experience, particularly. It also was a parallel need in the context of trauma and loss practice and the experience of survivors in treatment. Empathic engagement was fundamental, as listening unfolded. In considering the interview relationship, its subtlety, its centrality, and the engagement, I would place attention beyond only direct expression, to include what was infused into a more subtle engagement. For instance, I would take note of my creation of visual imagery as narratives unfolded and as a study participant invited me into childhood or adolescence and across the landscape of their work, life, and the world. My subjectivities and those of participants intersected, creating co-constructed narratives. I entered each interview aware of myself as a clinician familiar with trauma and loss work and in the role of researcher. Clarity of this identity was important throughout the process, and it informed my approach to listening and conceptualizing, to analysis and production of the study narrative. I hoped it would allow study participants to develop trust; to feel understood, heard, cared for, and safe; and to engage. When I first invited participants to consider the study, I sent a brief summary of my work in the field, situating myself in relation to them and establishing a shared language, frame of experience, and ongoing commitment. Yet I greatly respected and carefully maintained the boundaries of my professional researcher role throughout the extended research process, offering participants safety, clarity, and focus on the issues. There were times, though, when I wished to reach out and would have otherwise extended myself, such as when I was leaving an interview or, later, when I wondered about a participant’s experience of the exchange as time went by.

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I was aware that the interior experiencing of past to present to future had been deeply felt, and I wondered about further explorations, reflections, return to memory, and reminiscence. What else were they discovering? for ma l and i nf o rm al d i s c ove ry a n d l e a r n in g

From the start of this study, the process of discovery continued to unfold in several dimensions: early on, through the interview; further deepening during analysis; expanding beyond that while writing. And I continue to learn much now, as I revisit the study from yet a new vantage point and context to write this chapter. One aspect of learning evolved through the deeply thoughtful, emotionally expressive interview narratives, as a set of rich, detailed study findings, themes, and subthemes was discerned. Importantly, another set of learning also developed. This took place beyond the formal research expectations and included the process, my experience, the interview itself, my research relationship with participants, and the evident necessity for each participant to tell their story. This learning also included the realization, framing this narrative inquiry like all others, that new dimensions, considerations, and perspectives will continue to be revealed over time. s t udy fi n d i ng s

In the responses to my question about what sustained these clinicianscholar specialists over the decades of their work, four broad, overarching themes were discerned. Participants indicated being sustained by telling in detail, to an engaged other, the story of their uniquely evolving specialized work and its contexts across the decades; engaging in connection, including with close others who deeply understand their experience; striving to find community with like-minded colleagues; and developing continuity into the future through creative, generative engagements, from teaching, mentoring, and writing to uniquely determined social engagement. They carried with them a deepened perspective on the human experience of survival. Several intersecting issues offered additional insight into what was sustaining. These included relational engagement, a sense of agency, the meaning of one’s work, and an enduring commitment to working in relation to the issues of trauma and loss in the world. These were infused with broad social justice commitments. Certainly, these were consistent with

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long-established recommendations with regard to vicarious trauma, other indirect trauma, and social support needs—for instance, ongoing collegial support, continuing learning, and reflective self-care. Yet the study extended well beyond these and the significant frameworks detailing the cumulative effect on clinicians of such trauma and loss work. The study offered richly nuanced and textured dimensions of experience particular to these seasoned clinician-scholar trauma and loss specialists. Participants appreciated an opportunity to tell their stories, to be listened to, and to be heard. They revealed a confluence of influences in their work and lives, and they spoke of how listening to the stories and suffering of their very first clients was a central experience for them, within the particular context of their times. They underlined how, through that listening and engagement, they learned what was essential. They spoke of their clinical and theoretical evolution and its inclusion in the evolution of their identity. And they spoke about realizing the complex, inevitable effect that their close engagement with survivors and communities would have on them. In identifying the significance of close engagement with deeply understanding others, they spoke of the meaning of their relationships with clients; the restorative experience of the arts, beauty, and nature; an attuned relationship with oneself; and the profound meaning of their work. And, in revealing their striving for community among like-minded others, particularly colleagues, they spoke not only of support and collaboration but also of disappointment. As they revealed the importance of continuity, they highlighted the foundational and enduring principles of trauma and loss practice and conceptualizations within an ever-evolving field, underlining relationship, clients’ experiences, relational dynamics, trauma dynamics, and finding perspective. The creation of literature, teaching, mentoring, and collaborating all underscored their consideration of the future. They held room to ask difficult questions about the relational and world realities around them, and they held on to the seemingly contradictory realities of hope and despair in the world. Social justice engagement was also essential. my di s cove ry p ro c e s s b e yo nd s tudy fin din gs

The opening that occurred as I listened to the recording of my first interview, at that moment of illuminating discovery, also led to a continuing, expan-

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sive, enriching process across the study and through my experience today, situated beyond the formal research findings. By offering rich dimension and wide possibility, deepening my experience and broadening my perspective, this discovery process has taken the study beyond its expected parameters. Within the broader frame of relational engagement emphasized throughout this chapter, and contributing to new and long-considered learning, three points of discovery are highlighted: the relational frame of the interview, including discussion of the intimate experience of the engagement, which extends, in its absence, beyond the interview itself; immersive listening; and further considerations of the telling of the story. t h e r e l ati o nal f ram e o f th e i nt e rv ie w

Discovery about the relational frame of the interview seemed especially informative. This included considerations about the frame itself and about the frame holding relational engagement. Having considered the dynamic, relational context of the interview a centerpiece and foundation, much like other contexts of engagement, I became more aware of how deeply engaged I became through voice, visual imagery, the affect and emotion participants expressed, and the issues of loss woven through each narrative and across narratives. What was spoken between each participant and me was accompanied by what was not put into voice but was experienced. These were elements of the intersubjective landscape, the setting for development of meaning, and a significant aspect of the narrative construction. It seemed that my presence, almost more than my questions, guided the interviews forward. Through this process, I deepened my learning about— and became more focused on—how meaning is developed in the experience of the engagement as well as in the conversation, through the subtle unfolding of expression. A related discovery became evident during this writing. I realized that the frame of the interview had particular significance for those working in the context of trauma and loss. It echoed the context of connection and engagement needed by survivors of both relational and collective trauma. For survivors in treatment and for community contexts alike, such connections and engagements are essential responses to the disruptions to attachments and bonds, and the discontinuities of experiencing self, others, and the world, after trauma and loss. In effect, the interview itself

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offered participants a frame for a deep and profoundly felt experience, perhaps a restorative process. The need for each participant to engage with an understanding other to evolve their story forward, and to become situated precisely, was further revealed. This may have included an opportunity to express efforts toward hope and future within the human relationship. For me, these discoveries add a broad coherence to this study. As participants considered the study questions, each was weaving a unique narrative and also was engaged in an interior process. Many identified that, through the interview, they had learned unexpected aspects about their experience, their feeling compelled to do this work, their process of moving forward, and their need to tell to an understanding other about the challenges and aloneness of their evolving experience and about their perseverance. Some achieved deeper recognition of the emotion and meaning they held in relation to loss. All brought emotion to their thoughts of world suffering and to moments of hope. The significance of the surrounding influences in participants’ lives was a related discovery. I deepened my consideration of the meaning of such broader social contexts and their intersections. Both then and early on, there were many such considerations, including where a participant was located in his or her life, life course, or career; where he or she was in the field of mental health broadly, and in the field of trauma and loss, specifically; the history of his or her role; his or her theoretical perspective on trauma and loss and how it had evolved; and the geopolitical and historical context of the interview, now, and its references to the past. Quite importantly, many participants had entered the field with a precise generational context of social change, the woman’s movement, war, or protest. Experiences of alienation, developmental placement, and listening to relational and global suffering were essential. They had intersecting and deeply informed commitments to these issues and to this work. Certainly, each brought a history with them, including early loss of one or many family members, childhood illness, later violation, or the often unspeakable experiences of war and genocide. I became aware, too, of just how intimate each engagement, each interview, had been. As rapport was established, a door opened, an atmosphere was revealed, and close sharing with me, at that moment in time, unfolded. Engagement held what was spoken and unspoken, what was felt, what was not otherwise expressed, what was understood. It incorporated witnessing

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participants’ early and later histories, their clients, world tragedy. An intensity or a sadness might accompany the interchange, with an effect on both participant and me. Participants shared what was most challenging, most moving, most heartbreaking in their work. They spoke, for instance, of clients’ hopelessness or loss of faith in the goodness of others and the world, or of participants’ own sadness at the profoundly difficult lives, despite valiant efforts, of their clients. They spoke of the importance of holding existential questions, which often had no answers. They spoke about holding the dialectic—that is, carrying the coexistence of optimism and pessimism, hopefulness and despair, as intersecting experience, held in a dynamic balance, unique to each, changing across context and time, and an aspect of human experience. Such sharing was deeply felt, deeply expressed in the protected experience of the interview, and deeply received. Through the understated urgency of creating a trauma narrative, or the striving to create coherence in one’s life as well as in one’s work experience or to progress through an exploration or a review, participants openly shared reflection and emotion with a trusted other. Related to this, I also discovered an essential dilemma. I wondered how I could protect the intimate sharing of particular moments within participants’ narratives when, at the same time, I hoped to capture that individual’s nuanced expressions as they informed meaning and the study findings. I wondered how I could deeply respect a finely articulated moment that had been shared when the participant was most vulnerable, most open, when the wider audience beyond the moment was not considered. On occasion, for instance, a participant shared a carefully held memory, a delicately considered image, or a softly expressed phrase spoken by an adored or lost loved one decades before. Perhaps they expressed a remembered metaphor about being a child and losing the world and one’s hopefulness in the face of despair, or recounted their grief about the unexpected death of a client whose dignity in life was profoundly affecting. Such articulations may have been made in a whisper, with tears, or with other subtle yet deeply expressive emotional punctuation. Such intimate sharing with me, at that moment in time in the interview and within the broader discussion at hand, was made in its particular surroundings and atmosphere. Given the deep impact such expressions had on my experience at the time, and my clear memory of those moments within each interview, I could not dismiss the importance of such experience. Yet I was concerned

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about sharing such expressions. The issues of translating the intimate and private into public expression—private versus public representation—were important to me. Gready (2008) and others (Ribbens and Edwards 1998) speak of the public life of private narratives, of the safe space and particular experience of the delivery, and of the sometimes unsafe experience of public exposure. They ask important questions about the respectful translation of private, protected, intensely felt narratives into the public domain of research. I felt a unique responsibility in making these decisions. I needed to respect a participant’s experience of the relationship and their sharing in the intimacy of a conversation’s stillness, or its cushion for sharing a treasured, never before unguarded connection to a lost loved one. There were times when I carefully chose not to include such expressions. I came to realize that the closely felt interview relationship was ongoing. It continued after the interview ended—through each listening to the spoken word, as articulation and tone were considered; through each reading of the text, as meaning was examined; and through my developing familiarity with details of expression, language, and affect. In the absence of that participant, it remained an evolving engagement and connection. Through a focus on voice and exact language, there was a closeness and an intimacy. Both the interview and the process of analysis were close settings of engagement, immersive listening, and continuing connection. i mmer s i v e li s te ni ng

The experience of listening, and especially immersive listening, was fundamental to this study and central to this parallel discovery process for me. The broad experience of listening was already a focus in my practice with survivors and a featured aspect of my related teaching. As the complexity and dimensions of immersive listening were revealed during the unfolding study process, my understanding extended. I realized that it was through intense, immersive listening during each interview that I had become so engaged with participants, able to consider the depth and breadth of meanings expressed across interviews, through engagement, during study analysis, and in my own considerations. As a clinician listening deeply to details and nuances of expression, affect, meaning, and the particularity of a conversation, specifically in the

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context of trauma and loss and its complex dynamics after disruption and disconnection, I considered listening to be a significant component, integrally intersecting with relational engagement. Of course, the subjectivity of my listening and my estimation of what is most meaningful moves through this study. Discovery of the power of narrative listening as a highly immersive experience for participant and researcher alike, particularly when reflection across life, work, and ideas is in process, is quite moving, particularly as this is framed by the dynamic and often relentless realities of trauma and loss in the world. Responsive listening and engagement extended beyond how a question was asked and directly answered to how I listened to questions being taken in, being considered, and being answered, or not. Listening responsively also included details of attunement, connection to relational engagement, listening through presence, quietness, pacing, nodding, unspoken expression. And responsive listening, I hoped, could create enough safety and room for participants to take initiative for their own exploration and openness, to come to their imagination, to be with their experience deeply, to reflect searchingly. For me, immersive listening meant focusing on the engagement with such intense attention toward the narrative and its deeply felt experience that awareness of outside realities was a distance away, unheard and unexperienced. I had been transported across time, history, cultural context. And the power of that narrative immersion created ready imagery of the experience in visual translation. Voice and emotion were central while I was listening to the audio recording, and they created an immediate movement back into the interview atmosphere. Immersive listening included my listening to history, to the stepping into memory, and, in distinction, my listening to the process of reflection. As a researcher, listening to narratives on several levels was not so different from clinical listening, including attention given to the unspoken, and silence. t e l l i n g t h e s to ry

The need for participants to first tell the story of their experience of early and evolving work, framed within its historical, political, cultural, generational, and developmental contexts, before moving toward the study question, was important enough to be situated as the first study finding in my

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research project. Participants’ need to tell their story extending across the significant challenges of their work, and in relation to the unique experiences brought to their work, seemed essential, and they evolved each narrative from the point of most meaning for them, where their influences began, and the interconnections along the way. Family, home, world tragedy, camaraderie, and the intersection of loss were woven through the narratives. What is especially interesting here is that the importance of being understood was notable both within the interview experience and in the narratives. It was important that participants were telling the story to someone who could “get it” and had a deep understanding, someone who could hear it. Parallels among participants, other clinicians working across trauma and loss, and survivors of trauma were evident. The focus on needing to tell their story illustrates to other therapists that, given the weight of their work, their containing, absorbing, and holding so much, their own survival requires that they tell their story over time, in its particular context, and, importantly, in relation to a trusted other or others. This was revealed over and over in both unique and common ways. Participants needed their particular life trajectories to reflect their exact situation in their time and place. Expression illustrated the historical movement out of isolation, early on and even now, and into connection. Several elements of telling the story that are particularly meaningful after experiences of trauma and loss include the need to create a level of coherence after the characteristic experience of a discontinuity of experience and a disruption of attachment. This telling of the story was an effort to create a sense of continuity, to weave a story forward and to extend it back to its origins, to develop a thread unfolding across profoundly affecting experience. This is illustrated by these senior clinician-scholars, and it extends to other clinicians as well as to survivors of trauma and loss. The process of developing a reflective narrative may also be framed, for these individuals, by their current developmental placement in their lives, in their profession, and in the particular fields of trauma and loss, where reflectively creating a trauma narrative or a broad review is a natural consideration, a natural generational experience. This newly considered element of participants’ need to tell, related to their developmental, generational placement now, in their current lives, may be a consideration for me. Might their exact moment in time, after

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decades of work, open up this need for detailed reflection and careful review? And might the importance of this resonate for me, too? Such important realities of social context can become additional frames for telling this story as a look back and a look forward, as a review, a reflection, and a consideration of past, present, and future in dynamic interplay. r e fl ect i ng o n th e s tu dy ’s i m pac t

As a researcher, I realize that I, too, need to tell this story of discovery. I need to express the deeply felt experience of listening to this study’s profoundly affecting narratives, experiencing the close connection with participants, and recognizing that such resonance evokes my own evolution of absorbing the depth of trauma and loss work. Another parallel is revealed in this study process. Bearing witness to participants’ narratives was deeply moving, powerfully affecting. Listening to emotion, experience, and history, in one sense, was listening to a testimony—a detailed, personal account across historical, developmental experiences, told to an engaged other offering close accompaniment. Although I brought a clinician’s perspective of listening on many levels, several components of the interviews, uniquely and cumulatively, were most affecting to me as a researcher. Participants carried layers of experience and affect, including the textured, expansive realities of survivor clients, communities, and societies; the engagements and impact of their intimate and long-standing work with survivors; and their own lives and professional contexts. I, too, experienced participants’ survivor clients and communities in their full atmospheres of trauma and loss, from relational violations to those within broader geopolitical contexts and world arenas. And I experienced the enduring meaning of those relationships for participants. These intersected with my experiences of trauma and losswork over the years, my life experience, and transgenerational expressions of trauma and loss. My own family’s narratives across the generations—of fleeing persecution, of running for one’s life, of escaping violation and danger in Eastern Europe—were quietly revealed to me during my early years, with understated yet remarkable emotion. Although the details were often faintly expressed, they nonetheless became vivid pictures. When shared directly, each story was revered, each relative loved. Their lives were told across time, place, and

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history and included dimensions of displacement, of leaving everyone and all one has known, of starting anew. They became historical imprints for me of lives lived. And they were deeply affecting glimpses of loss. I listened carefully, sometimes to a nearly unspoken yet deeply expressed vocabulary of loss, yet within a context of connection, of vitality. I watched expressions, gestures, to learn how this touched others, what was meant, what was carried forward. Other stories of loss in closer generations—of a child so young and lively, told gently, with affection—broadened my learning about loss in the context of trauma. Such experience was a foundation for listening. And loss was not to be forgotten but to be held within the contours of living life. It was an element of life and living. These formative experiences were infused into my personal and professional being; informed my sensibilities, my considerations; contributed to immersive listening, to sensing loss in the context of trauma, to attunement to relational experience, to engaging openly in a process of discovery. It was not unusual to carry so much. Researchers and trauma specialists acknowledge the impact on the investigator whose study is informed by stories of trauma. Riessman (1993) states that the researcher of trauma narratives also bears witness. Herman (1992) also identifies the clinician’s experience with survivors as a relationship of witnessing, and this witnessing as an act of solidarity with survivors. This can extend to the clinician-researcher’s own experience as parallels come to light. Laub (1992) discusses the testimony relationship with the listener, who bears witness and makes possible human relatedness and survival through relational connection. Lifton (2011) identifies the relational aspect of witnessing and the profoundly felt “special knowledge” that is developed through bearing witness. And Agger (1994) and Agger and Jensen (1990, 1994, 1996), referencing their research, acknowledge the inevitable impact on the trauma researcher. Within the intimate context of the interview relationship, uniquely unfolding articulation and expression occurred. Narrative references to early years, remembered conversations, or deeply protected emotions were expressed in that particular evolving context, at that time, to me, while holding a body of clinical and community experience. I absorbed articulated as well as unarticulated affect, and held imagery, reference, and association. I held, too, participants’ widest considerations of the implications of trauma and loss in the world. And although they were not identified

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directly but were certainly held, there were moments of sorrow, vulnerability, and the realm of the intentionality of violation, atrocity, and horror not far from the discussion, along with remarkable agency, initiative, and participants’ deepest commitments. The dynamic intersection and subtle elements of vicarious trauma and vicarious resilience were an inevitable accompaniment. I am certain that my close engagement with this research endeavor will remain active beyond its end point. I will continue to hold these narratives and the close engagement and trust shared so openly, so generously, as these stories were told. I will carry them with me, deeply. a s t h i s s to ry o f d i s c ove ry e nd s fo r n ow

This chapter began with the pivotal moment of an unexpected discovery, as my narrative research study was just moving forward. From that point on, discovery and learning were infused into the unfolding process. Inclusive of formal research findings and additional learning about the process and frame of the experience, like all narrative analysis and interpretation, this process of discovery can be understood as ongoing, always able to be newly considered in an ever-changing frame. There exist ample opportunities to continue to find new meanings in a broader perspective, to consider deeper layers of understanding, to see it through another lens, to consider additional issues within emerging contexts. Because narrative study is always in process, discovery will continually unfold, and possibilities will be limitless. Across layers of meaning and evolving social contexts, this narrative study is a point in time, and it will move ahead later, beyond its immediate place and placement. As I approach this end of consideration and study, it too is truly a particular moment in time. My analysis and reflection will continue again, cumulatively, when the text and voice, reflection and impact are next considered. I will take with me this expanded, deepened awareness and perspective of narrative expression and engagement and its layers of detailed meaning. Through this narrative experience of research, participants’ voices and narratives have come alive in the many dimensions of human communication. Through continuing listening and engagement, further explorations of participants’ contributions to deepening an understanding of human experience and its continuity will unfold.

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references

Agger, Inger. 1994. The Blue Room: Trauma and Testimony Among Refugee Women—A Psycho-Social Exploration. Trans. M. Bille. London: Zed Books. Agger, Inger, and Soren B. Jensen. 1990. “Testimony as Ritual and Evidence in Psychotherapy for Political Refugees.” Journal of Traumatic Stress 3 (1): 115–130. ——. 1994. “Determinant Factors for Countertransference Reactions Under State Terrorism.” In Countertransference in the Treatment of PTSD, ed. John P. Wilson and Jacob D. Lindy, 263–287. New York: Guilford. ——. 1996. Trauma and Healing Under State Terrorism. London: Zed Books. Andrews, Molly, Corinne Squire, and Maria Tamboukou, eds. 2008. Doing Narrative Research. Los Angeles: Sage. Bakhtin, Mikhail M. 1981. The Dialogic Imagination: Four Essays. Ed. Michael Holmquist. Trans. Caryl Emerson and Michael Holmquist. Austin: University of Texas Press. Bruner, Jerome S. 1986. Actual Minds, Possible Worlds. Cambridge, MA: Harvard University Press. Freedman, Jill, and Gene Combs. 1996. “The Narrative Metaphor and Social Constructionism: A Postmodern Worldview.” In Narrative Therapy: The Social Construction of Preferred Realities, 19–41. New York: Norton. Gready, Paul. 2008. “The Public Life of Narratives: Ethics, Politics, Methods.” In Doing Narrative Research, ed. Molly Andrews, Corinne Squire, and Maria Tamboukou, 137–150. Los Angeles: Sage. Grele, Ronald J., with Studs Terkel, Jan Vansina, Dennis Tedlock, Saul Benison, and Alice Kessler Harris. 1991. “A Surmisable Variety: Interdisciplinary and Oral Testimony.” In Envelopes of Sound: The Art of Oral History, 2nd ed., 157–176. New York: Praeger. Herman, Judith. 1992. Trauma and Recovery: The Aftermath of Violence—from Domestic Abuse to Political Terror. New York: Basic Books. Irving, Allan, and Tom Young. 2002. “Paradigm for Pluralism: Mikhail Bakhtin and Social Work Practice.” Social Work 47 (1): 19–29. Laub, Dori. 1992. “Bearing Witness, or the Vicissitudes of Listening.” In Testimony: Crises of Witnessing in Literature, Psychoanalysis, and History, ed. Shoshona Felman and Dori Laub, 57–74. New York: Routledge. Lifton, Robert Jay. 2011. Witness to an Extreme Century: A Memoir. New York: Free Press.

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Maynes, Mary Jo, Jennifer Pierce, and Barbara Laslett. 2008. Telling Stories: Personal Narratives in the Social Sciences and History. Ithaca, NY: Cornell University Press. Ribbens, Jane, and Rosalind Edwards, eds. 1998. Feminist Dilemmas in Qualitative Research: Public Knowledge and Private Lives. London: Sage. Ricoeur, Paul. 1984. Time and Narrative. Vol. 1. Trans. K. McLaughlin and D. Pellauer. Chicago: University of Chicago Press. Riessman, Catherine Kohler. 1993. Narrative Analysis. Newbury Park, CA: Sage. ——. 2008. Narrative Methods for the Human Sciences. Thousand Oaks, CA: Sage. Schafer, Roy. 1981. “Narratives of the Self.” In Retelling a Life: Narration and Dialogue in Psychoanalysis, 21–35. New York: Basic Books. Spence, Donald P. 1982. “Narrative Truth and Historical Truth.” In Narrative Truth and Historical Truth: Meaning and Interpretation in Psychoanalysis, 279–305. New York: Norton.

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Reading and Writing Really Are Fundamental H OW STORIES SHAP E P ROFESSIONAL D E V E LO PME N T



mary s o r m a nt i

Everybody is vulnerable at every stage of their lives; everybody is subject to illness, accident, personal tragedy, political and economic reality. This doesn’t mean that people aren’t also resilient and resourceful. Bearing other people’s vulnerability—which means sharing in it imaginatively and practically without needing to get rid of it, to yank people out of it—entails being able to hear one’s own. Indeed it would be realistic to say that what we have in common is our vulnerability; it is the medium of contact between us, what we most fundamentally recognize in each other. a d a m p h i l i p s a n d b a r b a r a tay l o r , On Kindness

of direct practice experience, I understand that communication is essential to health and well-being. Time and again, across diverse service settings, situations, and relationships, I have observed that the needs and responsibilities associated with telling and listening are always at the core of clinical work, the keys to its successes and failures. My education about the power of telling and listening, however, began long before I embarked on my social work career and long before I realized that there is a growing body of neuroscience data that supports and explains my observations. Like many children, I was exposed to stories in a variety of ways. Initially, I listened to the stories in books that were read aloud to me by family members, teachers, babysitters, and library staff. Later, I read independently the stories conveyed in both the illustrations and the words of books

as a social worker with many years

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whose titles or covers piqued my curiosity. Most of these stories featured fictional characters engaged in mainly ordinary and sometimes heroic pursuits. Among my favorites were Veronica, a hippopotamus with wanderlust; Madeline, an impish trailblazer who loved her dog fiercely, shrugged off a growling tiger, and proudly displayed the scar marking the site of her appendectomy; and Harriet, a sassy, eccentric, sharp-eyed loner who recorded her daily observations in a “spy notebook.” Although I knew I could never meet Veronica, Madeline, or Harriet in person, I also understood that many of their experiences were far from imaginary. Moreover, through their stories, I was able to discern the connections among thoughts, feelings, and actions and to observe their effects from a position of relative safety. I was, for example, both aghast at the theft of Harriet’s notebook and greatly relieved that my own privacy had never been similarly or otherwise violated. Before long, I discovered that the stories of real people were at least as captivating as those of any protagonist I’d been introduced to previously. At age fourteen, after being drawn in by the evocatively titled The Private Worlds of Dying Children, Myra Bluebond-Langner’s (1978) account of the stories she heard while working with and studying children with cancer, I also realized that stories about real people can be more inspiring than fiction. In their co-constructed accounts, Bluebond-Langner and the children she worked with gave me access to new experiences that expanded my outlook on the world and its possibilities, some frightening and others inspiring. By the time I finished reading the book, I was convinced that my own career (far off as it then seemed) should include work with children like those described in the book. Within a decade, the children and families I began working with as a pediatric oncology social worker gave me an even richer and more nuanced understanding of life’s complexities and of the mutually beneficial ways in which people can engage with one another. Like many novice service professionals, I had gained important knowledge and skills in the classroom but I learned even more from repeated and increasingly successful attempts to apply these in real, unscripted clinical situations. Moreover, what I had suspected and even feared, as a social work intern, I learned to be true, as a newly minted professional with a master’s in social work: thinking about how a conversation with a young man who has just been diagnosed with leukemia might unfold is quite different

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from having that conversation. I hadn’t, though, been able to fully envision either the range of stories that might emerge within such conversations or their profundity, both of which became evident within weeks of beginning my first job in psychosocial oncology. In the ensuing years, I became increasingly comfortable and adept at inviting people to talk about the often powerful thoughts and feelings surrounding their own or a loved one’s diagnosis of cancer, and then listening to their responses. Simultaneously, my understanding of people’s life stories continued to grow. I learned, for example, that stories—even a single story—are told and heard in many ways and affect both tellers and listeners. Perhaps ironically, however, it was my departure from this career, which I had been inspired by stories to seek, that led me to explore the intersections of stories, health, and health care more fully. In this chapter, I will elaborate on the knowledge I’ve gained from and about stories, both during and after my transition from direct practice in psychosocial oncology to a social work faculty position; explain how I incorporated this knowledge into the courses I teach to MSW students specializing in the health, mental health, and disabilities field of clinical practice, and what I learned from the process; and describe related scholarship about interprofessional education and collaborative practice, which have relevance for social workers. l e a r n i n g f ro m and ab o u t s to ri e s

The years I spent working in the specialty area of psychosocial oncology remain high points in my career. At the time, I counted myself among the fortunate who had found not only work they loved and were well suited for but also great organizations in which to do that work. Even many years after making the difficult decision to transition into academia, my appreciation for those early career experiences remains vast. My changed affi liation and the passage of time, however, also led to some unsettling realizations. Despite our provision of first-rate care, the interprofessional health care delivery teams I was part of had not, I believe, operated up to their optimal collective potential. Even more disquieting was the recognition that, as a member of those teams, I was partially, albeit unwittingly, responsible for this failure. Moreover, my professional training had predisposed me to think and act in ways that may have under-

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mined the collaborative spirit of team-based care that I so enjoyed. For example, I held preconceived notions about other professional disciplines and possessed a robust sense of pride in my own; this sometimes contributed to tension between team members and very likely limited my openness to learning from my non–social work colleagues. Without realizing it, I had been indoctrinated into a professional silo and had neither the training nor the professional maturity to transcend it. When, finally, I began to understand these dynamics, teaching was the most accessible mechanism for me to redress those previous professional missteps. I resolved to devote more attention in my courses to the topic of interprofessional practice and to deepen my own and my students’ critical thinking about the factors that shape it. Several years ago, an advertisement about the launch of a master’s-level Program in Narrative Medicine at Columbia University caught enough of my attention that I decided to attend an information session about the program. While listening to Executive Director Rita Charon’s opening remarks about the program’s mission to facilitate an active exchange of ideas about health and health care among professionals from a broad array of disciplines and practices, I experienced an immediate and visceral spark of recognition and inspiration. Charon’s ideas about stories were at once deeply familiar and intellectually stimulating. Within days, I had started the program’s application process and, within months, was a member of its inaugural class. As I had anticipated, the program’s courses and related activities confirmed my abiding belief that the value of stories extends far beyond entertainment and provided me with a new framework for understanding their applications within the broad field of health care. The program not only invigorated my ideas about health care delivery but also, in turn, shaped my ongoing efforts to be mindful and creative about my pedagogy with social work students. Although I have always included humanities texts (including fi lms, poems, novels, and memoirs) among my course materials and have always required students to think critically about the ways in which power and privilege might shape their content, explicit and implied objectives, narration/ authorship, audience, and publication outlet or context, I did so largely in isolation (without the collaboration of colleagues) and without even a rudimentary understanding of literary theory or criticism. The narrative

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medicine program gave me this grounding, and it emphasized the development of narrative competence, which Charon (2007, 1265) contends is “the capacity to recognize, absorb, metabolize, interpret, and be moved by stories,” as requisite to the provision of effective clinical care. Furthermore, the sequenced acts of close reading of literary and other texts, reflective writing about those texts, and shared reading and contemplation of those writings, which are key elements of narrative competence, figured prominently in the program and enriched my thinking about clinical work. u s i n g s to ri e s wi th s o c i al wo rk st ude n ts

I began to use close reading and reflective writing more routinely in my classes and brought a narrative sensibility into all aspects of my teaching. For example, during the fi rst class meeting of my social work practice courses, I engage students in a simple activity that underscores the notions that people are “multistoried” and that stories are multilayered. I lead into the activity by letting students know that, because we’ll be working together for a number of months, I believe it is important for us to start by getting to know one another. I go first, focusing initially on the educational and professional achievements that one might discover on my university Web page. I tell the students where I went to undergraduate and graduate school, when I started teaching at the university, and what type of social work practice I’ve done. Then I pause and tell them that, although everything I’ve just told them is both accurate and relevant to my professional work and roles, it does not provide them with a full description of who I am. I pause again, implicitly encouraging them to spend a few moments considering that point. Then I resume my introduction and “thicken” the description of myself I’d just provided moments earlier. I tell them I’m the mother of a school-age son and the legal guardian of a teenage niece. I tell them I have a motorcycle license, and though I haven’t ridden a motorcycle since my son was born, I hope to do so again one day. I tell them that I failed organic chemistry during my freshman year of college, that I’m certified with the National Bartenders Association, and that my brother died very suddenly nearly twenty years ago and I still grieve his absence.

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As some of their eyes widen, I tell them they now have a slightly fuller sense of who I am, but I emphasize that, even with the additional information that I have chosen to share, there is still much more they don’t know about me. I also suggest that this is likely true, to some extent, in all relationships, perhaps especially in the relationship between a professional service provider and a recipient of that service. How I proceed from this point may vary somewhat, depending upon any number of contextual factors, including, for example, students’ level of engagement. Sometimes I invite the students to share any thoughts, feelings, or questions elicited by my introduction and related comments. Sometimes I ask the students to delve into my supposition that professionals, including social workers, know relatively little about the individuals receiving their services. Do they, for example, have any thoughts about why this might be the case? Whether it occurs before or after a discussion such as this one, I always follow my own introduction with a request that the students introduce themselves to one another and to me. Specifically, I ask them to write a brief “autobiography” that includes a layer (or two) that many of their casual acquaintances or coworkers don’t know about them, which they will subsequently read aloud to a small group of two or three classmates. Students also understand that the maximum allowed writing time is three minutes, which I monitor. When these steps are completed, I facilitate a full-class discussion about their experiences of writing and reading aloud their autobiographies as well as of listening to those of others. If certain issues I believe to be important do not arise spontaneously in this discussion, I prompt the students to consider them. For example, I might ask whether any of the information in others’ autobiographies, including mine, surprised them, and if so, why they think that was the case. Had they made inferences or assumptions about their classmates before hearing their autobiographies? Had what they heard challenged any preconceived notions about a particular person or role (such as “professor”)? Regardless of their answers, I caution them to pay close attention to their thinking, which could quite easily lead them to make unjustified inferences and assumptions about others, especially when their knowledge about those others is bound to be limited. I propose that such thinking, especially when codified in the form of professional assessments and diagnoses, may

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present incomplete, vague, or misleading depictions of the people we serve. Moreover, such thinking may also skew their sense of themselves and their colleagues. In subsequent class sessions, listening to and telling stories remains a central focus. Each week, I bring the stories of health care providers and recipients into the classroom through shared viewing of documentary fi lm or by reading aloud from one or more written texts (for instance, poems or personal essays). Afterward, I always include time for independent and group analysis of the chosen texts, as well as a reflective writing activity and related discussion. A sampling of texts I have used in the past several years includes: • •

• •

•

•

“Dis-ease” (Piercy 1983), a poem; “Stopping to Smile on the Way to Sadness” (Brown 2010), a newspaper essay; “Being Mickey’s Doctor” (Mohrmann 2005), a book chapter; The Way We Die: Listening to the Terminally Ill (Mednick 1995), a documentary fi lm; 56 Ways of Saying I Don’t Remember (Berliner 2013), a documentary short; and Stanley (Achtenberg and Mitchell 2002), a documentary fi lm.

In my experience, most students have been very open to participating in these activities and discussing their relevance to social work practice. Some have told me that, before taking my class, they had considered the ways in which literature and film might be used with people facing health or disability-related struggles. The reactions of some (such as enthusiastic nodding) gave me the impression that, like me, they intuitively knew and believed in the vast power of stories and were pleased to take a course with an instructor who integrated them into her teaching. The students who appeared to struggle with or doubt the relevance of these activities generally did so when the text I introduced was a poem. As a result, I began to routinely read aloud the following description of the genre, offered by Holmes and Gregory (1998, 1192), followed by an appeal for students to engage with the activities as openly as possible. Poetry is an inexhaustible expression of our experience  .  .  . a window of ever-changing consciousness through which writers and readers see the

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ever-changing world. As poets look through this window of their world, they take notice of images that they or others might have missed or ignored; they capture everyday observations or occurrences. Poets also take notice of experiences that are difficult and complex to articulate. In their habitual or inexpressible existence, experiences become worn and hidden.  .  .  . Poets see what others ignore or cannot fi nd the words to adequately express.

Finally, even though I did not initially foresee that my use of narrative activities in the classroom might facilitate students’ understanding and appreciation of interprofessional practice, I did come to recognize that potential. The following segments from the final reflective papers of several students reveal that they did, as well. Although I am an empathic person, I can struggle to remain fully present with patients, clogging up my listening with interpretation, assessment, and my own agenda. I realize now that this is a deflection on my part—by intellectualizing and rationalizing the patient’s story, I inherently take myself outside of the moment. Arthur Frank (1998) hits this point home for me: “Stories that are shared among persons can open mutual relationships; narrative reduced to clinical technique may or may not be an improvement over biomedical reductionism” (p. 199). . . . I know that I have the potential to be a remarkable listener, but it will take me trusting myself, fully embodying the person that I am before I am able to listen deeply as a regular part of my clinical practice. I understand now that I must pay closer attention to myself, and must be more forgiving. In the words of Frank, by caring for myself, I am able to cultivate a “mutual knowing” with the person telling his or her story. Due to the knowledge that I garnered from the coursework and class, I was able to advocate for a support group for the medical staff in the pediatric intensive care unit where I was placed because I knew the need for an emotional outlet was so great. My purpose behind the support group was to normalize the idea of talking about death and dying in the hospital—a subject that is ironically taboo to discuss for the medical team. Five patients had died within a month in my unit and the level of inhumane side comments, passive aggressive tones, and blaming spread throughout the unit was pervasive. Th rough the literature we read in this class I was able to

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recognize the signs and symptoms of vicarious trauma, and was able to provide psycho-education for the medical team . . . a safe space for the medical team to disclose their true feelings and emotions was necessary for them to decompress and constructively clear out all of the shame and guilt that resided within their consciences. This course has forced me to take a second look at the multifaceted role of the social worker in a medical setting. Before, I would often vilify doctors as arrogant and inhumane. As corny as this may seem, I now understand that it is the doctors’ job to keep the patient’s heart beating, and it is the job of the social worker to keep the patient’s heart from breaking. As I enter into the profession, I will remember the importance of fostering open communication across channels. It was not until taking this course that I understood I needed to take a more proactive role in facilitating open communication. So, I began compiling a list of patients’ questions to bring along to their upcoming medical appointments. In carrying out this simple task, I put patient, doctor, and myself all on the same page. I also think it provided a sense of accountability—the doctors recognized my handwriting, and so knew that I would likely follow up about the matter. . . . Doctors are not superhuman, and neither are social workers. It is paramount for doctors and social workers to come together in partnership and collaboration, merging the medical skill-set with the psychosocial. This course has taught me that I bring something truly vital to the biomedical model of care: a honed ability to listen, to understand, and to connect.

These comments suggest that shared close reading and reflective writing can contribute to social work professional development in important ways, including preparing students to value and respect the skills of colleagues from other disciplines. Specifically, I think participation in these narrative activities can raise students’ awareness and respect for the central role of empathy in professional caring, cultivate students’ respect for intentional listening as both a primary means of deepening and demonstrating empathy and the only pathway to a fuller understanding of another, heighten students’ professional curiosity and humility, facilitate their understanding that no single professional or professional discipline has the expertise to respond adequately and effectively to comprehensive health care needs,

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increase their respect for the contributions to patient care made by colleagues from professional disciplines other than their own, and sensitize them to the impact of patient care on those colleagues. i n t er p r o f e s s i o nal e d u c ati o n an d c o l l a b o r at iv e p r act i ce

My students’ comments are especially promising, given the increasingly complex health care delivery system in the United States, which is frequently characterized by fragmented services, physically and emotionally demanding work, and provider teams comprising specialists from many professional disciplines. Indeed, many health care and education leaders across the globe consider the redesign of health professionals’ education and training programs an essential step to address these and other health care challenges. Specifically, widespread implementation of interprofessional education, which occurs “when two or more professions learn about, from, and with each other to enable effective collaboration and improve health outcomes” (World Health Organization 2010, 10), and related teambased practice models are expected to strengthen health systems (Frenk et al. 2010) and improve patient care (Thistlethwaite 2012). Furthermore, although concerns about health care delivery in the United States and the ensuing recommendations for collaborative training and practice have been voiced and responded to with varying levels of intensity and support since the 1960s (Brandt et al. 2014), interprofessional education and collaborative team-based care are now priorities for a rapidly expanding network of groups and organizations. Each of the health care organizations I was employed by during the early years of my career now uses some model of interprofessional team-based training and care as a foundation for their provision of services to individuals with cancer and their families. Research about interprofessional education and collaborative practices is also growing and documents a range of positive outcomes, including increased understanding and clarity about one’s own and others’ roles within an interprofessional health care team (Darlow et al. 2015; McLeod et al. 2014; Wellmon et al. 2012); enhanced communication among providers (Vyas et al. 2012); increased family satisfaction with provider communication (Shaw et al. 2014); and improvements in clinical outcomes for individuals

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with diabetes (Barceló et al. 2010), individuals with cancer (San MartinRodriguez, D’Amour, and Leduc 2008), individuals undergoing surgery (Neily et al. 2010), women receiving obstetrics care (Pettker et al. 2009), individuals who have had strokes (Strasser et al. 2008), and residents of nursing homes (Rask et al. 2007). con cl ud i ng th o u g h ts

Throughout most of my life, I have taken vast pleasure in texts of all kinds and the stories within them. For this, I owe a debt of gratitude to many people, including those who created the texts (whether writers, filmmakers, choreographers, composers, or painters); those who interpreted them (actors, dancers, and scholars); and those who have shown, taught, and encouraged me to consider them from a new vantage point or with a newly acquired skill (including the faculty and students of Columbia University’s Program in Narrative Medicine). Collectively, these people have shown me the value of purposeful engagement with texts. From them I have learned that close attention to texts enhances listening and reflection skills and increases one’s propensity to notice and contemplate things that were previously overlooked. I’ve also learned that close attention to texts can expand one’s tolerance and appreciation for ambiguity, contradiction, and difference, thus expanding the capacity for empathy. Like me, many of my students have experienced these benefits. In turn, I have learned from them that close attention to texts also can be a means to successful interprofessional practice. I expect that our shared narrative activities have influenced not only my students’ professional development but also my own. My thanks go to them, as well. references

Achtenberg, Ben, and Christine Mitchell. 2002. Stanley. Video. Directed by Ben Achtenberg. Boston: Fanlight Productions. Barceló, Alberto, Elizabeth Cafiero, Melanie de Boer, Alejandro Escobar Mesa, Marcelina García Lopez, Rosa Aurora Jiménez, Agustín Lara Esqueda José Antonio Martinez, et al. 2010. “Using Collaborative Learning to Improve Diabetes Care and Outcomes: The VIDA Project.” Primary Care Diabetes 4 (3): 145–153.

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Berliner, Alan. 2013. “56 Ways of Saying I Don’t Remember.” New York Times, September 16. http://www.nytimes.com/2013/09/17/opinion/56-ways-of-say ing-i-dont-remember.html. Bluebond-Langner, Myra. 1978. The Private Worlds of Dying Children. Princeton, NJ: Princeton University Press. Brandt, Barbara, May Nawal Lutfiyya, Jean A. King, and Catherine Chioreso. 2014. “A Scoping Review of Interprofessional Collaborative Practice and Education Using the Lens of the Triple Aim.” Journal of Interprofessional Care 28 (5): 393–399. Brown, Theresa. 2010. “Stopping to Smile on the Way to Sadness.” New York Times, June 7. Charon, Rita. 2007. “What to Do with Stories: The Sciences of Narrative Medicine.” Canadian Family Physician 53 (8): 1265–1267. ——. 2014. “Narrative and Interprofessional Education: Writing Toward Transparency, Mutual Respect, and Trust.” Clinical Scholars Review 7 (2): 92–93. Darlow, Ben, Karen Coleman, Eileen McKinlay, Sarah Donovan, Louise Beckingsale, Ben Gray, Hazel Neser, Meredith Perry, James Stanley, and Sue Pullon. 2015. “The Positive Impact of Interprofessional Education: A Controlled Trial to Evaluate a Programme for Health Professional Students.” BMC Medical Education 15 (1): 1. Frenk, Julio, Lincoln Chen, Zulfiqar A. Bhutta, Jordan Cohen, Nigel Crisp, Timothy Evans, Harvey Fineberg, et al. 2010. “Health Professionals for a New Century: Transforming Education to Strengthen Health Systems in an Interdependent World.” Lancet 376 (9756): 1923–1958. Holmes, Vicki, and David Gregory. 1998. “Writing Poetry: A Way of Knowing Nursing.” Journal of Advanced Nursing 28 (6): 1191–1194. McLeod, Deborah, Janet Curran, Serge Dumont, Maureen White, and Grant Charles. 2014. “The Interprofessional Psychosocial Oncology Distance Education (IPODE) Project: Perceived Outcomes of an Approach to Healthcare Professional Education.” Journal of Interprofessional Care 28 (3): 254–259. Mednick, Jonathan. 1995. The Way We Die: Listening to the Terminally Ill. DVD. Directed by Jonathan Mednick and Ted Skillman. Boston: Fanlight Productions. Mohrmann, Margaret. 2005. “Being Mickey’s Doctor.” In Attending Children: A Doctor’s Education, 51–77. Washington, DC: Georgetown University Press. Neily, Julia, Peter D. Mills, Yinong Young-Xu, Brian T. Carney, Priscilla West, David H. Berger, Lisa M. Mazzia, Douglas E. Paull, and James P. Bagian. 2010.

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“Association Between Implementation of a Medical Team Training Program and Surgical Mortality.” JAMA 304 (15): 1693–1700. Pettker, Christian M., Stephen F. Thung, Errol R. Norwitz, Catalin S. Buhimschi, Cheryl A. Raab, Joshua A. Copel, Edward Kuczynski, Charles J. Lockwood, and Edmund F. Funai. 2009. “Impact of a Comprehensive Patient Safety Strategy on Obstetric Adverse Events.” American Journal of Obstetrics and Gynecology 200 (5): 492.e1–8. Philips, Adam, and Barbara Taylor. 2009. On Kindness. New York: Farrar, Straus and Giroux. Piercy, Marge. 1983. “Dis-ease.” In Stone, Paper, Knife. New York: Alfred A. Knopf. Rask, Kimberly, Patricia A. Parmelee, Jo A. Taylor, Diane Green, Holly Brown, Jonathan Hawley, Laura Schild, Harry S. Strothers, and Joseph G. Ouslander. 2007. “Implementation and Evaluation of a Nursing Home Fall Management Program.” Journal of the American Geriatrics Society 55 (3): 342–349. San Martin-Rodriguez, Leticia, Danielle D’Amour, and Nicole Leduc. 2008. “Outcomes of Interprofessional Collaboration for Hospitalized Cancer Patients.” Cancer Nursing 31 (2): E18–27. Shaw, David J., Judy E. Davidson, Renée I. Smilde, Tarane Sondoozi, and Donna Agan. 2014. “Multidisciplinary Team Training to Enhance Family Communication in the ICU.” Critical Care Medicine 42 (2): 265–271. Strasser, Dale C., Judith A. Falconer, Alan B. Stevens, Jay M. Uomoto, Jeph Herrin, Susan E. Bowen, and Andrea B. Burridge. 2008. “Team Training and Stroke Rehabilitation Outcomes: A Cluster Randomized Trial.” Archives of Physical Medicine and Rehabilitation 89 (1): 10–15. Thistlethwaite, Jill. 2012. “Interprofessional Education: A Review of Context, Learning and the Research Agenda.” Medical Education 46 (1): 58–70. Vyas, Deepti, Russell McCulloh, Carla Dyer, Gretchen Gregory, and Dena Higbee. 2012. “An Interprofessional Course Using Human Patient Simulation to Teach Patient Safety and Teamwork Skills.” American Journal of Pharmaceutical Education 76 (4): 71. Wellmon, Robert, Barbara Gilin, Linda Knauss, and Margaret Inman Linn. 2012. “Changes in Student Attitudes Toward Interprofessional Learning and Collaboration Arising from a Case-Based Educational Experience.” Journal of Allied Health 41 (1): 26–34. World Health Organization. 2010. Framework for Action on Interprofessional Education and Collaborative Practice. Geneva: World Health Organization.

Conclusion ON NARRATIVE COMPETENCE AND NARRATIVE HUMILITY



an n bu r ac k-we i ss, ly nn sa r a law re nce , an d ly nne ba m at m i j a ng o s

Great narrative is an invitation to problem solving, not a lesson in problem solving. It is deeply about plight, about the road rather than about the inn to which it leads. j e r o m e b r u n e r , Actual Minds, Possible Worlds

The Power and Possibility of Story is a diverse collection, its chapters encompassing several theoretical perspectives and practice strategies. Each author moves through her own process of discovery and arrives at her own conclusion about the outcome of her endeavor. So it is legitimate for the reader to seek external measures of validation. Narrative competence is one such measure. Narrative humility is another. Professions are typically evaluated by their adherence to two criteria: a mission statement of broad guiding beliefs, and a set of standards for operationalizing them. The social work profession is guided by the National Association of Social Workers’ code of ethics and the Council on Social Work Education’s core competencies. Competence may be defined as “the ability to do something successfully or efficiently.” Indeed, measures of competence—a required base of knowledge and skills set forth in operational terms—are an integral part of evaluation in all educational and workplace settings, and the basic criteria for state licensure in all professions. Narrative practice also has a mission and specific skills. However, it is not a profession in itself. It could be described, more accurately, as a rigorous

n a r r at i v e i n s o c i a l w o r k p r a c t i c e :

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conclusion

academic discipline fit for incorporation into the practice repertoire of any helping professional who seeks to adopt it. The editors and several of the authors whose work appears in this collection are such professionals. They have honed their narrative consciousness through affi liation with the Program in Narrative Medicine at Columbia University. Narrative medicine is the most mature and codified representation of professional narrative practice to date—an apt point of departure for consideration of narrative competence and narrative humility. Its founder, Rita Charon, situates theory and practice strategies within a philosophical and humanistic perspective. The program curriculum enlarges on the base of necessary knowledge and skills. An elaboration of narrative competence appears in the foundational text Narrative Medicine: Honoring the Stories of Illness (Charon 2006, 132–151). Its components can be summarized as attention (the ability to closely attend to the story of another); representation (the ability to share what the story evokes for you); and affiliation (the ability to join with the other in empathy and common cause). This book abounds in examples of narrative competence. As we read descriptions of individuals, families, groups, supervisees, students, and research subjects, they come to life before our eyes. Such descriptions could only come from authors who had given attention to the other(s) before them, actively listening and observing, conscious of the verbal and nonverbal expressions of thought and feeling present in every encounter. Then there is representation, the writing of the chapter, in which the author coconstructs the story she was told, representing it in her own voice, aware of the ways in which her very telling is influenced by all that she brought of herself to the encounter. Finally, there is affi liation. As authors join those of whom they write, readers join authors in empathy and renewed belief in the power of telling one’s story. Narrative humility is not a challenge to narrative competence; it is an expansion of it. Per Bruner’s epigraph, narrative invites rather than lectures or solves. Humility, rooted in the Latin humilis (“low” and “of the earth”), is a grounded position of receptivity. Narrative humility signifies a “stance,” an openness to listen and learn and represent as a means of understanding. Knowing our understanding of self and others can never be complete, we try. Practicing narrative humility, a reflective and self-reflective practice (Tervalon and Murray-Garcia 1998; Das Gupta 2008; Hohman 2013), so-

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cial workers often cross real and imagined divides between helper and helped to encounter a shared humanity. There are overt indicators of narrative humility in the few chapters that deal exclusively with the author’s search for self-understanding and selfhealing, as well as in the introductions to other chapters, in which the author speaks of her own stake in the process. However, narrative humility is most evident in its traces throughout the collection: the space between the lines; the invisible ink of the author’s tone of respect, wonder, and appreciation of the lives of those of whom she writes. Compiling this book has been an experience in co-construction and humility. Talking, writing, and editing, we editors became ever more aware of the importance of close reading, considering different points of view, and deeply listening to ourselves and each other. We conclude with the recognition that our profession is at the very beginning of understanding the potential that narrative holds for all methods and fields of social work practice—and the hope that this collection invites readers to join us on our way down Bruner’s road.

references

Bruner, Jerome S. 1986. Actual Minds, Possible Worlds. Cambridge, MA: Harvard University Press. Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Das Gupta, Sayantani. 2008. “The Art of Medicine: Narrative Humility.” Lancet 371 (March 22): 980. Hohman, Melinda. 2013. “Cultural Humility: A Lifelong Process.” In Situ: The Blog of the SDSU School of Social Work, September 10. http://socialwork.sdsu. edu/insitu/diversity/cultural-humility-a-lifelong-practice. Tervalon, Melanie, and Jann Murray-Garcia. 1998. “Cultural Humility Versus Cultural Competence: A Critical Distinction in Defining Physician Training Outcomes in Multicultural Education.” Journal of Health Care for the Poor and Underserved 9 (2): 117–125.

contributors

c h r i s t i a n a b e s t - g i ac o m i n i ,

LMSW, PhD, is a social work practitioner with thirty years of experience working in the New York City child welfare system. She is also an adjunct faculty member at the Silberman School of Social Work and first vice president for the New York City chapter of the National Association of Social Work. Dr. Best is also devoted to advocating for and working on behalf of immigrant families. Many of her publications are focused on AfricanCaribbean women’s transnational experiences. b e n a i f e r b h a d h a is a storyteller, performer, and lifelong listener. She earned her master’s degrees in international affairs and in social work from Columbia University and has fostered the storytelling of marginalized groups in her home country of India as well as in countries in Eastern Europe, Africa, and North America. As a leader and teacher at Narativ, Benaifer creates safe spaces where people are inspired to listen and connect to others through their personal stories. r ac h e l b l u s ta i n , MSW, is the editorial director of Rise, a nonprofit that trains parents to write and speak about their experiences with the child welfare system. Rachel writes regularly about the child welfare system for City Limits. She also has written for the Daily Beast and Child Welfare Watch and edited the youth publications New Youth Connections and Represent. Rachel previously worked as a high school dropout prevention counselor. a n n b u r ac k - w e i s s , PhD, LCSW, is a practitioner, educator, consultant, and NASW Social Work Pioneer who taught two generations of students at the Columbia School of Social Work and is now an associate faculty member in Columbia’s Program in Narrative Medicine. She is author of The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life and The Lioness in Winter: Writing an Old Woman’s Life. a l i c i a f r y , LMSW, is a social work practitioner, trainer, supervisor, and writer. Currently employed as an educator/trainer at Healthfirst in New York City,

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she is a Supervisory Leaders in Aging Fellow and a published poet who serves on the NASW Delegate Assembly. Ms. Fry has presented on narrative supervision at national and international conferences, and she believes in the transformative power of story. c o n s ta n c e h . g e m s o n , LMSW, currently leads original workshops throughout New York City. She is the coauthor of Home Again: Here to Stay—A Model for Culture. She has taught at LaGuardia Community College, Hunter College, Pace University, and Marymount Manhattan College. j e s s i c a g r e e n b a u m is a poet and social worker living in Brooklyn. Her most recent book, The Two Yvonnes (2012), was named by Library Journal as a Best Book in 2012. A recipient of a 2015 NEA literature award and the 2016 Alice Fay Di Castagnola Award from the Poetry Society of America, she teaches inside and outside academia, including at Barnard College and the World Trade Center Health Program for 9/11 first responders. m a r y h u m e , LCSW, is a program director at Catholic Charities Neighborhood Services in Brooklyn, New York, where she has worked in older adult services since 1987. As a Supervisory Leader in Aging Fellow, Mary has made presentations at national conferences on “The Supervisor as Leader.” m i l l e t i s r a e l i , JD, LMSW, is an attorney and psychotherapist with a certification in bioethics. She sits on an Institutional Review Board for Human Subjects Research at Weill Cornell medical college. She also serves on the Bioethics Committee and the Palliative Care Subcommittee of the New York City Bar Association. Millet maintains a private practice with a focus on loss, end of life, and grief. ly n n s a r a l aw r e n c e , MS, is a psychotherapist and a graduate of Columbia’s Program in Narrative Medicine. She has taught at the New York School for Psychoanalytic Psychotherapy and Psychoanalysis, and has published and presented at conferences in both disciplines. Her most recent article was published in Smith College Studies in Social Work. Currently, she facilitates narrative medicine workshops and is in private practice in New York City. j u d i t h l e v i , MA, MSW, joined the Department of Social Work at Mount Sinai Medical Center in New York City, in 1970, where she worked in a variety of settings. She has written about the complexities of dealing with chronic illness in the family, has researched strategies to encourage a comprehensive approach, and has presented her findings at conferences in the United States and Europe. Since retiring, she devotes much time to connecting her passions for literature and social work.

contributors

heidi mandel,

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PhD, LMSW, is a social work supervisor and workshop facilitator at the Jewish Board in New York. She has worked for more than thirty years in the areas of hospice and palliative care, both clinical and research. She has published in peer-reviewed medical journals and books and has had short stories and poems appear in Narrateur, the literary journal of Hofstra Northwell School of Medicine. In addition, she has presented internationally on end-of-life issues, narrative medicine, and burnout. n o r a m c c a rt h y is the founder and director of Rise, a nonprofit that trains parents to write and speak about their experiences with the child welfare system. Rise stories have been published in the New York Times, read on NPR, and reprinted in dozens of child welfare–related publications. Nora has reported for Newsday, City Limits, and Child Welfare Watch. She edited the youth publications New Youth Connections and Represent, and is a graduate of the Medill School of Journalism at Northwestern University. ly n n e b a m at m i j a n g o s , MSW, MS, is practicum supervisor for the narrative medicine master’s program at Columbia University. Interdisciplinary approaches to health and well-being have informed her work in professional caregiving as an emergency room nurse, adult and child therapist, workshop facilitator, and program and clinical consultant. She is the author of Baby Girl Mijangos. m a d e ly n m i l l e r , PhD, LCSW, is a psychotherapist in private practice in New York City, specializing in clinical and community work with survivors of trauma and loss. She is an adjunct faculty member at New York University Silver School of Social Work, and is chairperson of the Disaster Trauma Committee, NYC Chapter, of the National Association of Social Workers. She provides support and training for clinicians and programs working closely with survivors to enhance their resourcefulness. k r i s t e n s l e s a r , LCSW, MS, is a trauma-focused psychotherapist in private practice and at the Bronx Child and Adolescent Witness Support Program. She frequently provides expert testimony and consultation for prosecutors on intimate partner violence, sexual violence, and traumatized witnesses, and facilitates workshops and lectures for the Program in Narrative Medicine master’s program at the College of Physicians and Surgeons, Columbia University. Kristen graduated from Columbia’s Program in Narrative Medicine in 2011. m a r y s o r m a n t i , PhD, MS, is professor of professional practice at the Columbia University School of Social Work. Her clinical and community-based practice, research, and publications focus on potentially traumatic events and

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circumstances, including illness, death of a loved one, intimate partner violence, and disaster. She maintains clinical licensure in New York and Massachusetts. l a u r e n tay lo r , MA, LCSW, is an oral historian, a psychiatric social worker, and an adjunct professor at the Columbia University School of Social Work. She has been on staff since 1994 at the Service Program for Older People, an outpatient mental health clinic for older adults. Ms. Taylor gives workshops and seminars on a range of mental health issues related to the aging process, with a focus on the therapeutic use of narrative for an aging population. She was recently appointed oral historian for the Emeritus Institute in Columbia (EPIC).

index

ABCs of self-care model, 63; awareness in, 52; balance in, 52; connection in, 52; Self-Care Assessment Worksheet for, 52 Abse, Dannie, 164 academic curricula, in music therapy history, 82 academic research, on music therapy, 83 Achtenberg, Ben, 240 Actual Minds, Possible Worlds (Bruner), 247 Addams, Jane, 3 Adelson, Edna, 170 advocacy, xiv; of child welfare-affected parent, 181, 183 affi liation, in narrative medicine, 47, 159, 248; for dying client and selfdisclosure, 75; narrative competence development and enhancement, 61; in nurses’ narrative workshop group, 162–63 agency policies, for narratives, 120–21 agent of change, social workers as, 164–65 Agger, Inger, 230 aging. See older adults agoraphobia, 18, 19, 20, 22, 28 AJC. See American Jewish Committee Altaf, Asif, 131 alternative narratives, xiv, 7, 8; for older adults, 109, 112 Altshuler, Ira, 81–82 Alzheimer’s disease, 149; list poems and, 125; Ruthirakuhan on, 151 ambiguity in art, Kris on, 40

Ambiguous Loss (Boss), 196 American Association for Music Therapy, 82 American Jewish Committee (AJC), 115–17 American Musical Therapy Association, 82 amygdala, 27 Angelico, Fra, 38 animation, from music, 81 Ankersmit, Frank, 35–36 anxiety disorder, 85; concentration difficulty, 86; experience of, 92–95; OCD combined with, 87–88; parental, family role and, 89–90; run-away mind in, 87; treatment efforts for, 86 anxiety of insignificance, of Merkin, 109 Apgar score, 156 Aristotle, 81; Poetics, 217 Armstrong, Louis, 80 arrested happening, of art, 35 “Arrow and the Song, The” (Longfellow), 147 art, xiv; ambiguity in, 40; arrested happening of, 35; beholder’s share and, 35, 42; camouflage in, 33, 34, 37, 40, 42; conflation of time in, 35; emancipation of past time, 35; to evoke memory, 33; expulsion in, 38; pentimento, 40; person-in-situation in, 25; as subjective historical experience, 35–36; time of image and, 34 assault on self-identity, Polkinghorne on, 108–9

256

assessment tools, for self-care: Compassion Satisfaction/Fatigue Self-Test for Helpers, 51; Professional Quality of Life scale, 51; Secondary Traumatic Stress Scale, 51 attention, in narrative medicine, 47, 248; narrative competence development and enhancement, 61; in narrative medicine groups, 62; at nurses’ narrative workshop group, 162–63; self-disclosure nature and, 72 “Aunt Jose” (Mastretta), 161–62 autobiographical gap, 42, 62 awareness: in ABCs of self-care model, 52; client, by music therapist, 83; self-, of social workers, 27, 219 Bakhtin, Mikhail, xiii, xiv–xv, 216–17 balance, in ABCs of self-care model, 52 Baldwin, Clive, 1, 8 Bay Ridge Alzheimer’s Service Center, group poem from, 149 bearing witness, to story, 109, 230 “Bearing Witness or the Vicissitudes of Listening” (Laub), 213 behavior: ethical and professional, CSWE core competency of, 14, 186; unconscious motivation for, 4 Behind the Beautiful Forevers (Boo), 168 beholder’s share, Kandel, 35, 42 “Being Mickey’s Doctor” (Mohrmann), 240 Berliner, Alan, 240 biomedical ethics principles, 52 birth control, Hasidic sect and, 103 Bishop, Elizabeth, 80 Bluebond-Langner, Myra, 235 blunted affect, of schizophrenic client, 72 Boo, Katherine, 168 Book of the Thousand Nights and a Night, The (Burton), 97, 103 Boss, P., 196 brain: amygdala, 27; executive-function deficit, 86–87; visual information processed by, 35 Brennan, Frances Coyle, 202

index

Briscoe, Lily (character), 34, 41 Brison, Susan, 63 Browde, Paul, 130 Brown, Brené, 129 Brown, Theresa, 240 Bruner, Jerome, 62, 216, 217, 247, 249 Buber, Martin, 69 Burack-Weiss, Ann, 202 Burk, Connie, 51 burnout, 49, 53, 59, 62, 63, 163; in compassion fatigue, 51; consequences of, 50; physical and emotional symptoms of, 50 Burton, Richard Francis, 97, 103 camouflage, in art, 33, 34, 37, 40, 42 Campbell, Catherine, 133–34 CancerCare, 115–16 Caregiver Collage (Hill), 209 caregivers: emotional detachment of, 53–57; Frank on, 51; in hospice, 77; secondary traumatic stress of, 50, 51, 52, 59; trauma exposure response, 51, 59. See also trauma therapists CaringKind, Connect a Culture program, 153 carnival metaphor, of Bakhtin, xiv–xv case history, of older adults, 117–20 case managers, to older adults, 202–3 Casement, Patrick, 25 Case Western Reserve University, Mandel School of Applied Social Sciences at, 98 catastrophizing, in OCD, 88 censorship in witnessing, of clinicians, 58–59 Chambon, Adrienne, 8 chaos stories, 112, 120 Charon, Rita, 61, 248; on literature reading, 106; on narrative competence, 9, 237; on narrative medicine and parallel charts, 105–6; at Program in Narrative Medicine, 8–9, 46–48, 237 child, with developmental delays: author experience with, 156–58, 165–66; physician detachment for, 157–58, 165, 166

index

children: curiosity of, 39; Hasidic sect on spoiling perception, 103; hospital policies change for, 27; pediatric oncology social worker for, 235–36; trauma from child welfare system removal, 171 child welfare-affected parents: advocacy of, 181, 183; negative family patterns, 170; personal narratives shattered, 169–71; Rise program for, 168–84; stories of, 125, 168–84; strengths-based perspective for, 169, 171; trauma screening results, 170. See also Rise writing group Child Welfare Organizing Project, 179, 181 child welfare system: child trauma from removal in, 171; entering, 169–71; generational family patterns repetition, 170; investigations and removals, 168; peer support, parent leadership and, 183; Rise for reform of, 183; transnational parenting and, 192 civil rights movement, 115 Clark, Phillip, 109 clearing, Heidegger on, 37, 40 client narratives, xiii, 2, 3–4 clients, 84; co-construction between clinicians and, 173, 203; engagement, CSWE core competency on, 68; Frank on perspective of, 59–60; intersubjectivity and, 71; interventions assessment, CSWE core competency on, 68; music therapist awareness of, 83; older adults oral history example, 113–17; resistance in, 111; schizophrenic, self-disclosure and, 72–74; selfdetermination rights of, 20, 28n1; self-disclosure and dying, 67, 74–78; social workers lack of knowledge of, 239 clinical sensitivity, for oral history, 121 clinicians: censorship in witnessing, 58–59; co-construction between clients and, 173, 203; countertransference, 26, 59, 71; empathy of, 78, 84, 220; Linehan on, 59; researcher role, 219–21;

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self-disclosure of, 67, 71–78; transference, 59. See also trauma therapists clinician-scholars, narrative research on trauma and, 213–31 close listening, 214, 218 close reading, 218; of literature, 238, 240, 242, 244; social work professional development from, 242; social work supervision and, 208–9 co-construction, 2, 220, 235, 249; of alternative narrative with resilience, 109; between clinicians and clients, 173, 203; Garden at Vaucresson and, 33; of healing, 63; in medicine, 60; Nelson on co-production and, 109; of poetry, 148–50, 153, 205, 210; technology and, 5; in therapy and oral history, 108–10, 122; using music and writing, 117–20 Code of Ethics, of NASW, 1, 247 Cohen, Dan, 83 collaborative practice: for health care delivery, 243; positive outcomes from, 243–44 Columbia University. See Program in Narrative Medicine, at Columbia University Common Human Needs (Towle), 3–4 community-building model, for dementia care, 151 compassion fatigue, 52–53, 59, 62; burnout and secondary traumatic stress in, 51; symptoms of, 49 Compassion Satisfaction/Fatigue Self-Test for Helpers, 51 compassion stress, Figley on, 49 Complexity of Connection, The (Jordan and Walker), 152 comprehensive care centers, for hemophilia treatment, 99 concealment, 34; author experience of, 36–37; Heidegger on, 37–38, 40; Mills, J., on, 39, 40 concentration, anxiety difficulty of, 86 confidentiality, 139 “confidentiality of the moment,” in Narativ, 135–39

258

conflation of time, in art, 35 Connect a Culture program, of Caring Kind, 153 connection: in ABCs of self-care model, 52; through poetry, 146; through self-disclosure, 67, 69–70, 74–78. See also social connections context replication, 25 co-production, Nelson on, 109 core competencies, of CSWE, 9, 84, 247; diversity and difference in practice engagement, 68, 186; engagement with individuals, families, groups, and communities, 68; ethical and professional behavior demonstration, 14, 186; human rights and social, economic, and environmental justice, 126, 186; interventions assessment for individuals, families, groups, and communities, 68; policy practice engagement, 126, 186 Council on Social Work Education (CSWE) core competencies, 9, 14, 68, 84, 126, 186 countertransference, 26; psychoanalysis on self-disclosure as, 71; traumatic, 59 creative self-expression, for dementia, 146 crime victim services, employee turnover rates of, 50 CSWE. See Council on Social Work Education curiosity of child, Knafo on, 39 Deferred Action for Childhood Arrivals, 198 Deferred Action for Parents of Americans and Lawful Permanent Residents, 198 deliberate self-disclosure, 71–72 DeLillo, Don, 153 delusions, of schizophrenic client, 72 dementia: creative self-expression for, 146; isolation from, 145, 151; Kitwood on, 145; music for, 82, 83; Music & Memory program for, 83, 84n1; poetry and, 144–54; Post on, 145. See also Alzheimer’s disease

index

Dennis, Ruth, 153 depression: OCD and, 89; from older adult declining health, 113, 116 de Vries, Brian, 109 Diagnostic and Statistical Manual of Mental Disorders (5th ed.), on trauma therapist post-traumatic stress disorder, 50 diagnostic approach, in social work, 4 Dialogic Imagination, The (Bakhtin), xiii Dickerson, Victoria C., 122 Didi-Huberman, Georges, 34 Dienstag, Alan, 153 digitalized form, in technology, 5 discovery: narrative research process of, 217, 221–23; writing as, 13–24, 27–28, 35, 42, 61–62, 85–86, 171–72 “Dis-ease” (Piercy), 240 dissociation, in traumatic memory, 35 “Distance and Relation” (Buber), 69 diversity, as CSWE core competency, 68, 186 Dreams of the Compass Rose (Nazarian), 201 dying client: fear of, 76, 84; pancreatic cancer, 75–76; self-disclosure and, 67, 74–78 ecological approach, in social work, 165 economic justice, as CSWE core competency, 126, 186 Eden Alternative, 152 editor role, in Rise writing group, 173 education, xiv; of graduate social workers, 186, 234–44; health care delivery interprofessional, 243–44; medical, narrative medicine in, 62; music therapy study programs, 82. See also training electronic record keeping, 121 Eliot, T. S., 34, 41, 42 emancipation of past time, in art, 35 embodied memory witnessing, 25 emotional detachment: by physician, for developmentally delayed child, 157–58, 165, 166; of trauma therapists or caregivers, 53–57

index

emotional issues addressed, in hemophilia clinic, 100 emotions, hemophilia role of, 104 empathic engagement, 220 empathy, of clinicians, 78, 84 employee turnover rates, in crime victim services, 50 end of life social work: hospice, 75, 77, 84; music therapy for, 82; palliative care, 75; with reluctant storytellers, 70–72; self-disclosure for connection in, 67, 69–70, 74–78 en fans (infancy) (without words), 26 engagement, 67; as CSWE core competency, 68; policy practice, as CSWE core competency, 126, 186 Enlightenment, 6 environmental justice, as CSWE core competency, 126, 186 epilepsy, 118–20 Epilepsy Foundation, 119 Epstein, Laura, 8 Epston, David, 7, 171 ethical behavior demonstration, as CSWE core competency, 14, 186 ethical constraints, 137 ethics: biomedical principles of, 52; between family members, 86 evidence-based practice, 6; for older adults life review, 109 Examined Life, The (Grosz), 15 exclusion theme, in psychoanalysis, 39 executive-function deficit, in OCD, 86–87 expulsion in art, of Angelico, 38 family: anxiety disorder and OCD role of, 89–90; ethics between members of, 86; generational patterns repetition in, 170; hemophilia impact on Hasidic sect, 101–3; therapy with, 98 family mapping, 207–8 fear, of dying client, 76, 84 56 Ways of Saying I Don’t Remember documentary, of Berliner, 240 Figley, Charles, 49, 51 Foucault, Michel, 8

259

“Four Quartets” (Eliot), 34 Fraiberg, Selma, 170 Frank, Arthur, 51, 59–60, 86, 92, 108, 204 Freud, Sigmund, 4 friendly visitors, in social work, 3 “From Trauma to Writing” (MacCurdy), 26 functional approach, in social work, 4 Furye, Odie, 114, 116 Garden at Vaucresson, The (Vuillard), 32; author experience with, 31, 33–43 gender-based violence, HIV/AIDS and, 137 generational family patterns, in child welfare system, 170 genograms, 207–8 gerontological social work: author experience with, 108, 109, 201–2; technology influence on, 5–6 gerontological social workers, xiii; case management, 202–3 Gershwin, George, 122n5 Gershwin, Ira, 122n5 “Ghosts in the Nursery” (Fraiberg, Adelson, and Shapiro), 170 Ginsburg, Allen, 148 global crisis, of HIV/AIDS, 131 Goffman, Erving, 128–29 graduate social work program, reflective writing in, 186, 234–44 grand narrative, Mills on, 6 Great Depression, 3 Gregory, David, 240–41 Grosz, Stephen, 15 group poem, from Bay Ridge Alzheimer’s Service Center, 149 groups: narrative social work with, 125–26, 204–9; poetry use by support, 95. See also specific groups Guest Cat, The (Hiraide), 30 Haley, Jay, 98 Hall, Donald, 164 hallucinations, of schizophrenic client, 72, 74

260

Hartman, Ann, 1 Hasidic sect: birth control and, 103; hemophilia impact on family of, 101–3 healing: Brison on witnessing and, 63; co-construction of, 63; Plato and Aristotle on music, 81; writing as, 13–14, 171–72 health, depression from older adult declining, 113, 116 health care delivery: collaborative practice for, 243; interprofessional education for, 243–44; team-based practice models for, 243 Health Insurance Portability and Accountability Act, oral history and, 121 Heidegger, Martin, 37–38, 40 Heijnders, Miriam, 134 hemophilia, 68, 97; comprehensive care centers for treatment of, 99; emotions role in physical manifestation of, 104; as genetic bleeding disorder, 99; Hasidic sect family impacted by, 101–3; HIV/AIDS complications, 106–7; home treatment for, 103–4; infusion techniques, 105; medical research on, 107; patient logs for treatment of, 103–5; Rasputin on, 99; Talmud and Maimonides writings on, 99; treatment of, 100, 103–5 hemophilia clinic: author experience with, 97–98, 100–107; emotional issues addressed in, 100; social worker role in, 100–101, 102; team approach in, 99–100 Herman, Judith, 58, 63, 230 hidden images, Didi-Huberman on, 34 hierarchies, xiv hierarchy of needs (Maslow), 188 Hill, Douglas, 209 Hiraide, Takashi, 30 HIV/AIDS: author experience with, 127–28, 134–41; gender-based violence and, 137; as global crisis, 131; hemophilia complications, 106–7;

index

ITF and, 131–41; Kenyan truck drivers’ narrative work, 125, 127–41; programs empowerment, for stigma-reduction, 134; Ruwa and stigma, 132–34; stigma of, 131–34 Holmes, Vicki, 240–41 Holocaust survivors, intergenerational trauma transmission of, 70 home treatment, for hemophilia, 103–4 hospice, 75, 77, 84 hospitals: narrative power in, 165; policy modifications for child in, 27; social and bureaucratic aspects of, 98. See also nurses’ narrative workshop group; physicians; residents’ narrative workshop group “Howl” (Ginsburg), 148 humanistic school, on self-disclosure, 71 human rights, as CSWE core competency, 126, 186 iconic image, 26–27 Ilsen, Isa Maud, 81 immersive listening, of trauma therapists, 186, 220, 226–27 immigration policy, 185; permanent residence status, 191–92, 196; psychological absence and, 196–97; restrictive laws, 191; undocumented immigration status, 191, 192, 193, 196; women as primary migrants, 190, 193–94 Immigration Policy Center, on permanent status methods, 191 indirect form of expression, of music, 83 individuals: core competencies for, 68; core value of worth of, 84; well-being linked to societal well-being, 9 infancy. See en fans informal discovery and learning, 221 inpatient hospice, 75 intergenerational trauma transmission, of Holocaust survivors, 70 internal obstacles, to listening, 130 internal supervision: Casement on, 25; writing as form of, 27

index

International Transport Workers’ Federation (ITF), HIV/AIDS and, 131–41 interprofessional education, positive outcomes from, 243–44 intersubjectivity, 35, 68; between narrator and listener, 108; in oral history, 111; oral history interview and psychotherapeutic relationship, 122; in psychotherapy, 111; Summerfield on, 122; value of therapist-client bond and, 71 interventions assessment, as CSWE core competency, 68 interviews: narratives, 221; oral history, 110, 121, 122; relational frame of, 223–26; relationship in, 220, 230–31; restorative process of, 223–24 investigations, in child welfare system, 168 isolation, from dementia, 145, 151 ITF. See International Transport Workers’ Federation James, Henry, 34, 42 Jamison, Leslie, 152 Jensen, Soren B., 230 Johnson, James Weldon, 122n3 Johnson, John Rosamond, 122n3 Jordan, Judith V., 111, 152–53 journaling, for self-care and trauma, 52–53 Jung, Carl, 48 “Just Listening: Narrative and Deep Illness” (Frank), 204 Kandel, Eric R.: beholder’s share of, 35, 42; on brain processing of visual information, 35 Karume, Anna, 131 Kay, Jerald, 122 Keats, John, 152 Kenyan truck drivers with HIV/AIDS, Narativ storytelling of, 125, 127–41 Kenyon, Gary, 109 key elements, of narrative competence, 238 Kinnell, Galway, 151

261

Kinsella, Elizabeth Anne, 209 Kitwood, Tom, 145 Knafo, Danielle, 39 Kris, Ernst, 40 Kropf, Nancy P., 108 Laub, Dori, 57–58, 61, 213, 230 Leaves of Grass (Whitman), 148 Letting Stories Breathe (Frank), 108 life-enhancing effects, of social connections, 129 life review, of older adults, 109 “Lift Every Voice and Sing” AfricanAmerican national anthem, 117; Johnson, J. W., and, 122n3 Lifton, Robert Jay, 230 Linehan, Marsha, 59 listening: close, 214, 218; immersive, 186, 220, 226–27; narrative competence in, 159; physical and internal obstacles to, 130; in psychotherapy, 110; self-disclosure and empathic, 78 Listening and Storytelling Method, of Narativ, 130, 133, 134–35 list poems: Alzheimer’s disease and, 125; Padgett description of, 148; prompts for, 148–49; in social work supervision, 205 literary criticism, xiv, 237–38 literature: author experience with, 234–36, 244; Charon on reading of, 106; close reading of, 238, 240, 242, 244; as form of escape, 97–98; hemophiliac use of, 107; person-in-situation and, 42 literature, reflective writing in graduate social work program, 186, 234–35; author experience with, 238–43; collaborative practice, 243–44; inferences and assumptions, 239–40; interprofessional education, 243–44; learning and about stories, 236–38; poetry, 240–41; sampling of texts used, 240; stories use for, 238–43 “Little Gidding” (Eliot), 41 “Living in a Negative Way,” 140 “Living Narratively” (Baldwin), 1 Longfellow, Henry Wadsworth, 147

262

Looking for Joey, 120 Lorde, Audre, 122 MacCurdy, Marian, 26 Maimonides, on hemophilia, 99 Mandel School of Applied Social Sciences, at Case Western Reserve University, 98 “Many Ways of Knowing” (Hartman), 1 Marcus, Isabel, 85, 92–95 Marxism, 4 Maslow, Abraham, 188 Mastretta, Ángeles, 161–62 McCready, Vicki, 203 medical education, narrative medicine in, 62 medical research, on hemophilia, 107 medical social worker, 165; author experience as, 156, 159 medicine: co-construction in, 60; narrative perspective in, 8; physician suicides, 50; schizophrenic client noncompliance of, 72. See also narrative medicine meditation, 119 memory: art to evoke, 33; embodied memory witnessing, 25; music for loss of, 82, 83; painful events recall, trauma and, 121; post-traumatic stress disorder and, 171. See also Music & Memory Program; narrative memory; traumatic memory mental illness: agoraphobia, 18, 19, 20, 22, 28; Altshuler music therapy program for, 81–82; anxiety disorder, 85–90, 92–95; dementia, 82, 83, 144–54; depression, 89, 113, 116; OCD, 85–96; schizophrenia, 67, 72–74 Merkin, Daphne, 109 metaphors, therapists use of, 122 migration reasons, for transnational parenting, 193–94, 198 Miller, Jean Baker, 111 Miller, Walter James, 147 Mills, C. Wright, 6 Mills, Jon, 39, 40 Minuchin, Salvador, 98

index

mirroring, in psychotherapy, 110 Mitchell, Christine, 240 modernism, 6 Mohrmann, Margaret, 240 mother narratives, on transnational parenting, 193–95 music, xiv, 68; animation from, 81; as indirect form of expression, 83; introduction to, 79; as narrative, 120; purpose of, 80, 81, 83 Music & Memory Program, 83, 84n1 music therapists: client awareness by, 83; national certification for, 82; role of, 82–83 music therapy: academic research on, 83; author experience with, 79–81, 83–84; co-construction in, 117–20; for dementia, 82, 83; schizophrenic client and, 73–74; undergraduate and graduate study programs, 82 music therapy history: academic curricula, 82; Altshuler program for mentally ill, 81–82; in end of life social work, 82; National Association for Music in Hospitals, Ilsen and, 81; National Foundation of Music Therapy, Seymour and, 81; National Society of Music Therapeutics, Vescelius and, 81; Plato and Aristotle on music healing, 81; during World War II, 82 music therapy organizations: American Association for Music Therapy, 82; American Musical Therapy Association, 82; National Association for Music Therapy, 82 nachtraglichkeit, nonlinear time expression of, 35 Narativ storytelling, of HIV/AIDS and Kenyan truck drivers, 125, 127–41; Altaf, Karume, and, 131; clinic professionals, 137; confidentiality of moment in, 135–39; invitation for, 131; Listening and Storytelling Method, 130, 133–35; program design, 131–32; Ruwa and, 127, 132–34, 137–41; Transport Workers HIV-Positive

index

Support Group, 137–38; USAFIRI Positive Workers Network, 141; witnessing ceremony, 139–40 narrative competence, 61, 247–49; Charon on, 9, 237; key elements of, 238; in points of view appreciation, 159; in reading and listening, 159; in self-reflection, 159 narrative consciousness, 248 narrative dialogue, 216 narrative gerontology, 109 narrative humility, 247–49 narrative in social work: client stories, 2, 6; client–worker relationship, 7; with groups, 125–26, 204–9; individual well being in a social context, 3; worker as expert, 7 Narrative Means to Therapeutic Ends (White and Epston), 7 narrative medicine, 8; affi liation in, 47, 61, 75, 159, 162–63, 248; attention in, 47, 61, 62, 72, 162–63, 248; author experience with, 45–48, 51–57, 60–63; Charon on parallel charts and, 105–6; To the Lighthouse assignment for, 30, 34, 41; in medical education, 62; qualitative study on, 62; representation in, 5–6, 47, 61, 62, 162–63, 248; trauma therapist and, 45–63; value of, 164–65 narrative medicine groups, 60, 63; author experience in creation of, 159–64; autobiographical gap and, 62; nurses’ workshop, 160–63; residents’ workshop, 159–60, 163–64; writing prompts in, 61–62 Narrative Medicine: Honoring the Stories of Illness (Charon), 9, 61, 105, 248 narrative memory, traumatic memory replaced by, 33, 35 narrative methods, 9; co-production in, 109 Narrative Methods for the Human Sciences (Riessman), 8 narrative paradigm: Bakhtin on language significance, 216–17; Bruner on, 216 narrative perspective: alternative narratives, xiv, 7, 8, 109, 112; in

263

medicine, 8; postmodernism and, 6, 7; in qualitative research, 8; in social work, xiv, 7–8; strengths-based, 7–8, 159 narrative research, 217 narrative research, on clinician-scholars of trauma: author experience with, 213–16, 218–26, 229–31; clinicianresearcher role, 219–21; discovery process, 217; discovery process beyond study findings, 221–23; formal and informal discovery and learning, 221; immersive listening, 226–27; interview relational frame, 223–26; paradigm, 216–17; research study design, 218–19; storytelling, 227–29; study, 215–16; study findings, 221–22; study impact, 229–31 Narrative Social Work: Theory and Application (Baldwin), 8 narrative study: on clinician-scholars of trauma, 215–26, 229–31; Riessman on, 218 narrative therapy, 171 NASW. See National Association of Social Workers National Association for Music in Hospitals, Ilsen and, 81 National Association for Music Therapy, 82 National Association of Social Workers (NASW) Code of Ethics, 1, 247 National Foundation of Music Therapy, Seymour and, 81 National Society of Music Therapeutics, Vescelius and, 81 Nazarian, Vera, 201 negative capability, Keats on, 152 negative family patterns, of child welfare-affected parents, 170 Nelson, Alondra, 109 New Deal social programs, Towle and, 3 “Night of the Eclipse” (Marcus), 92–95 nonverbal language, in psychotherapy, 110 Nossel, Murray, 129–30; Kenya Narativ program design, 131–32

2 64

nurses’ narrative workshop group, 160; affi liation, attention, and representation in, 162–63; Mastretta text selection, 161–62; personal stories, 162; reflective writing in, 162 Obama, Barack, 198 obsessive-compulsive disorder (OCD): anxiety disorder combined with, 87–88; author experience with, 85–91, 95–96; catastrophizing in, 88; depression and, 89; executive-function deficit in, 86–87; experience of, 92–95; parental, family role and, 89–90; ritualism in, 88 older adults, 121–22; alternative narratives for, 109, 112; author experience with, 108, 109, 112–14, 117–20; case history, 117–20; case management of, 202–3; client oral history example, 113–17; depression from declining health, 113, 116; individual functioning changes of, 108; life review, 109; list poems, Alzheimer’s disease and, 125; narrative gerontology for, 109; narrative medicine representation of, 5–6; Ritchie on interviewing, 121; selfnarratives on change for, 108; socially constructed expectations of, 108; social work supervision of, 185, 201–11 One Writer’s Beginnings (Welty), 13 On Kindness (Philips and Taylor), 234 On the Origin of a Work of Art (Heidegger), 37 oral history, xiv, 68; author experience with, 108, 109; clinical sensitivity for, 121; co-construction, in therapy and, 108–10, 122; collective and/or personal trauma in, 109; intersubjectivity in, 111; older adults example, 113–17; psychotherapy compared to, 121; recording, technology and, 121 oral history interview, 110; psychotherapeutic relationship and intersubjectivity, 122; Rickard on, 121 origin narratives, 2

index

Padgett, Ron, 148 painful events recall, trauma and, 121 palliative care, 75 Palmer, Parker J., 203 parallel charts, Charon on narrative medicine and, 105–6 parallel process, Shulman on, 203 paraphrasing, in psychotherapy, 110 parenting from a distance, 197 parents: anxiety disorder and OCD role of, 89–90; child welfare-affected, 125, 168–84. See also transnational parenting passive self-disclosure, 71 patient logs, for hemophilia treatment, 103–5 patients. See clients Pearlman, Laurie Anne, 51 pediatric oncology social worker, author experience as, 235–36 peer support: child welfare system and, 183; Rise writing group and, 177–78 Pennebaker, James W., 171 pentimento (to repent), 40 permanent resident status, in immigration, 191–92, 196 personality growth, social relationships increase of, 42 person-in-situation: in art, 25; in literature, 42 Philips, Adam, 234 physicians: detachment, for developmentally delayed child, 157–58, 165, 166; suicides of, 50 Piercy, Marge, 240 Pins and Needles, “Sing Me a Song of Social Significance” in, 81 Piot, Peter, 133 Plato, 81 Poetics (Aristotle), 217 poetry, xiv; of Bishop, 80; co-construction of, 148–50, 153, 205, 210; Holmes and Gregory on, 240–41; Jamison on changing social role of, 152; Kinnell on, 151; list poem, Alzheimer’s disease and, 125; support groups use of, 95

index

poetry, in dementia care: author experience with, 144–54; communitybuilding model, 151; Connect a Culture program, 153; connection through, 146; Dennis on, 153; group poem from Bay Ridge Alzheimer’s Service Center, 149 poiēsis, 62, 217 points of view, narrative competence in, 159 policies: agency, for narratives, 120–21; immigration, 185, 190–98; modifications for child, by hospital, 27; regulatory trends and, 121 policy practice engagement, as CSWE core competency, 126, 186 Polkinghorne, D. E., 108–9 Post, Stephen G., 145 postmodernism, 6, 7 post-traumatic stress disorder, 50, 171 practice settings narratives, 2 primal scene, exclusion theme and, 39 primary care, 99 Private Worlds of Dying Children, The (Bluebond-Langner), 235 professional behavior demonstration, as CSWE competency, 14, 186 professional development, through close reading and reflective writing, 242 “Professionalism” (Kinsella), 209 professionalization, of social work, 3 Professional Quality of Life scale, 51 professional use of self, 202 Program in Narrative Medicine, at Columbia University, xiii, 244; author experience with, 33–34, 48, 158–59, 237; Charon at, 8–9, 46–48, 237; narrative consciousness promoted through, 248 Progressive Era, 3 prompts, for list poems, 148–49 psychiatric deluge, 4 psychoanalysis, xiv; exclusion theme in, 39; nachtraglichkeit concept in, 35; Reynolds and, 4; on self-disclosure and countertransference, 71; unconcealment and, 39 psychoanalytic truth, as unconscious, 39

265

psychological absence, of immigrants, 196–97 psychosis, of schizophrenic client, 72–73 psychosocial oncology, learning from and about stories, 236–38 psychotherapy: co-construction, in oral history and, 108–10, 122; intersubjectivity in, 111; listening in, 110; mirroring and paraphrasing in, 110; narrative options, 111–12; nonverbal language in, 110; oral history compared to, 121; Surrey on process of, 150. See also music therapy qualitative research: narrative medicine study, 62; narrative perspective in, 8 racism, 115 Raleigh, Louise, 203 Rank, Otto, 4 Rasputin, Grigory, 99 reactivity, relational responsiveness compared to, 111 reading: Charon on literature, 106; close, 208–9, 218, 238, 240, 242, 244; narrative competence in, 159 Reading Foucault for Social Work (Chambon and Epstein), 8 reciprocal relationship, Listening and Storytelling Method on, 130 recordings: oral history, 121; therapists narrative, 111, 113–17 reflective functioning, 171 reflective writing, 41–42, 158–59, 165, 228; of graduate social workers, 186, 234–44; in nurses’ narrative workshop group, 162; social work professional development from, 242; social work supervision and, 208–9 regulatory trends, policies and, 121 relational competence, Jordan on, 153 relational-cultural model, of Miller, J., 111 relational engagement, 221, 222, 223–26 relational responsiveness, reactivity compared to, 111

index

266

relationships: in interviews, 220, 230–31; Jordan and Walker on, 152–53; personality growth from increased social, 42; therapeutic, 122 removal of child, in child welfare system, 168, 171 representation, in narrative medicine, 33, 47, 248; narrative competence development and enhancement, 61; in nurses’ narrative workshop group, 162–63; of older adults, 5–6; in resident narrative workshop group, 163; of self, in autobiographical gap, 62 research: academic, on music therapy, 83; hemophilia medical, 107; on HIV/ AIDS stigma, 133–34; narrative, on clinician-scholars of trauma, 213–31; qualitative, 8, 62 residents’ narrative workshop group, 159–60; Hall and Abse text selections, 164; self-reflection and representation in, 163 resistance, 111 restorative process, of interviews, 223–24 reunification, transnational parenting and, 192, 193 Reynolds, Bertha, 4 Richmond, Mary, 3, 42 Rickard, Wendy, 121 Riessman, Catherine Kohler, 8, 218, 230 Rise writing group: beginning of, 172; for child welfare-affected parents, 168–84; choice and control in, 175–76; development of, 174; editor role, 173; endings, 174; on family crises, 170; goals of, 169; joy, connection, and peer support, 177–78; privacy and safety establishment, 174–75; private groups, public voice, 182–84; story ideas, 173; supporting voice, 178–79; vulnerability, 180; writers journey, 179–82 Ritchie, Donald, 121 ritualism, in OCD, 88 “Ritual to Read to Each Other, A” (Stafford), 45

roleplay, 209–10 Ruthirakuhan, Myuri, 151 Ruwa, Francis, 127, 132–34, 137–41 Saakvitne, Karen, 51 Sang, Simon, 132 scheduling, for self-care, 53 Scheherazade (character), 99; author experience and, 97–98, 100–107; hemophilia story ending and, 107; social worker compared to, 97, 101, 103 schizophrenic client, 67; blunted affect of, 72; delusions of, 72; hallucinations and, 72, 74; medicine noncompliance and 72; music and, 73–74; psychosis of, 72–73; self-disclosure and, 72–74 Seagal, Janel D., 171 secondary care, 99 secondary traumatic stress, of trauma therapists or caregivers, 50, 51, 52, 59 Secondary Traumatic Stress Scale, 51 self: professional use of, 202; representation of, in autobiographical gap, 62 self-awareness, of social workers, 27, 219 self-care, xiv; ABCs model of, 52, 63; assessment tools and prescriptions for, 51; journaling for, 52–53; scheduling for, 53 Self-Care Assessment Worksheet, for ABCs self-care model, 52 self-determination rights, of client, 20, 28n1 self-disclosure: author experience with, 69–70, 72–78; for connection, in end of life social work, 67, 69–70, 74–78; deliberate, 71–72; with dying client, 67, 74–78; empathic listener and, 78; guidelines for, 72; humanistic school on, 71; introduction to, 69–70; passive, 71; psychoanalysis on countertransference and, 71; schizophrenic client and, 72–74; for therapeutic rapport, 71 self-identity, Polkinghorne’s assault on, 108–9

index

self-knowledge, xiv, 13, 62, 203, 248 self-narratives, on older adults change, 108 self-reflection, 13; narrative humility and, 248–49; in residents’ narrative workshop group, 163 self-stigmatization, 133, 137 Selma-Montgomery Bloody Sunday march, 115, 116 Seymour, Harriet Ayer, 81 Shakespeare, William, 144 shame, stigma of, 128–29 Shapiro, Vivian, 170 shell shock, 48 “Ship Pounding, The” (Hall), 164 Shopes, Linda, 111 short-term, behavioral, outcome-focused treatment, 121 Shulman, Lawrence, 203, 206 “Sing Me a Song of Social Significance,” in Pins and Needles, 81 social connections: life-enhancing effects of, 129; vulnerability and, 129 social ills, Minuchin and Haley interventions for, 98 social justice: child welfare-affected parents stories and, 168–84; as CSWE core competency, 126, 186; engagement, 221, 222 social relationships, personality growth from increased, 42 social work: case management, of older adults, 202–3; close reading and reflective writing for professional development, 242; diagnostic and functional approaches in, 4; ecological approach in, 165; end of life, 67, 69–70, 74–78; graduate students, stories used with, 238–43; as multistoried, 2–3, 238; narrative perspective in, xiv, 7–8; older adults case history, 117–20; technology digitalized form influence on, 5. See also end of life social work; gerontological social work social work, author journey into, 159–64; child with developmental delays, 156–58, 165–66

267

social workers: as agent of change, 164–65; case managers, to older adults, 202–3; co-construction, of story, 2; gerontological, xiii, 202–3; hemophilia clinic role of, 100–101, 102; inferences and assumptions of, 239–40; lack of client knowledge, 239; medical, 156, 159, 165; pediatric oncology, 235–36; reflective writing of graduate, 186, 234–44; Scheherazade compared to, 97, 101, 103; self-awareness application, 27, 219; supervision use, 20–21, 24–25, 27; transnational parenting and, 196, 198–99; on well-being, 3. See also clinicians; trauma therapists social work history: diagnostic and functional approaches, 4; Freud and Rank, 4; friendly visitors, 3; Great Depression and New Deal, 3; professionalization, 3; psychoanalysis, 4; Reynolds, 4; social work form, 5; social work function, 5; Towle, 3–4; zeitgeist, 4 social work narratives: of client, xiii, 2, 3–4; of practice settings, 2; of social worker, 2 social work supervision, 185; author experience with, 201–2; close reading, 208–9; genograms and family mapping, 207–8; group, 204–7; list poems in, 205; outcomes, 210–11; reflective writing, 208–9; roleplays, 209–10 societal well-being, individual well-being linked to, 9 Sociological Imagination (Mills), 6 Stafford, William E., 45 Stanley documentary, of Achtenberg and Mitchell, 240 stigma: Goffman on, 128–29; of shame, 128–29 stigma, of HIV/AIDS, 131, 132; Campbell research on, 133–34; Heijnders and Van Der Meij on, 134 Stone Center for Developmental Services and Studies, 111 “Stopping to Smile on the Way to Sadness” (Brown, T.), 240

268

stories: bearing witness to, 109, 230; chaos, 112, 120; of child welfare-affected parents, 125, 168–84; of hemophilia, 107; Kenya Narativ ceremony on telling of, 139–40; learning and about, in graduate social work program, 236–38; in narrative research, on clinician-scholars of trauma, 227–29; nurses’ narrative workshop group personal, 162; reflective writing in graduate social work program use of, 186, 234–44; reluctance, in end of life social work, 70–72; Rise writing group ideas for, 173; social work as multistoried, 2–3, 238; social workers co-construction of, 2. See also Narativ storytelling; narratives storytellers, reluctant, 70; self-disclosure and, 71–72 strengths-based perspective, 112; for child welfare-affected parents, 169, 171; of narratives, 7–8, 159; in residents workshop, 163 subjective historical experience, of Ankersmit, 35–36 suicides, of physicians, 50 Summerfield, Penny, 122 supervision: censorship in witnessing during, 58–59; internal, 25, 27; social workers use of, 20–21, 24–25, 27. See also social work supervision support groups, poetry use by, 95 Surrey, Janet L., 150 systems theory, 164 Szymborska, Wisława, 85 Talmud, on hemophilia, 99 Tandy, C., 108 Taylor, Barbara, 234 Taylor, Charles, 62 team-based practice models: for health care delivery, 243; in hemophilia clinic, 99–100 technology: digitalized form in, 5; electronic record keeping, 121; gerontological social work influenced by, 5–6; Music & Memory program use

index

of, 83, 84n1; oral history recording and, 121 tertiary care, 99 testimony, Laub on experience of, 58, 61, 230 theater, narratives of others through, 69 therapeutic rapport, self-disclosure for, 71 therapeutic relationship, 122 therapist–client bond, intersubjectivity and value of, 71 therapists: authenticity, J. Miller and Jordan on, 111; metaphor use by, 122; music, 82–83; narrative recording by, 111, 113–17 therapy. See psychotherapy Thomas, Bill, 152 time: art and conflation of, 35; emancipation of past, in art, 35; of image, in art, 34; intersubjectivity and, 35; nachtraglichkeit expression of nonlinear, 35 Tolstoy, Leo, 79 To the Lighthouse (Woolf), 30, 34, 41 Towle, Charlotte, 3–4 training: National Association for Music Therapy clinical requirements, 82; in Rise writing group, 172–73; in social work, 158–59; social work supervision and, 202–3, 204 transference, 59 transnational parenting, 185; ambiguous loss in, 196; author experience with, 187–90, 193–95; child welfare system and, 192; financial concerns, 197; migration reasons, 193–94, 198; mother narratives, 193–95; parenting from a distance, 197; reunification, 192, 193; social workers and, 196, 198–99; trauma and, 192; women as primary migrants, 190, 193–94 Transport Workers HIV-Positive Support Group, 137–38 trauma: child welfare-affected parents screening, 170; child welfare system removal of child and, 171; collective and/or personal, in oral history, 109; intergenerational transmission of, 70; journaling and, 52–53; narrative

index

research, on clinician-scholars of, 213–31; painful events recall and, 121; shell shock or war neurosis, 48; transnational parenting and, 192; of veterans, 48 trauma exposure: caregivers response to, 51, 59; trauma therapists influenced by, 48–51 Trauma Stewardship (van Dernoot Lipsky and Burk), 51 trauma therapists: burnout, 49, 50, 51, 53, 59, 62, 63, 163; compassion fatigue, 49, 51–53, 59, 62; emotional detachment, 53–57; immersive listening of, 186, 220, 226–27; narrative medicine and, 45–63; post-traumatic stress disorder, 50; secondary traumatic stress of, 50, 51, 52, 59; trauma exposure influence on, 48–51; unconscious infection of, 48; vicarious trauma response of, 48, 50; vicarious traumatization of, 50 traumatic countertransference, 59 traumatic memory, 38; dissociation in, 35; narrative memory replacement of, 33, 35 treatment: for anxiety disorder, 86; community-building model, for dementia care, 151; health care delivery, 243–44; for hemophilia, 99, 100, 103–5; meditation and yoga, 119; psychoanalysis, xiv, 4, 35, 39, 71; short-term, behavioral, outcomefocused, 121; team-based practice models, 99–100, 243. See also psychotherapy Tuskegee University, 114, 116 UNAIDS, 133 unconcealment, 34; author experience of, 37, 40, 42–43; Heidegger on, 37–38, 40; Mills, J., on, 39, 40; psychoanalysis and, 39 unconscious: behavior, motivation for, 4; psychoanalytic truth as, 39 unconscious infection, Jung on, 48 “Under One Small Star” (Szymborska), 85 undocumented immigration status, 191, 192, 193, 196

269

unformulated experience insights, 13 unheard voice, in narratives, 109 USAFIRI Positive Workers Network, 141 value: individual worth core, 84; of narrative medicine, 164–65; of therapist-client bond, intersubjectivity and, 71 Van Der Meij, Suzanne, 134 van Dernoot Lipsky, Laura, 51 Verghese, Abraham, 58 Vescelius, Eva Augusta, 81 veterans, trauma of, 48 vicarious trauma response, 48, 50 vicarious traumatization, 50, 222 visual information, brain processing of, 35 Vuillard, Édouard, 31, 32, 33–43 vulnerability: in Rise writing group, 180; social connections and, 129 Walker, Maureen, 152–53 war neurosis, 48 Washington, Booker T., 114, 116 webinars, on Music & Memory program, 83, 84n1 Weil, Simone, 201 well-being: individual link to societal, 9; NASW Code of Ethics on, 1; social workers on, 3 Welty, Eudora, 13 Wever, Chris, 120 “What a Wonderful World” (Armstrong), 80 What Is Social Casework? (Richmond), 42 White, Michael, 7, 171, 203 Whitman, Walt, 148 Winnicott, D. W., 95 without words. See en fans witnessing: Agger and Jensen on, 230; Brison on healing process and, 63; clinicians censorship in, 58–59; embodied memory, 25; failure in, 57–60; Herman on, 58, 63, 230; Kenya Narativ storytelling ceremony, 139–40; Laub on obstacles to, 57–58; Laub on testimony experience, 58, 61, 230; Lifton on, 230; Linehan and, 59; Riessman on, 230

index

270

women as primary migrants, in transnational parenting, 190, 193–94 Women with Big Eyes (Mastretta), 161–62 Woolf, Virginia, 30–31 World Conference Against Racism, Racial Discrimination, Xenophobia and Related Intolerance, 133 World War II, music therapy during, 82 worth of individual, core value of, 84 Wounded Storyteller, The (Frank), 86 writer’s journey, in Rise writing group, 179–82 writing, as discovery, 28, 35, 42, 85–86; author experience of, 15–24;

co-construction for, 117–20; as healing, 13–14, 171–72; internal supervision in, 27; in narrative medicine groups, 61–62; for self-reflection, 13, 159, 163, 248–49; for unformulated experience insights, 13 “X-Ray” (Abse), 164 “Yo” (Marcus), 85 yoga, 119 Zimmerman, Jeffrey L., 122