Volume V, Number 1 Spring 2019 Journal of Health and Human Experience
Needed, A New Woodstock The photograph on the front cover is by Heinrich Klaffs. Journal of Health and Human Experience
The Journal of Health and Human Experience is published by The Semper Vi Foundation.
Journal of Health and Human Experience Volume V, No. 1 PrefaceJournal of Health and Human Experience
General Information The Journal of Health and Human Experience is published by The Semper Vi Foundation, a 501(c)(3) public charity. The Journal is designed to benefit international academic and professional inquiry regarding total holistic health, the arts and sciences, human development, human rights, and social justice. The Journal promotes unprecedented interdisciplinary scholarship and academic excellence through explorations of classical areas of interest and emerging horizons of multicultural and global significance. ISSN 2377-1577 (online).
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ii Volume V, No. 1 Journal of Health and Human Experience Journal of Health and Human ExperiencePreface
Library of Congress Registration January 27, 2015 ISSN 2377-1577 (online) The Journal of Health and Human Experience is published by The Semper Vi Foundation, a 501(c)(3) public charity. The Journal is registered with the Library of Congress. ISSN 2377-1577 (online) The Journal is an interdisciplinary, academic, peer reviewed international publication. Its mission is to explore the full expanse of holistic and integrated health within the nature and meaning of human experience. Its scholarly and professional explorations richly convene all possible areas within the arts/humanities and the sciences, cultural and social concerns, diverse technologies, ethics, law, civil rights, social justice, and human rights. The Journal invites the reader into the fullness of our human nature, our history, and the expanding futures before us. The Editorial Leadership enthusiastically welcomes academic and research investigations, reviews, commentaries, creative writing such as poetry/short stories, new and emerging scholar submissions, and other possibilities. The Journal makes use of a highly innovative four-stage academic mentoring review process. A full description of the Journal’s mission, expanse, leadership, author requirements and additional general information can be obtained at: http://JHHE.sempervifoundation.org For direct contact, email Journal leadership via:[email protected].
Journal of Health and Human Experience Volume V, No. 1 iii Prepared by Graphic Arts and Publishing Services at The Henry M. Jackson Foundation for the Advancement of Military Medicine, Inc. Table of ContentsPreface
Mission: Semper Vi Foundation...... 1
Journal Editorial Board...... 5
Journal Gold Patrons...... 9
Author Biosketches...... 13
Prelude Freedom!...... 19 Edward F. Gabriele
Articles & Commentaries Davida Coady, MD: Maverick, Organizer, Altruist...... 25 De Fischler Herman
Healing through Self-Expression: The Role of Art Therapy in Medicine...... 32 Mill Etienne, Adam M. Karp, Jeffrey Omar Patrick, Nathan Carberry
Functional Medicine: A Holistic Treatment Approach to the Peaceful Healing Journey...... 50 Pushpanathan Muthuirulan
Wolf Pack Theory: A Dilemma for Health Care Outcomes...... 59 Kathleen Voigt
Exploring the Phenomenon and Perspectives of Empathy and Compassion in the Caring Professions: Part I ...... 69 Patricia Hinton Walker, Gloria Ramsey
The Experience of Sabbath: Exploring the Significance of Music in Healing from the Interdisciplinary Perspective of Theology, Medicine and the Arts...... 85 Joshua D. Arthur
The Open Forum: Exploring the Intersection of Health, Ethics & Law Gene Editing: A Brave New World?...... 115 Vaughan V. Caines
The Need for Balance: Exploring Law and Policy Regarding the Protection of Personal Data...... 123 Brett Cook
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Journal of Health and Human Experience Volume V, No. 1 v PrefaceTable of Contents
Compliance versus Moral Behavior in Human Research: The Need for Compassion and Care...... 130 Frederick W. Luthardt
Profiles In Courage: The Next Chapter George Brummell’s Journey. Light for a Darkened Life ...... 141 Jan K. Herman
The Critic’s Choice Book Review: Becoming ...... 149 Michael Krentz
Film Review: On the Basis of Sex...... 155 Janae Moore
Film Review: Boy Erased...... 158 Hugh Taylor
Under City Lights Poem: The Ocean ...... 165 Bruce R. Boynton
Vignette: A Ride to School...... 168 Brenda S. Lamkin
Poem: Self Arrest ...... 171 Ann Leigh Lucart
Upon Reflection: Ageing in a Timeless World ...... 173 Michele Savaunah Zirkle
vi Volume V, No. 1 Journal of Health and Human Experience MISSION
MissionPreface
The Semper Vi Foundation
“From Victim to Survivor to Victor” Mission: The Semper Vi Foundation is a 501(c)(3) tax exempt public charity dedicated to the design, development, implementation, and promotion of social justice and human rights resources, programs, and diverse opportunities in education, publishing, research, and services that help the suffering find healing and meaning in their lives. Of particular interest for the Foundation’s mission is Wounded Warrior Care and, equally, the care of all those who suffer in our wounded world. Vision: Semper Vi reaches out to all who have known the many forms of life’s suffering and tragedy. Semper Vi activities and opportunities seek to help all those who suffer, not only to survive, but also to become victorious so that their wounds become sources of healing for others. Semper Vi assists those who have benefited from our programs and activities to help others in need. Some of those who benefit from Semper Vi’s humanitarian and relief commitments include our Wounded Warriors and their families, as well as individuals and communities who have experienced violence and terrorism, victims of assault and destruction, those who have suffered discrimination and the loss of their human or civil rights due to religion and values systems, race, gender, sexual orientation, socio-economic status, national origin and ethnicity. Values: Those who become involved with Semper Vi programs practice the Foundation’s three core values: Learning, Healing, and Serving. Foundation participants seek to show those who have suffered that healing can be theirs especially when their stories and experiences become sources of comfort and care for others Programs: Semper Vi Foundation activities are organized into four programs. Education: The Semper Vi Foundation convenes a community of international, interdisciplinary scholars and professionals who develop and promote a wide range of educational programs and resources for enrichment in the humanities, health and healthcare, the physical and social sciences, human development and human rights
Journal of Health and Human Experience Volume V, No. 1 1 PrefaceMission
across the globe. This Founation designs and provides workshops, seminars, webinars, podcasts, full conferences and continuing education courses at various international locations. Depending on resources, events are filmed and posted on the website. Publication: The Semper Vi Press publishes the Journal of Health and Human Experience. It also publishes a wide variety of academic and professional books, periodicals, newsletters, and other resources serving the Foundation’s mission and constituents. Research: The Foundation serves as a sponsored projects college for investigators looking to promote a wide variety of academic and professional domains of inquiry. The Foundation promotes such programs in collaboration with various global universities, centers and institutes. Social Justice Services: The Foundation serves as a gathering point for individuals and communities who design and promote diverse social justice services and resources supporting human and civil rights. The Foundation supports already existing approaches and promotes the invention and launching of new services to meet emerging social justice needs across the globe. Reflection: Tales of heroes abound throughout world literature. Our attention is always captured by the stories of those who accomplish great deeds that benefit others and the world. Yet what is it that we mean by the term, “hero?” When is something “heroic?” A hero is one who, despite danger and weakness, musters the courage to sacrifice herself or himself for the needs of others. Sometimes this comes at the price of the hero’s life. However, in all instances, the hero vanquishes the danger and rises above it as victor. Yet there is another nuance. The work of the hero often goes deeper. In many tales, the hero not only fights the oppressor, but also suffers grievous wounds in doing so. The hero embodies the suffering and takes it into her or him self. The hero endures and survives. Yet even more amazingly, in these stories the suffering and pain are transformed from curse to blessing. The hero matures from victim to survivor to victor! The hero becomes “semper victorius!” Always the victor! Invitation: Join us as we build Communities of Victors, for today and tomorrow!
2 Volume V, No. 1 Journal of Health and Human Experience JOURNAL EDITORIAL BOARD and GOLD PATRONS
Journal EditorialPreface Board
Editor-in-Chief and Executive Director Edward Gabriele, DrM Humanities, Education, Research Ethics & Organizational Development & Strategic Planning Semper Vi Foundation
Editor Bruce Boynton, MD, MPH, PhD, FAAP Neonatology, Correctional Health, Global Public Health CorrHealth, Inc.
Senior Associate Editor Elizabeth Holmes, PhD, ABPP Psychology, Ethics, Leadership Science Stockdale Center for Ethical Leadership United States Naval Academy
General Counsel J. Michael Slocum, JD Slocum & Boddie, PC
Deputy General Counsel & General Counsel for International Affairs Vaughan Caines, MSc, MA in Law (UK) Forensica Legal, Bermuda Bermuda Human Rights Commission, Parole Board & Council for Allied Health Professionals
Development Advisory Committee Chair Karen Flaherty-Oxler, MS, RN, FACHE RADM, NC, USN (ret)
Members Senior Executive Advisors Louis Guarini, BA, MS President/CEO, L.J. Guarini and Associates, LLC Anthony Panto, BA, ABA, President, Panto Wealth Strategies Anne-Marie Regan, MSOD Walter Reed National Military Medical Center American University
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Journal of Health and Human Experience Volume V, No. 1 5 PrefaceJournal Editorial Board
Information Technology Leadership Zachary Slocum, BS Higher Ed Growth
Special Sections Editors Vaughan Caines, MSc, MA in Law (UK) Forensica Legal, Bermuda Bermuda Human Rights Commission, Parole Board & Allied Health Professionals Council
De Fischler Herman, BS, RP, SD Rabbinic Pastors Association
Jan Herman, MA Navy Medicine Historian (retired)
Associate Editors Yolanda Amerson, MSW, LSW, PsyD (cand) Ibrahim Abdel-Messih Khalil, MD, MPH Social Work, Psychology, Human Development Global Health, Enterology, Infectious Diseases & Humanities University of Washington Huntington Disease Society of America Mildred Huff Ofosu, PhD Charmagne Beckett, MD, MPH, FACP Biological Sciences, Immunogenetics, Internal Medicine, Infectious Diseases Sponsored Research Uniformed Services University of the Morgan State University Health Sciences Ruth Perot, MAT Vaughan Caines, MSc, MA in Law (UK) Education, Integrated/Holistic Health Forensic Science, Human Rights Law Social Justice, Human Rights & Criminal Law Summit Health Institute for Research Forensica Legal, Bermuda & Education Bermuda Human Rights Commission, Parole Board & Allied Health Professionals Council Clydette Powell, MD, MPH, FAAP Pediatrics, Neurology, Global Public Health Patrick DeLeon, PhD, MPH, JD & Human Rights Public Health Policy, Psychological Health George Washington University School of Uniformed Services University Medicine & Health Sciences
Mill Etienne, MD, MPH Dale Smith, PhD Neurology, Public Health Medical History Bon Secours Charity Health System Uniformed Services University New York Medical College Julie Zadinsky, PhD, RN Exnevia Gomo, PhD Pediatric Nursing, Research Ethics, Immunology, HIV, Research Administration Education Research, Qualitative Research University of Zimbabwe College of Augusta University Health Sciences
6 Volume V, No. 1 Journal of Health and Human Experience Journal EditorialPreface Board
Academic Review Committee Chair Jan Herman, MA Thomas J. Roberts, MPA, EdD History Educational Leadership, Higher Education Navy Medicine Historian (retired) Administration, Public Administration Florida Gulf Coast University Gordon K. Jones, DDS, MS Dentistry Members Lovell Federal Health Care Center David Anderson, DDS, MDS, MBHP Dentistry, Oral Health, Public Health, Bioethics Patricia Watts Kelley, MS, PhD, RN, FNP, GNP American College of Dentists Family & Gerontological Nursing Science Duquesne University Garrett B. Anderson, JD, MDiv, MTS Family/Education & Non-Profit Law, Deborah J. Kenny, PhD, RN, FAAN Practical Theology, Ethics Women Veterans, Nursing Research, State Bar of New Jersey and Washington, DC Qualitative Research Interpretive Phenomenology Seventh Day Adventist Communities, California Beth El College of Nursing and Health Sciences University of Colorado, Colorado Springs Shaun Baker, PhD, MA Philosophy, Ethics Anthony R. Kerlavage, PhD United States Naval Academy Biochemistry, Cancer Informatics National Cancer Institute Ben J. Balough, MD Otology, Neurotology Ann Leigh Lucart, PhD The Permanente Medical Group of Clinical Psychology, Personality Assessment Sacramento, California Character Development, Leadership United States Naval Academy (ret) Cedric M. Bright, MD, FACP Internal Medicine, Primary Care, Health Equity Frederick Luthardt, DBE, MA Brody School of Medicine, Bioethics, Research Ethics, East Carolina University Human Research Protections 112th President, National Medical Association Johns Hopkins University School of Medicine
Donna Burge, PhD, BC-APRN, CNS Charles MacKay, PhD Orthopedic Surgery and Psychiatric Nursing Philosophy, Research Protections USN Nurse Corps Reserves Independent Health Care Consultancy
Bruce A. Cohen, MD, MPH Victoria Molfese, PhD Family Practice, Occupational Medicine, Undersea/ Developmental Psychology; Child, Youth & Hyperbaric Medicine, Global Public Health Family Studies Old Dominion University University of Nebraska Lincoln Federal Bureau of Investigation George William Nasinyama, MS, PhD Brett Damian Cook, JD, LLM Epidemiology, Food Safety Public Health, Law, National Security, Cyber/Operational Law Veterinary Medicine United States Navy Kampala International University
Jayasri Majumdar Hart, MFA Tony B. Richard, MS, MEd, EdD (stdt.) Cinema/Radio Production/Direction, Education, Leadership, Healthcare Management, Humanities, Crosscultural Affairs Diversity, Social Justice, Equity The Bennae Group Hartfilms, Inc. (cont.)
Journal of Health and Human Experience Volume V, No. 1 7 PrefaceJournal Editorial Board
Academic Review Committee Bruce Steinert, PhD, CCRA John Winters, PhD Pathology, Biochemistry, Clinical Trials Health, Leisure & Human Performance Cancer Treatment Centers of America Bacone College
Manuscript Editing Committee Chair Jan Herman, MA Joseph L. Malone, MD History Infectious Diseases, Internal Medicine, Navy Medicine Historian (retired) Tropical & Travel Medicine Montgomery County Department of Members Health & Human Services Pamela B. Berkowsky, MALD International Affairs, Government & Joseph Menna, AIHM, MEd Non-Profit Administration STEM Education, Humanities Blue Sapphire Strategies Brandywine School District of Delaware
Jere M. Boyer, PhD, CIM, CIP, CCRP Bryan Murphy, MBA, PE D(ABB, Microbiol) Environmental Engineering Clinical Microbiology, Molecular Biology & United States Fleet Forces Command Immunology, Infectious Diseases, Tropical Medicine Anne-Marie Regan, MSOD Northeast Ohio Medical University Organizational Development and Innovation Walter Reed National Military Medical Center Douglas Carroll, MRE, MLIS, EdS American University Higher Education, Library Science, Religious Studies Joseph Thomas, MSSc, MSS, PhD George Washington University Leadership Science and Public Policy United States Naval Academy Dee Dee Chavers, MSM Management Science Pamela Vargas, MBA Department of Veterans Affairs Education and Research Administration Southeast Missouri State University Darlene Gilson, BA, CTESL English Literature, Language Education Franklin Eric Wester, MDiv, ThM, MSS Carleton University Ethics, Professional Identity, Just War, and Spiritual Resilience De Fischler Herman, BS, RP, SD Evangelical Lutheran Church in America Healthcare Chaplaincy, Spiritual Direction Rabbinic Pastors Association Michele Savaunah Zirkle, MA, PhD Holistic Healing, Education, Creative Writing Sarah Hope Lincoln, PhD Institute of Metaphysical Humanistic Science Psychopathology, Schizophrenia, Social Marshall University Cognition, Social functioning, Clinical Neuroscience Academic APA Expertise McLean Hospital - Harvard Medical School
8 Volume V, No. 1 Journal of Health and Human Experience Special Gold PatronsPreface
Special Gold Patrons 2019 We give special thanks to the following national academic leaders whose generosity has guaranteed the presence of the Journal in this calendar year for the enrichment of health and humanism scholarship.
In Memory of Mr. Samir Baksh RADM (ret) Karen Bishop Joseph Menna Ms. Pamela Berkowsky Flaherty-Oxler Mr. Bryan Murphy Dr. Gaurav Bhalla Dr. Shirley Godwin Mr. Robert Palmer Dr. Bruce Boynton Dr. Elizabeth Holmes & Dr. Cynthia Ricard Dr. John Mateczun Barrister Vaughan Caines Dr. Thomas Roberts Dr. Anthony Kerlavage & In Memory of Mr. and Mrs. Ms. Barbara Harner Ms. Kathleen Voigt Joseph N. M. Chicoine Dr. Frederick Luthardt Mr. Michael Washington Dr. Thomas Michael Corrigan Dr. Yvonne Masakowski Dr. Julie Zadinsky Dr. Arnold and Dr. Sandy Farley Dr. Brian Masterson Rev. Dr. Moni McIntyre
Journal of Health and Human Experience Volume V, No. 1 9
AUTHOR BIOSKETCHES
Preface
Author Biosketches
Joshua D. Arthur, MD, MTS, is Assistant Professor of Pediatrics and Health Care Ethics in the School of Medicine at Saint Louis University (SLU). He serves as the Chair of the Ethics Committee at SSM Health Cardinal Glennon Children’s Hospital in Saint Louis, Missouri as well as directing the Advocacy Curriculum for the SLU Pediatric Residency Program. His website, www.singingdrjosh.com, allows him to provide musical medical education to his patients and students.
Bruce R. Boynton, MD, MPH, FAAP, is Editor of the Journal of Health and Human Experience. Dr. Boynton has had a distinguished career as a Naval Officer, pediatrician, researcher, educator, and hospital administrator. He was Executive Officer, Naval Hospital Sigonella, Italy; Commanding Officer, Naval Medical Research Unit 3, Cairo, Egypt; and Commanding Officer, Medical Treatment Facility aboard USNS Comfort, a 1,000 bed hospital ship. He is currently the Statewide Medical Director for Centurion of New Mexico.
Vaughan V. Caines, MSc, MA in Law, a Barrister in Bermuda and the United Kingdom (non- practicing), is Founder, Forensica Legal. He is Chairperson of the Bermuda Human Rights Commission. He also serves on the Bermuda Parole Board, and the Bermuda Drug Treatment Court. A defence and human rights lawyer, he has published/presented globally on critically important interactions among law, science and human rights. Additionally a forensic scientist, Barrister Caines completed diverse international scientific internships.
Nathan Carberry, MD, is a resident in neurology at the Columbia University Medical Center. He completed an undergraduate degree in bioengineering from the University of Pennsylvania. With this background, Dr. Carberry is interested in both the research and application of neuroscience in medicine. He previously co-authored in the Journal an important book review of Oliver Sacks’ famous work, Musicophilia: Tales of Music and the Brain.
Brett D. Cook, JD, LLM, a Navy attorney, is the General Counsel for Naval Information Force Reserve Command in Fort Worth, Texas, and a distinguished instructor at George Washington University. He provides guidance to C-level managers and human resource directors regarding data privacy, regulatory compliance and cybersecurity. Additionally, he has managed the development and implementation of privacy and EEO policies and training programs for 134 global organizations. His LLM is in National Security/International Law.
Mill Etienne, MD, MPH, FAAN, a neurologist specializing in epilepsy and brain injury medicine, is Director of Epilepsy with Bon Secours Charity Health System, member of the Westchester Medical Center Health Network. He was Founding Director of the Epilepsy Center at Walter Reed National Military Medical Center. Dr. Etienne is assistant professor of neurology, associate dean of students, and faculty in the first and second year medical student ethics course at New York Medical College.
Journal of Health and Human Experience Volume V, No. 1 13 Preface
Edward F. Gabriele, DrM, is Distinguished Professor (adj), Graduate School of Nursing, Uniformed Services University. He is President & Chief Executive Officer of the Semper Vi Foundation and the Journal’s Editor-in-Chief. A long-term educator in the humanities, he has held senior executive positions in ethics, research and human rights, including service as Special Assistant to the Navy Surgeon General for Ethics and Professional Integrity. Dr. Gabriele is extensively published and is an international visiting scholar.
De Fischler Herman, RP, SD, SM, is a rabbinic pastor and facilitator of Age-ing to Sage-ing®. Ms. Herman served as hospice chaplain, taught Jewish bioethics for the ALEPH Ordination Program and presented at Smithsonian ethics education conferences as well as the National Center for Bioethics in Research and Healthcare at Tuskegee University. Ms. Herman co-chairs the Rabbinic Pastors Association and is a champion of the Center for Medicine After the Holocaust.
Jan Herman, MA, holds a master’s in History from University of New Hampshire where he also studied under a Ford Foundation Teaching Fellowship. He is the retired Special Assistant to the Navy Surgeon General for Medical History and Archivist. He has produced many Navy Medicine historical documentaries including “The Lucky Few” premiered at the Smithsonian in 2010. He is the 2015 recipient of the lifetime achievement Forrest C. Pogue Award for Excellence in Oral History.
Patricia Hinton Walker, PhD, RN, MCC, FAAN, a nurse and Master Certified Coach, is Owner/Director of Coaching Stepping Stones. She is certified in executive health and wellness and social-emotional intelligence coaching. She is an organizational development consultant. She continues to teach content/courses related to informatics, policy and mixed methods research in selected health sciences universities. A former Dean, Academic Vice President, and Hospital Administrator, Dr. Hinton Walker provides organizational development consultation for university/health system change.
Adam M. Karp, BS, is a fourth-year medical student at New York Medical College. Mr. Karp has a degree in Neuroscience from Muhlenberg College. He is an experienced researcher with an interest in phenomenology and studies of human experience. He will graduate with his MD degree in May 2019 with distinction in research and medical education. Mr. Karp is pursuing a career in academic neurology with a focus on education, research, and patient care.
Michael J. Krentz, MD, MPH, FACEP, is an independent author and consultant in healthcare and public health. He is a retired Navy captain whose 43-year career in emergency, preventive, and executive medicine encompassed health services practice and leadership in civilian, academic, and military health systems. A past-president of the American College of Emergency Physicians, Dr. Krentz served as senior clinician for the Health Analysis Department of the Navy and Marine Corps Public Health Center, Portsmouth.
Brenda S. Lamkin, MEd, CA, is Executive Director of the West Virginia Parent Training and Information, Inc. (WVPTI), a statewide, federally funded organization that trains the parents and families of children with disabilities. She also chairs the WV Advisory Council for the Education of Exceptional Children. Ms. Lamkin is the parent of a son with autism. His journey led to her compassion for other families with disabled children. No one should have to walk alone.
14 Volume V, No. 1 Journal of Health and Human Experience Preface
Ann Leigh Lucart, PhD, is a retired Clinical Psychologist having worked in various medical settings for the US Navy as well as an Assistant Professor at the US Naval Academy's Department of Leadership, Ethics, and Law. She also served as a senior Operational Psychologist with the Central Intelligence Agency providing direct support to the national clandestine service and global operations. She is a co-author on two articles in juried professional journals on gender and leadership.
Frederick W. Luthardt, DBE, MA, is the Director of the Johns Hopkins University Office of Human Subjects Research Compliance Monitoring Program, in Baltimore, Maryland. Dr. Luthardt’s doctorate is in Bioethics from Loyola University Chicago. In his twenty years at Johns Hopkins, Dr. Luthardt has been involved in human research as a coordinator, investigator, and, in the last fifteen years, in human research oversight and compliance. His current research efforts emphasize community engagement and IRB/Community interaction.
Janae Moore, DMin, LCSW, is a clinically trained chaplain and a licensed clinical social worker aiding those suffering from various spiritual/psycho-social ills and issues. She is Adjunct Professor, School of Social Work, at Morgan State University. A consultant for non-profit community organizations, Dr. Moore is also an Itinerant Elder in the African Methodist Episcopal Church. In 2017 she authored the book, “What Is that Thing? Poetry for Spiritual Introspection & Dialogue that Leads to Action.”
Pushpanathan Muthuirulan, PhD, is a Research Associate in Harvard University’s Department of Human Evolutionary Biology studying the developmental and genetic basis of human height variations and skeletal disorders. He previously was a postdoctoral fellow at NICHD/National Institutes of Health. He earned his doctorate in microbiology from Madurai Kamaraj University. Dr. Muthuirulan has been in laboratory research for over eight years exploring expansive scientific areas such as antimicrobial drug discovery, protein engineering, evolutionary/developmental genetics, etc.
Jeffrey Omar Patrick, BA, completed undergraduate studies at Columbia University with a Bachelor of Arts Degree in Film and Media Studies. He was the story designer for the award winning feature film “Inside Buffalo.” He is a second year Honor Student in the Master of Public Health program majoring in Health Policy and Management at New York Medical College, where he also serves as the Graduate Assistant for the School of Health Sciences and Practice.
Gloria Ramsey, JD, RN, FAAN, is the inaugural Associate Dean for Diversity, Equity and Inclusion and Faculty Associate in the Johns Hopkins School of Nursing and Faculty Associate nominee in the Berman Institute of Bioethics, in Baltimore, MD. As a registered nurse and attorney, her contributions include teaching bioethics, research ethics, public health ethics and health policy to inter-professional graduate students. She is a distinguished practitioner and Fellow in the American Academy of Nursing.
Hugh A. Taylor, MFA, is a screenwriter, director, author, and poet currently based in Baltimore, Maryland. He has been active in the Baltimore film community since graduating from the Maryland Institute College of Art in May of 2018. He has been involved in a number of projects, including the feature film Don’t Sleep (2017). Mr. Taylor has served as director and co-director on several short films around the Baltimore area.
Journal of Health and Human Experience Volume V, No. 1 15 Preface
Kathleen Voigt, MSN, NP-C, is a certified family and adult nurse practitioner with over thirty years’ experience. Ms. Voigt has worked in emergency medicine for 18 years and served in leadership positions for the University of San Diego, Moores Cancer Center; and served on behalf of the Department of Defense and State Department in Afghanistan and Iraq. She is currently a doctoral candidate at Rush University School of Nursing, Chicago, Illinois.
Michele Savaunah Zirkle, MA, PhD, is a published author, holistic energy practitioner, life coach and self-syndicated columnist. She is the author of the newly released novel, The Emerald Island Elixir, and the soon-to-be-a-motion picture, Rain No Evil, which is based on true events. In addition to hosting a radio show, “Life Speaks,” Dr. Zirkle leads meditations at various venues, teaching and inspiring participants to live with passion and purpose.
16 Volume V, No. 1 Journal of Health and Human Experience PRELUDE
PreludePreface
Freedom!
Dr. Edward Gabriele Editor-in-Chief and Executive Director, Journal of Health and Human Experience President and Chief Executive Officer, The Semper Vi Foundation Tel: (301) 792-7823 Email: [email protected]
It was a hot and humid August weekend. Typical for the concrete, brick and asphalt slathered areas of the Italian Market in South Philly. I was home from my job that summer – a short break from the administration office of a hospital emergency room where the temperatures in human dialogue were just as humid and sweat-breaking.
It was 1969.
I was getting ready to head into my senior year of high school. As my classmates and friends at that time would tell you, I was not exactly a typical teenager of my era. I had no time for hippies and “liberal” postures. I was a pretty narrow-minded young guy. Sure, I liked the dance music of my times; but I had no affinity with the beaded, tie-dyed, head-scarfed hippies of the era. At least I marketed myself that way. It felt safe.
There I was. On this hot weekend at the end of a day now watching a special report on my parents’ television. Something was going on somewhere in New York State. Never heard of the place. Some farm or something called “Woodstock.” A music convention or something seemed to be going on. Having studied music myself and being a musician and vocalist since I was four years of age, the report caught my attention. In fact, it also made it into newspapers and the radio. And friends and family and neighbors talked about it. It seemed this Woodstock-thing was the major topic of conversation all around me for quite a while. Given my self-styled safety net in life, I tried to push it all aside and pretend it was just “oh so much hippie garbage.”
But it wasn’t.
Every time its music came up on the television or radio, or when I saw the images in newspapers or at newsstands, much as I wanted to push it all aside, I couldn’t. Something deep inside me pushed and pushcd. Something deep inside me began to beat. It seemed my fingers would pulse with the sounds. And my feet would begin to tap and dance. The sounds and signs of whatever was going on up in New York on a farm were reaching deep down inside me to something I didn’t want to admit. Deep inside me I knew that the way I was carving myself in life was a kind of self-inflicted prison cell. Woodstock started to call me to something new, something I never expected --- something that only later in my life I would admit as being the cry for…..
Freedom!
Journal of Health and Human Experience Volume V, No. 1 19 PrefacePrelude
Now fifty years later, I smile and shake my head at the memory of my younger, less than truer self. And given my love of music and festivity that today I so freely enjoy as being at the heart of the man I really am, I celebrate the images and sounds and memories of that wonderful event we know and continue to celebrate as Woodstock.
This edition of the Journal celebrates and honors the memory of Woodstock. Only gradually over the last decades did I come to see in this wonderful festival a symbol of the freedom for which I ultimately was longing deep inside myself. In that spirit, our new edition of the Journal raises up Woodstock as a symbol for our world today for the freedom, the integrity, the Goodness and the Truth for which our world hungers and thirsts and absolutely needs so desperately.
We live in an era when we see again wide and deeply expansive horrors that we thought were gone from our societies, cultures, governments, and neighborhoods: resurging and expanding racism, prejudice and discrimination in all forms, atrocious inhumanities, horrific violations of civil and human rights etc. We see today the emergence of the deepest horrors arising from the Ur-addiction to power and domination. And we see all these nightmares in ways we never thought possible. We live in a time when greatness seems to be defined by nothing more than the deepest of evils. And it is in this time of desperation that we need a prophetic voice --- a call and a challenge to fight the good fight, to raise up those who are bowed down, to speak and live Truth, and to secure The Good.
This is the voice that was intended to sing out from Woodstock. The images and beautiful but also stinging voices of Jimi Hendrix, Joan Baez, Janis Joplin, and Richie Havens seep again into our ears and eyes and hearts calling us today to new horizons. Woodstock, you see, was not just a time bound event. It is not just a memory of oh-so-immature musical joy. Not at all! It is a most powerful cultural symbol urging us to dedicate our heads, hearts and hands to the work of humanization for one and all.
It is in this spirit of humanizing that Woodstock’s golden anniversary serves as a fitting symbolic theme for this new edition of the Journal. The Journal is deeply dedicated to explore always the fullness and expansive nature of holistic health --- the fullness of what it truly means to be human. Our editions never-endingly move us in the most diversely wonderful ways to review innovative thoughts and research in the sciences and the humanities so as to discover ever anew how we are being called to be human and humane. Within that spirit, the Journal explores social justice and human rights as intrinsic to the very nature of what we mean by “health.”
This edition continues to explore the fullness of health so elegantly. We are moved by the academic richness of the various articles we are so proud to publish. We continue our exploration of historic figures who truly move us to live courageously and selflessly. We are once again moved by critically important and insightful reviews of special films and books that stoke the fires. And we are enriched by new creative writings that move us deeply.
And in this edition, we are proud to inaugurate a brand new section entitled, “Open Forum: Exploring the Intersection of Health, Ethics and Law.” This new section offers us profound essays from experts in these fields who will seek to have us engage provocative interdisciplinary areas of ethical concern and formation in our world today.
20 Volume V, No. 1 Journal of Health and Human Experience PreludePreface
The Journal continues its mission and its outreach. Interdisciplinary, international in its pursuits, academically intense, and creatively expansive, the Journal is an avenue for profound thought and reflection for us all. And it is always an honor for us to publish it and present it to you, our wonderful readers. The Journal is not just a publication. It is not just an online entity. Rather, we have come to believe that the Journal is truly a rich way to call others to a sense of communal discovery. Indeed, it makes us the Journal Community. And we warmly welcome you to this new edition – an edition that calls us to remember and to be “re-membered” as a human and humane family ever dedicated to The Good! In this new edition, we invite you to join us as we honor the 50th anniversary of the Woodstock Festival with its message of joy and change, and its invitation for us to welcome being catapulted into unbridled Newness.
And so, the drumbeats begin. The guitar strings are strummed. Feet tap and dance. Tie- dyed and tattooed arms embrace. And a gifted Richie Havens begins to call us to a deep Hare Krishna from the front stage of life as he sings to us today just as he did fifty years ago to start the Woodstock Festival:
FREEDOM!!!!! Photo by Derek Redmond and Paul Campbell
Journal of Health and Human Experience Volume V, No. 1 21
ARTICLES
Articles
Davida Coady, MD: Maverick, Organizer, Altruist
Rabbinic Pastor De Fischler Herman Chaplain, Spiritual Director and Sage-ing Mentor E-mail: [email protected]
Author Note The opinions expressed here are those of the author alone. The author has no financial conflicts of interest.
Abstract In every age of human history, heroes arise who inspire society’s citizens with the best of what it means to be human. The lives of such heroes often are marked with extraordinary self-sacrifice. Such was the life and person of Davida Coady. A pediatrician and public health leader who worked extensively with the poor and needy across the globe, Dr. Coady tirelessly worked for social justice and human rights. She always preferred enriching others before enriching herself. She embodied what it means to be a healer. Her inspiring life story ignites the imagination and one’s sense of purpose and mission in life. Dedicated to bringing healing to all those in greatest need, both in the United States and across the globe, Dr. Davida Coady is a true hero for our time. Her story challenges individuals and society in general to work with greater self-sacrifice and creative generosity for the healing and well-being of those who are in need. Keywords: pediatrics, public health, social justice, human rights, recovery
Introduction Davida Coady. Her name may not ring a bell, unless you are connected with one of the multiple social justice programs she initiated and led in the developing world or in her beloved hometown of Berkeley, California. Who was this woman and why is it important for us to know her? What does her life and work tell us about ourselves? How might her spirit infuse ours with similar altruism, compassion and energy to heal the wounds in our own communities as well as in famine and disease-riddled places far from here?
Birth, Upbringing & Education She was born Davida Taylor, a coal miner’s daughter, in April 1938 in Berkeley --- the only live child of her poorly educated, blue collar parents. Her mother, after multiple miscarriages and stillbirths, gave birth to Davida at age 48. Her father had left the mines and worked the rest of his life for UC Berkeley ---“Cal” --- where his gregarious nature connected him to many professors. Davida’s exposure to the rich academic environment opened her mind to worlds beyond the confines of home. Growing up, Davida struggled with school, with her mother, and with making friends. An invitation during eighth grade to become the school representative for the Red Cross gave the teenager a camp training experience away from home. This seminal
Journal of Health and Human Experience Volume V, No. 1 25 Articles moment instilled in Davida a sense of her life’s purpose: “I wanted to be a social worker, I wanted to save people…serving the less fortunate, doing good.” (Coady, 16)
Neither poor grades at Berkeley High School nor discouraging words from her guidance counselor could dissuade Davida from aiming for a college education. During her undergraduate years at College of the Pacific, an unexpected stint at a camp for diabetic children connected the budding activist with two doctors, both women, who encouraged Davida and supported her aspirations to go to medical school. Her process of choosing a school reveals a lot about her character.
Deciding to forego offers from several California universities and never having traveled outside her home state, Davida hopped on a Greyhound bus and headed to New York to pursue an application to Columbia, which offered an unconventional experience that beckoned her: a fourth-year elective in Africa. She had a gift for connecting with the right people. By the time Davida’s return bus ride landed her back in Berkeley, an acceptance letter from Columbia was waiting.
The product of a working-class background, Davida was an outsider at Columbia, surrounded by elitist students from Ivy League universities who had never held a job. Additionally, being a female medical student in the early 60’s meant sexist treatment by professors. Yet, staying focused on the desire to do the greatest good for the greatest number, Davida’s passion, idealism and sheer force of will fueled her passage through the rigorous years of medical training, including flunking out and having to repeat her second year. She received her medical degree from Columbia in 1965 and, later, a master’s in public health from Harvard.
Davida’s fourth-year elective landed her in Liberia, where she attended to sick children, performed surgeries and saved lives. She became close friends with the native people and learned a profound lesson about public health, namely that many diseases are treatable and many deaths are preventable. People do not need a lot: clean drinking and bathing water, nutritious food, protection against viruses and bacteria, etc. Coupled with education, these survival basics form the prevention-oriented approach that is public health. Being an activist and educator would be instrumental to her effectiveness as a public health physician in the developing world as well as in the United States.
Third World Medicine Davida was a “hippie” before the term was coined. Her free-spirited and inquiring nature led her to public health service in Guatemala, Biafra, Haiti, India, Nicaragua, Honduras, Liberia, Bangladesh, Thailand, Uganda, El Salvador, Ethiopia and the U.S., working among the malnourished, the poor, refugees and addicts. In Haiti she worked on the Harvard tuberculosis project. In war torn, famine-plagued Biafra, she nearly was killed trying to save starving children. After the Peruvian earthquake in 1970, Davida was politically appointed the Peace Corps’ medical director, yet served only briefly in that role when the Nixon administration learned of her voter registration with the leftist Peace and Freedom Party.
Though no longer its medical director, Davida took a Peace Corps position training medical volunteers in Sub-Saharan Africa, Latin America and the Caribbean until loneliness
26 Volume V, No. 1 Journal of Health and Human Experience Articles and travel fatigue propelled her for a time back to California. At the University of California Los Angeles (UCLA), she taught pediatrics and community medicine; and she joined the United Farm Workers’ union organizing efforts led by Cesar Chavez, involving her students in rotations for the union’s free clinic. Splitting her time between adjunct teaching at UCLA and field assignments, Davida also worked on smallpox eradication in India.
Later, she returned to India to work with Mother Teresa in her hospice, tuberculosis hospital and family clinic. Ever the organizer, Davida expanded Mother Teresa’s successful, though limited, family planning program by linking it with USAID’s World Food Program, resulting in thousands of women participating. Although Mother Teresa showed no interest in Davida’s appeal to support the boycott of Nestlé infant formula in poor countries, the good doctor took it on as a cause when she returned to UCLA. Advancing the argument that contaminated water mixed with the formula would sicken babies, Davida advocated for breastfeeding as the safer, healthier and least costly way to nourish infants. Davida got the support she sought from the renowned pediatrician Dr. Benjamin Spock and actors Ed Asner and Linda Kelsey.
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Parenthetically, it is important to note that, despite the efforts of Davida and other activists, breastfeeding vs. infant formula remains, four decades later, a heated topic. In 2012, New York’s Mayor Michael Bloomberg launched a campaign called Latch On NYC to support breastfeeding and push hospitals to cease distributing gift packs of formula to new mothers.
While Davida served on the board of Concern America, a California-based non- governmental organization doing international relief work, she connected with celebrities Mike Farrell, Martin Sheen and Bianca Jagger who were engaged in humanitarian causes. Simultaneously, Davida served as medical director of the Venice Family Clinic in southern California which, she proudly noted, is now the largest free clinic in the nation. After an upheaval with Concern America’s board, Davida and Martin founded the San Carlos Foundation to provide health and educational assistance to refugees and impoverished people in developing countries, particularly Central America.
Personal Struggles and Triumphs As focused and effective as Davida was in her vocation, she struggled with intimate relationships as well as with a tendency toward depression and a proclivity for alcohol. During college and medical school years and for decades that followed, her desire for a true love relationship went unfulfilled. In her mid 30’s she married Pat Coady, an Irish Catholic ex-priest who also had an affinity for drinking. About her relationships she wrote, “I attached to…very inappropriate people, especially when I was drunk, who were fun and free-spirited and liked to travel.” (Coady, 180). The marriage ended in divorce and, only many years later, did Davida come to accept that she was an alcoholic. She sought help and, many relapses notwithstanding, finally got sober. During those years Davida also grappled with her desire to have a child, attempting at various times artificial insemination and adoption. In this realm she was unsuccessful.
Davida did finally find true love in what would be a most unusual way. In her late 50’s she took up working with the courts to help addicts get into treatment programs rather than jail. One day a judge asked Davida to speak to Tom Gorham, a smart yet homeless, toothless man in a lot of trouble. Tom had been arrested hundreds of times for alcohol and drug abuse. After many false starts, Tom worked his way through Options Recovery, Davida’s diversion program. He got clean, sober and educated and joined the staff as an addiction
28 Volume V, No. 1 Journal of Health and Human Experience Articles counselor. Davida, at 64, and Tom, 11 years her junior, married. Together they expanded the Options program into California prisons, succeeding in getting lifers out of prison where other attempts failed.
Effective Altruism Davida was energized when treating sick people, organizing community health initiatives and demonstrating for social justice issues. She testified at Senate hearings convened by Senator Ted Kennedy. She was arrested, by her estimate, more than 50 times protesting nuclear arms and power plants and other actions concerning Central America. Material wealth did not appeal to her, as she wrote, “Money has never driven me.” (Coady, 109). Without hesitation, Davida would pay for a child’s surgery or education. She sponsored people from Africa and brought them to the United States for training. She offered lodging to those needing a place to stay until they could get on their feet. Altruism fueled her. Altruism, according to the Greater Good Science Center at UC Berkeley, is “…when we act to promote someone else’s welfare, even at a risk or cost to ourselves.” (Greater Good Science Center). Davida acknowledged her fears, particularly during stormy airplane trips, yet, she “…was at ease with risking my life for a good cause.” (Coady, 386)
The young radical would challenge the status quo wherever she served, if she could find a way to make it better and called out social injustice whenever she saw it. Davida writes in her diary:
I’ve always been a reformer, and any job I’m given I try to rethink it, and make sure there isn’t a way to improve it. Patients in those days tended to be treated a little like cattle, and I wondered what it was like for a patient and his or her parent to arrive at the pediatric outcall clinic. I sat in the waiting room one afternoon for an hour or two, talking to parents, and then followed patients through the outcall system. I digested it, and then suggested changes to the department head. (Coady, 76)
Davida’s character strength intimidated some of the doctors she would encounter, such as when she served as chief resident at the UCLA hospital. It was the late 1960’s while the Vietnam War was raging, and the pacifist pediatrician authorized the ward to treat two war- injured Vietnamese children, which “led to one of the biggest fights the hospital had seen.” (Coady, 77)
Journal of Health and Human Experience Volume V, No. 1 29 Articles
Respected Elder Davida maintained the life-long conviction “…that one should leave the world a better place than one found it, and that our lives are worth very little if we don’t do something to make the world better.” (Coady, 385) Near her life’s end, having advanced cancer, she declared in her memoir that she “…didn’t want to be a social worker…” and “…never wanted to be seen as squishy or a do-gooder…” and would rather have been called a “fighter.” (Coady, 386) While those sentiments seem to contradict the ideals she espoused in her youth, they may well be the product of Davida’s ripening into maturity. By the end of her life, Davida achieved the status of something each of us desires: respected elder. The truth is she did far more good than even the best altruists of us can ever hope to achieve.
Davida Coady’s memoir, The Greatest Good, was published by Hesperian Health Guides shortly before her death on May 3, 2018.
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References Coady, D. (2018). The Greatest Good. Hesperian Health Guides. Berkeley, California.
Greater Good Science Center. (2019). What is Altruism? Greater Good Magazine. University of California Berkeley. Retrieved from: https://greatergood.berkeley.edu/topic/altruism/ definition.
Hagerty, J. (2018, May). Davida Coady Traveled the World to Give Medical Training and Care to the Poor. Wall Street Journal. Retrieved from: https://www.wsj.com/articles/davida- coady-traveled-the-world-to-give-medical-training-and-care-to-the-poor-1526653801
Mitchell, B. (2018, May). In memoriam: Davida Coady, physician activist and founder of Options Recovery. Berkeleyside. Retrieved from: https://www.berkeleyside. com/2018/05/07/in-memorium-davida-coady-physician-activist-and-founder-of-options- recovery.
Sandomir, R. (2018, May). Dr. Davida Coady, Medical Missionary, is dead at 80. The New York Times., A26. Retrieved from: https://www.nytimes.com/2018/05/11/obituaries/dr- davida-coady-public-health-activist-is-dead-at-80.html
Zahbhiser, C. (2008, July 11). An Interview with Davida Coady at the Centers for Disease, The Global Health Chronicles. Retrieved from: https://globalhealthchronicles.org/items/ show/3533.
Editor’s Note The Journal is honored that the Coady/Gorham family, Hesperian Health, and Options Recovery donated the free use of the photographs found in this article.
Our readers are encouraged to explore Dr. Coady’s published diary, The Greatest Good, on the Hesperian Health Guides website. Information can be gained for obtaining a copy of her diary at the website: https://store.hesperian.org/prod/The_Greatest_Good.html.
Journal of Health and Human Experience Volume V, No. 1 31 Articles
Healing through Self-Expression: The Role of Art Therapy in Medicine
Mill Etienne MD, MPH, FAAN Assistant Professor of Neurology New York Medical College 40 Sunshine Cottage Road Valhalla, NY 10595 Tel: (914) 594-4498 Email: [email protected]
Adam M. Karp, BS Medical Student New York Medical College 40 Sunshine Cottage Road Valhalla, NY 10595 Tel: (914) 594-4498 Email: [email protected]
Jeffrey Omar Patrick, BA MPH Student New York Medical College 40 Sunshine Cottage Road Valhalla, NY 10595 Tel: (914) 594-4498
Nathan Carberry, MD Neurology Resident Columbia University The Neurological Institute of New York 710 West 168th Street New York, NY 10032
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Author Notes The authors are solely responsible for the contents of this article. The contents do not necessarily reflect the position of New York Medical College or Columbia University. The authors have no financial conflicts of interest. All correspondence should be directed to Adam M. Karp and Dr. Mill Etienne per above.
Special Acknowledgement: Of particular notation, the authors are grateful to two art therapists interviewed for this article: Dianna Kreisler MS, LCAT, ATR-BC, CTRS and Denise Horton MS, ATR-BC, LCAT, CASAC-T. The information provided added richly to the expanse of this article.
A Note about the Artwork: This article was greatly enriched by the artistic accomplishments of two particular artists who have given permission for their usage of their work. The artists wish to remain anonymous within the article itself. However, they are open to being known to individuals and credited for their accomplishments upon request. If any readers wish to know the artists and acknowledge their giftedness, individuals should contact the first author who will assist the sharing of credits and any potential connections between the artists and interested readers.
Abstract Art has been a part of human culture throughout time. However, more recently it has been adapted into medical practice in the form of art therapy. Art therapy strives to utilize a variety of forms of creative expression to allow individuals to identify and vocalize their inner thoughts, feelings and identity in a positive environment with the goal of improving their quality of life. While initially utilized in a variety of psychological conditions, such as post-traumatic stress disorder (PTSD) and anxiety, it has now been utilized for individuals with psychosis, cancer, stroke, dementia, traumatic brain injury, autism spectrum disorder, chronic pain, and a variety of other conditions. Participants report decreased feelings of hopelessness and depression, increased social networking, and increased quality of life among a variety of other benefits. While research into art therapy is still in its infancy, this article hopes to illustrate the potential of this non-pharmacological adjunct to traditional therapy. To further emphasize the benefits of art therapy, this article includes vignettes of multiple patients who have found new identities and emotional solace by turning to art during their recoveries. Keywords: art therapy, quality of life, personal identity, social isolation, post-traumatic stress disorder, brain injury
Journal of Health and Human Experience Volume V, No. 1 33 Articles
Introduction Art is a form of human communication that extends both verbal and nonverbal expression. It is useful as a means to connect with others and can be a healing force both for the artist and for those who interact with the end product. From the spiritual sand mandala(Figure 1) rituals performed by Tibetan Buddhists to the painting performances of Bob Ross, the meditative power of the humanities has arisen as a useful form of medical therapy. As utilized today, the term art therapy refers to the use of arts and art materials of all varieties to enhance the lives of individuals, families, and communities by exploring personal and relational goals, thoughts and feelings while connecting with the therapist in a safe, non-judgmental environment (“About Art Therapy,” 2017; D. Waller, 2006).
According to Margaret Naumburg, an originator of art therapy, a pillar of this tool in medicine is to release the unconscious by utilizing free association in order to create a piece that can be analyzed for the benefit of the patient (“Art Therapy History - When Was Art Therapy Started,” n.d.). These expressions are a non-verbal demonstration of suffering in a person who may otherwise be unable to vocalize their inner thoughts, emotions, and identity (Schouten, de Take A Look At My Life, 2016 (9x12, oil on canvas). A painting by PH, an man who became Takean artist A following Look significantAt My Life, brain injury. 2016 Depicts (9x12, Neil Youngoil performing at Niet, Knipscheer, Kleber, & Hutschemaekers, the Bethelon Woodscanvas). Center A in painting Woodstock, byNY. PH, an man who 2015). Although art therapy is nascent in became an artist following significant brain its development, research has indicated that injury. Depicts Neil Young performing at the art projects tend to enhance empowerment, Bethel Woods Center in Woodstock, NY. mental health, and social inclusion for individuals suffering from a variety of conditions (Brady, Moss, & Kelly, 2017). The aim of this article is to summarize the utility of art therapy in medicine.
Art Therapy in Medicine Art therapy began to emerge as a viable therapeutic tool after World War II (WWII). Veterans’ hospitals first offered art therapy to patients in 1945 when the Winter Veterans Administration (VA) Hospital created the service for WWII veterans returning from the war (“Art Therapy History - When Was Art Therapy Started,” n.d.; “The History of Art Therapy,” 2016). Veterans were struggling with a large number of psychiatric issues, most notably post- traumatic stress disorder (PTSD). Art therapy was utilized to aid in recovering from these challenging maladies (Scope, Uttley, & Sutton, 2017). It was in patients suffering from PTSD where art therapy was first found to be successful (Baker, Metcalf, Varker, & O’Donnell, 2018).
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Due to its successes, art therapy grew rapidly from its origins in the military; and, by the mid-20th century, many hospitals and free-standing centers developed functional art therapy programs which have expanded rapidly since that time (Brady et al., 2017). Today, art therapy is widely practiced with literature supporting its use for a variety of conditions including psychosis, cancer, stroke, dementia, traumatic brain injury, autism spectrum disorder and chronic pain. It is important to note that the patient does not need to have skill in art to find the art therapy exercises rewarding and worthwhile (“About Art Therapy,” 2017). Art therapists and art therapy centers exist in most major medical and psychiatric hospitals as both an outpatient and inpatient service. Art therapy also is offered in residential treatment centers, halfway houses, shelters, schools, correctional facilities, elder care facilities, pain clinics, universities, and art studios across the United States (“Art Therapist Locator,” n.d.; Kreisler & Horton, 2019).
Art therapy can now be seen in a number of productions throughout popular culture. In his early book entitled Musicophilia, famous author and neuroscientist Oliver Sacks discusses a number of individuals who have developed musical talent after injury, such as a forty-two year old man who became a pianist after being struck by lightning (Sacks, 2008). The novel Speak, which has since been adapted into a film starring Kristen Stewart, tells of a high school student who turns to art in order to reclaim her voice and identity after suffering sexual assault (Anderson, 2011). The true story behind the novel Sybil, since adapted into a film starring Sally Field, tells of a woman suffering from dissociative identity disorder with sixteen distinct personalities who finds solace and healing through arts and painting (Schreiber, 1973). The book The Broken Jar chronicles the work of a man who became a watercolor artist after being diagnosed with Alzheimer’s disease and has since been exhibited around the world (Potts, 2006).
Increasing evidence to support the use of art therapy continues to be published with recommendations to make the practice more widely available (Jensen & Bonde, 2018). Art therapy has now been recognized as a profession since 1991 (Stuckey & Nobel, 2010). Art therapists are required to receive at least a master’s degree in the field from a program accredited by the Accreditation Council for Art Therapy Education, part of the Commission on the Accreditation of Allied Health Education Programs (CAAHEP), according to standards established by the American Art Therapy Association (“Becoming an Art Therapist,” n.d.). Programs confer a degree of ATR or ATR-BC. Completion of a program requires a minimum of 24 semester credit units in art therapy as well as 1,000 direct client hours (Kreisler & Horton, 2019).
What is Art Therapy? Art therapists are trained to utilize a variety of techniques in either group or individual settings to aid their patient populations. Therapy sessions can be wide ranging in content. Therapists may utilize methods such as drawing, painting, sculpture, clay molding, collage making, music, dance, creative expression, literature, and free expression to help their patients (“About Art Therapy,” 2017; “Art Therapy,” n.d.; “Art Therapy History - When Was Art Therapy Started,” n.d.). Material selection can be very important with age and gender being taken into account. Many times colorful, large materials, such as pastels, can promote greater expression; while crayons may be viewed as childlike or cause an adult patient to regress to a childlike state. Regardless of the medium used, patients are assured that this is a judgment free space and prior artistic ability is not necessary (Kreisler & Horton, 2019). In a conversation with an art therapist, the therapist reported one patient entered a session by stating “I don’t do
Journal of Health and Human Experience Volume V, No. 1 35 Articles
art. I can’t draw.” At this point the goal was to have her come in, relax, and simply observe. By allowing her to feel comfortable in a group setting, she later confessed that the therapist was the first person to allow her to “feel human again” after an assault. On a very basic level, “the art can make [people] feel. It touches on things inside and allows them to release that” (Kreisler & Horton, 2019).
Art therapy directives can vary widely, depending on the issues the patient is working through. For example, in psychiatry the directives are often built around sorting out feelings and emotions whereas in substance abuse treatment the focus may shift towards spontaneity, cooperation, confronting denial, and improving self-esteem. Art may allow patients a method of expressing themselves, even when they have lost their verbal skills. Art therapists often refer to themselves as “the sneaky therapists” in accomplishing these goals as they often hide the session objectives within the activity (Kreisler & Horton, 2019). For example, one art therapist explained that she keeps beads for a bracelet-making exercise in a single container, forcing participants to interact and cooperate. Eventually, they can reveal the objectives of a session after they, the patients, have already experienced it to reach an “aha!” moment.
Sample Sessions Led by Art Therapists Art therapists have a wide-ranging list of activities to use during their sessions. For example, slime making allows patients to create a tool for stress relief from materials that are messy and disorganized individually, so as to prompt discussions on teamwork and cooperation. On Valentine’s Day, patients may write(Figure love 2) letters to themselves to bring their focus to themselves and what they have, as opposed to their feelings of loneliness. A grid-based board of paintings with each patient given one square to work on during an admission may provide a visual demonstration of patience, respecting other’s space, and, when a square is left incomplete, being comfortable with tasks left unfinished in life. A substance abuse session asking participants to create a clay sculpture of their addiction if it were a creature may elucidate An individual’sAn individual’s clay-made clay-made sculpture from sculpture an art therapyfrom an session art therapy designed session for substance abuse patients. Participants were asked to create a sculpture to represent and open discussion on howdesigned they feel for their substance addiction abuse would patients.look if it were Participants a creature. Thiswere patient asked represented to create deeply seeded internal his aa ddictionsculpture as ato snake represent-monster how with they the wordsfeel their “life”, addiction “death”, and would “drugs” look inscribed if it emotions. on it.were a creature. This patient represented his addiction as a snake-
monster with the words “life”, “death”, and “drugs” inscribed on it.
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Art therapists may also play a game of Pictionary, utilizing a drawing of a boat with an anchor lodged into the sand far below the water’s surface. Anchors can be a powerful image. Some see them as holding the boat steady amidst waves where others may see them as holding the boat back from its journey. This drawing may prompt discussions on permanence in patients’ lives and what their personal, metaphorical anchors are. For some, their anchors are their family holding them steady with support whereas for others a person close to them may be holding them back from pursuing their dreams. The discussion of anchors may take positive or negative directions. Both interpretations are invited. This is then followed up by individual decoration of wooden anchors to identify the things that keep them in place. A patient who participated in this specific session phrased its purpose best when she began crying at the conclusion: “I had all these [doctors] asking who my supports are and what are my coping skills. But looking at [this] and seeing [them] makes it physically there for you. Now I can’t back away from it. This way it does not go in one ear and out the other.”
Another popular art therapy session involves the decoration of a box. Participants are invited to paint the outside of the box to represent the way they(Figure feel 3) others see them, and the inside of the box to represent the way they see themselves. One young woman with an outgoing and loquacious personality was known for being very friendly. At the time, she was going through a particularly traumatic breakup and was struggling with depression. During this activity, she notably painted the exterior of her box with a beautiful rainbow spread while choosing to leave the interior empty, to represent the way she felt inside. This activity opened a discussion about feelings she often denied or ignored, allowing her to improve her coping strategies.
One notable patient was a child from an abusive A patient’sA patient’s creation creation when participating when participating in a box design artin thea boxrapy activity.design art Participants were asked to decorate the box with the exterior representing how others household whose parents seetherapy them and activity. the interior Participants representing howwere they asked see themselves to decorate. This the patient box with had lost custody. Over the representedthe exterior her extroverted, representing loquacious how exterior others with see athem bright and and beautiful the interior rainbow course of a year, he utilized watercolor spread while leaving the interior empty to represent how she felt while strugglingrepresenting with depression. how they see themselves. This patient represented art therapy sessions to learn her extroverted, loquacious exterior with a bright and beautiful to sew. Initially he worked to rainbow watercolor spread while leaving the interior empty to represent how she felt while struggling with depression.
Journal of Health and Human Experience Volume V, No. 1 37 Articles make a blanket as something to wrap himself in, to feel cared for, when his mother was more absent. The blanket evolved into creating a shirt, which he often wore when his mother was not present. After one particularly negative visit from his parents, he tore the sleeves off the shirt and turned it into a vest. Through therapy sessions, it became clear to him that he was searching for a replacement, of sorts, for his absent mother. Eventually, he progressed to recognize the clothing as his own creation and that wearing it began to represent a pride in himself and marked an evolution towards independent self-confidence.
How Art Therapy Works The manner in which art therapy works is still unclear, but it is theorized that the tool provides patients with a wider social network, an improved understanding of self and others, and the opportunity for patients to confront mental health issues while gaining self-confidence and self-esteem (Brady et al., 2017). Many believe that art therapy proves beneficial by allowing people to express their internal feelings and psychological status in a positive manner to both relieve the toll on their selves and to support their social relationships (Eum & Yim, 2015).
A significant theory as to the mechanism of art therapy lies in the potential of art to disproportionately activate an individual’s right brain hemisphere, as opposed to the commonly dominant, regimented, and logical left brain, thereby increasing their ability to express themselves emotionally and creatively (O’Brien, 2004). In traditional neuroscience, the lobes of the right brain are largely responsible for imagination, visualization, rhythm, and the arts; whereas the lobes of the left brain work for logic, mathematics, and factual or linear thinking (Pietrangelo & Weatherspoon, 2017). By this theory, health issues such as trauma and dementia are thought to preferentially impede the left brain, and to improve an individual’s attraction to the arts (O’Brien, 2004; Schneider, 2018). Thus, in patients with dementia affecting the left side of the brain, creativity is seen to increase even as their ability for speech diminishes. This may allow a further method of communication even in patients with no prior artistic experience (Sackett, 2018). There remains a lack of scientific literature to support these theories, and further evidence-based work is needed to better understand the mechanism and potential of art therapy.
The Benefits of Art Therapy Since its introduction, art therapy has been found to be especially impactful for a wide variety of patients. Art therapy has been shown to support patients in building confidence, reducing social isolation, and, more importantly, providing a positive endeavor with the opportunity for self-expression by allowing a stress-free environment without fear of judgment (Brady et al., 2017). Art therapy experts believe the practice provides a meaningful vehicle for individuals to express their personal history while relating to their inner self, noting clinical benefits for not only for the patient, but also for staffers and family members (Blomdahl et al., 2016; Dean, 2016). In children’s hospitals, positive outcomes have been observed in emotional, developmental, and cognitive growth (D. Waller, 2006). The National Institute for Health and Clinical Excellence (NICE) asserts that the use of art therapies can actually encompass an even wider range of treatments including art therapy or art psychotherapy, dance movement therapy, body psychotherapy, drama therapy and music therapy. It is also asserted that these processes further improve or even enhance the patient’s creativity, emotional expression, communication, insight, and ability to relate to themselves and others (Attard & Larkin, 2016). Furthermore,
38 Volume V, No. 1 Journal of Health and Human Experience Articles mental health professionals persistently advocate the innumerable strengths of art therapy, highlighting the improvement of communal ties and accentuating social gratification provided by clients’ support systems (Brady et al., 2017).
Patient perspectives may provide a clearer and even greater understanding of the strengths of art therapy in their treatment. When asked, patients reported that they appreciated the wide scope of possibilities in art therapy, felt enabled to discuss elements of their experience normally not discussed, and even felt the therapy helped to give their life a purpose by allowing them to feel “listened to and understood” (Brady et al., 2017). From these statements it is evident that art therapy service users enjoy the artwork and that it creates an environment that allows them to explore thoughts buried deep within their psyche. Art therapy treatment restores patients’ hope and enables them to recoup and recover from the injury or pain. Artistic exercises have clearly been shown to provide significant benefits and a well-rounded improvement in overall health.
In spite of the many benefits that have been reported from art therapy, much of the literature remains largely theoretical, with few papers discussing specific outcomes and even those incorporating only small sample sizes thereby limiting generalizability (Stuckey & Nobel, 2010). As initially developed for individuals with PTSD, art therapy proved widely successful (“Art Therapy,” n.d.). PTSD affects millions of individuals worldwide and is characterized by distressing intrusive memories of the traumatic event, high levels of arousal, attempts to avoid the memories and reminders of the event such as nightmares, and negative alterations in cognition and mood. Art therapy has shown success in managing this condition by allowing individuals to manifest their inner emotions and to discuss aspects they are often unable to confront via traditional therapy models (Schouten et al., 2015; Walker, Kaimal, Gonzaga, Myers-Coffman, & DeGraba, 2017). The complexity of PTSD remains difficult to treat. While conventional trauma-focused psychotherapy provides a helpful methodology for certain individuals, the availability of alternative treatment options remains essential. Art therapy has been shown to be a viable way in which military veterans suffering from PTSD can creatively process, cope and recover from this form of mental illness (O’Brien, 2004; Schouten, van Hooren, Knipscheer, Kleber, & Hutschemaekers, 2018). For example, a mask-creation exercise with military veterans suffering from PTSD showed many patients using the masks as an opportunity to reflect their self-image and as an avenue for those around them to understand the way they feel, with a significant number reporting alleviation of stress and anxiety through the exercise (Walker et al., 2017).
Today, art therapy is actively used for other psychiatric conditions. It has proven successful for both children and adults at easing major life transitions, relating to all aspects of a patients identity that can take place in the hospital setting (“The History of Art Therapy,” 2016). Art therapies, such as mandala design, collage making, free painting, clay work, and drawing techniques, have shown statistically significant decrease in symptoms of generalized anxiety disorder compared to controls (Abbing et al., 2018), as well as statistically significant decrease in the negative symptoms associated with psychosis (Attard & Larkin, 2016). In spite of this, a large randomized trial did not show significant benefits from a free-expression art therapy curriculum for patients with schizophrenia (Crawford et al., 2012). Incest survivors have reported finding significant catharsis, cohesion, and insight through art therapy (C. S. Waller, 1992). Numerous studies show children with and without disability evidence improved emotional awareness, socialization and decreased anxiety with a variety of art therapy programs
Journal of Health and Human Experience Volume V, No. 1 39 Articles ranging from free expression to drawing (Freilich & Shechtman, 2010; Kearns, 2004; Rosal, McCulloch-Vislisel, & Neece, 1997; Smitheman-Brown & Church, 1996). Individuals with diverse mental health needs have been shown to attain benefits such as increased confidence and motivation even from home-based art therapy programs (Jones, Warren, & McElroy, 2006). Incarcerated individuals have also evidenced decreased depression, as per the Beck Depression Inventory Short Form (BDI-II), and improved socialization skills following an art therapy initiative (Gussak, 2006).
Art therapy has expanded far beyond its initial use in the field of psychiatry. Many other fields of medicine have begun to see benefit in the use of art therapy. Individuals with a variety of chronic illnesses have been shown to experience improvements in expression of grief, decreased depression, and improved social networks with experience-based art therapy (Reynolds & Prior, 2003; Stuckey & Nobel, 2010). Individuals on hemodialysis who participated in an art therapy program --- which included painting, poetry, crocheting, crafts, and music --- have been shown to have decreased weight gain, greater carbon dioxide content, greater phosphate levels, and decreased rates of depression as measured by the SF-36 questionnaire (Ross, Hollen, & Fitzgerald, 2006; Stuckey & Nobel, 2010). In oncology, literature has shown a significant overall increase in quality of life, as measured by the EORTC-QLQ-C30 quality of life domains, and lowered instances of depression, according to the Hospital Anxiety and Depression Scores (HADS) in individuals undergoing paint-based art therapy during chemotherapy (Bozcuk et al., 2017; Nainis et al., 2006; Stuckey & Nobel, 2010). A number of studies have shown decreased stress levels, decreased hospital stays, and increased quality of life in patients with coronary artery disease and those recovering from open heart surgery who participate in music and drawing therapy (Doğan & Şenturan, 2012; Guillemin, 2004; Stuckey & Nobel, 2010). Additionally, art therapy has a long history of success in management of chronic pain syndromes (Baierlein, Masuch, Gosch, & Singler, 2019; Müller-Busch, 1991).
One field of medicine that has taken particular interest in art therapy is neurology. Many patients with neurological disorders report a sense of hopelessness which art therapy has been effective in improving, as measured by the Beck Hopelessness Scale in a sample of 50 patients (Akhan, Kurtuncu, & Celik, 2017). Individuals post-stroke have been found to have reduced anxiety levels after clay work (Ali, Gammidge, & Waller, 2014), decreasing rates of depression after literature therapy (Eum & Yim, 2015), improving emotional intelligence and cognition from a variety of art therapies (Kim, Kim, Lee, & Chun, 2008), and improving physical function and quality of life with creative art therapy (Kongkasuwan et al., 2016). Early studies of art therapy involving discussion and clay modeling have shown significant decrease in obsessive compulsive thinking, phobia, and anxiety among a small group of patients with Parkinson’s disease (Elkis- Abuhoff, Goldblatt, Gaydos, & Convery, 2013). A blinded study of 60 patients with epilepsy found a preference to certain types of drawing based on their form of epilepsy (Anschel, Dolce, Schwartzman, & Fisher, 2005). However, art therapy showed only qualitative benefits for children with epilepsy (Stafstrom, Havlena, & Krezinski, 2012). Art therapy based in voice and sound have been shown to increase speech intelligibility in children with cerebral palsy (Wilk et al., 2010).
Art therapy has a long history with individuals suffering from dementia, with research suggesting that dementia can even unleash an unknown creativity in patients (Sackett, 2018). Individuals with mild cognitive impairment have developed improved cognitive function and daily living ability with creative expression therapy as an adjunct to standard cognitive therapy (Zhao, Li, Lin, Wei, & Yang, 2018). Visual art, music and dance have additionally been
40 Volume V, No. 1 Journal of Health and Human Experience Articles proposed as a method to improve the psycho-social care in patients with dementia (Schneider, 2018). Patients who experienced training in expressive arts have also been shown to have better cognitive function and physiologic health than their peers (Noice, Noice, & Staines, 2004; Stuckey & Nobel, 2010). In spite of these reported benefits, research on the effects of art therapy in neurologic disorders remains limited and additional studies are needed to draw further conclusions and generalizability (Deshmukh, Holmes, & Cardno, 2018). Further research is needed to better understand the constraints and potential of all forms of art therapy in many disparate patient populations.
Indeed art therapy in dementia has been gaining momentum to the point that it is now being covered in the lay media. An example is the recent article in the Washington Post entitled “Changing the ‘tragedy narrative’: More people try joyful approach to Alzheimer’s” (Bahrampour, 2019). In this article the author outlines a series of approaches that patient’s living with Alzheimer’s disease can use to not only cope with the disease but to learn to thrive despite the disease. Indeed, that article depicted numerous families that have been able to declare victories over the Alzheimer’s diagnosis by having the individual with Alzheimer’s disease finding joy they did not think they could find. This was often through poetry, music, dancing and other forms of art. These various activities allowed the individual to feel important and to have a purpose.
Art in the Face of Brain Injury In order to emphasize the potential benefits of art therapy for patients, we include vignettes of two individuals who, following significant brain injury, turned to art for healing in different ways. Both of the individuals are currently successful artists, though they came to the field in vastly different ways and paint for vastly different reasons. These artists are happy to include their works in this article to enrich the discussion of art therapy. All identifying information for (Figure 4) them has been modified or left out of this discussion to protect their identities. Any readers interested in their works to recognize the talent of these individuals should contact the first author to arrange potential connection with the artists.
Vignette #1 In the late 1970s, soon after graduating high school, P.H. was driving with a friend. He was forced to veer the car off the road, leading to the vehicle being flipped three times before he was thrown from it. While his friend was uninjured,
P.H. suffered fractures to his wrist, Gone, 2016 (16x20, oil on reclaimed canvas). A painting by PH symbolizing the sudden ankle, ribs, and skull. He lost a passingGone, of his2016 brother (16x20, from overdose. oil on The reclaimed broken window canvas). pane is meant A paintingto represent significant amount of blood and hisby soul PH passing, symbolizing where the rain the drops sudden represent passing tears. of his brother from spent the better part of a month overdose. The broken window pane is meant to represent in the hospital. At the time, he his soul passing, where the rain drops represent tears.
Journal of Health and Human Experience Volume V, No. 1 41 Articles was not told of any neurologic injury, but he has significant amnesia surrounding the accident. On discharge, he returned to college and, although having missed a month of his semester, he was able to graduate on time with a degree in business. He recalls beginning to face depression around this time, eventually becoming increasingly dependent on alcohol. From then, P.H. had a successful 30 year career in a variety of positions, most recently as the Vice President of a prestigious bank.
In 2004, as part of his regular follow up with a neurologist, P.H. received an MRI which showed a 2cm lesion above the left eye with a fracture of the orbital socket puncturing his left frontal lobe due to his history of severe head trauma. Not long after, he began to notice increasing difficulty focusing and planning. His memory was progressively worsening. P.H. quit drinking in 2007, but his difficulties progressed, and he began to experience complex partial auditory seizures of his temporal lobe. By this time his memory and attention were becoming worse; and, following evidence of disability on neuropsychology testing, he retired from business in 2010. (Figure 5)
P.H. recalls his grandfather who would often show him works as a child, but when he began painting after his retirement, he had no formal training in the arts. He immediately came to love his new hobby. P.H. could paint for hours without losing focus. He shares how he would get lost in his painting and would feel grounded MattersMatters of ofthe the Heart, Heart, 2016 2016(18x24, (18x24, Oil on Canvas). Oil on A Canvas).painting by A PH painting depicting byhis PH daughter following the death of her boyfriend. in ways he had not depicting his daughter following the death of her boyfriend. felt in a long time. The paintings would calm him and they allowed him to process his emotions. He credits his art to helping him not only handle the lingering symptoms of his injury, but also to helping him cope with the struggles of life today. Since 2010, he has gone through a series of marital troubles ending in divorce as well as struggles parenting his daughter. Painting, though, has been a constant source of meditation for him as he works. He looks at his works and can see himself in them as he contrasts his light, friendly personality with the darkness of his internal anxiety from the many hardships he has faced. As situations have become more complicated, so have his paintings; but they are always there to ground him and center him. Since beginning his work as a painter, P.H. has completed an Artist in Residence program in 2016 and has shown his work in a number of galleries since. He remains incredibly proud of his work and has trouble choosing his favorites pieces of his works; but he is happy to contribute a number of them to this article.
42 Volume V, No. 1 Journal of Health and Human Experience (Figure 6) Articles
Vignette #2
D.D. is a right-handed man in his early 70’s, and a lifelong artist. He developed a fascination with art as a young child and has been drawing and painting since. He attended a fine arts high school and majored in arts in college before embarking on a long A painting byA DD, painting 2018. Acrylic by DD, on 2018.Canvas, Acrylic 36x48. on Canvas, 36x48. and successful career in graphic design and advertising. Even while working regularly in advertising at various levels, he has held a number of professorships in arts and has always taught classes on the side. He recalls art always being a beautiful and fascinating avenue for him to visualize what is in his mind. He uses colors, detail, and symbolism to show the world around him in the way he sees it. Still, all of his paintings primarily come from his own mind.
Approximately a decade ago, at the age of 60, D.D. suffered a large stroke of his left middle cerebral artery. He (Figure 7) quickly lost use of his right arm and leg and developed a significant Broca’s (nonfluent) aphasia. Immediately after the stroke, he recalls not being able to move the right side of his body at all and a complete loss of speech. His family reports that his attention changed drastically following the stroke, where he now has difficulty focusing for long periods or attending to the things around him. Through all of A painting byA DD, painting 2018. Acrylic by DD, on 2018.Canvas, Acrylic 24x36. on Canvas, 24x36.
Journal of Health and Human Experience Volume V, No. 1 43 Articles (Figure 8) this, painting became his one constant. Even while in the hospital recovering, he would try to draw, painstakingly teaching himself to become left-handed in hopes of maintaining his identity.
Now, painting has become D.D.’s major avenue to communicate. Even as his speech has returned to a small extent, he remains frustrated with Photo by Naamon Horn his inability to speak with others. Painting A painting byA DD, painting 2014. Acrylic by DD, on 2014.Canvas Acrylic24x36. on Canvas 24x36. allows him to put his mind, with all of his thoughts and wild imagination, out into the world so that others are able to find a window to relate with him. Paintings are a creation that he can call his own, and while painting he is able to focus in a manner he is otherwise unable to. A single painting may take as short as six hours or as long as days to complete, but in all that time he is able to relate with the outside world in the best way he knows how.
Conclusions The origins of art therapy were primarily geared towards solving psychological disorders. The initial practitioners of art therapy wanted nothing more than a way to give patients an opportunity to effectively handle trauma, abuse, grief, anxiety, and eating disorders (“The History of Art Therapy,” 2016). However, the trajectory of the discipline has paved the way for complete personal expression by the ill, offering the patient a vehicle to verbally and non- verbally communicate their feelings and thoughts. Ultimately, this crafty communication tool clears the way for a patient working with a trained therapist to make sense of their lives (Brady et al., 2017). The use of art therapy as a therapy tool helps to promote healing and provides a triumphant feeling of achievement for the patient (Brady et al., 2017).
The feedback from providers and patients currently using art therapy is supportive and encourages further study and exploration of this non-pharmacologic approach (Scope et al., 2017). There is still much to research in the field of art therapy in order to fully understand its strengths and potential. Many systematic reviews emphasize that exploring the efficacy of art therapy, particularly in regard to specific disorders, is necessary to economically and ethically support its delivery (Ali et al., 2014; Attard & Larkin, 2016; Baker et al., 2018; Deshmukh et al., 2018; Müller-Busch, 1991).
44 Volume V, No. 1 Journal of Health and Human Experience Articles
Considering the positive outcomes of art therapy treatments and the results of current research, it is apparent that art and medical treatment and recovery can go hand-in-hand. The future of healthcare and art therapy will lead to even more innovative techniques that will improve the best practices for treating the ailments of people who are not holistically healthy. We are confident that further research and discussion on the role of art therapy will ease the promotion of using the arts in healthcare, with art therapy offering a new approach to treatment and adding a much needed humanism to the practice of medicine and healthcare.
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Journal of Health and Human Experience Volume V, No. 1 49 Articles
Functional Medicine: A Holistic Treatment Approach to the Peaceful Healing Journey
Pushpanathan Muthuirulan, PhD Research Associate Department of Human Evolutionary Biology Harvard University, FAS 55A, Peabody Museum, 11 Divinity Avenue, Cambridge, MA Tel: (301) 674-3108 Email: [email protected]
Author Note This article was prepared based on the author’s interest. The contents of this article do not reflect the policy or opinions of the author’s university or the agencies that the author serves. The author has no financial conflicts of interest. All correspondence on this article is to be addressed to the author via his email found above.
Abstract A critically important emphasis is placed today upon educating and informing all citizens of the realities and horizons of health and healthcare. One newer area of scientific inquiry in healthcare is that of functional medicine. This article provides a general introduction to functional medicine, its impacts and its importance for improving health. This article also provides needed information regarding chronic diseases, and the potential that functional medicine has for health care cost reductions. Functional medicine is a personalized holistic healing approach that offers immeasurable value in treating a multitude of human health conditions. Functional medicine primarily focuses on the optimal functioning of patient body and organs rather than attacking diseases directly. In recent years, functional medicine practitioners are aiming to restore a patient’s health from complex chronic diseases by spending time with patients, listening to their medical histories and understanding patients’ genetic or environmental interactions and life style factors. This holistic healing approach takes into account biochemical individuality based on genetic and environmental uniqueness that supports the unique expression of health as positive vitality. Thus, functional medicine offers an effective and practical way of approaching healthcare that would successfully meet patients’ health challenges and provide lifelong optimal health. Keywords: Chronic disease; functional medicine; therapeutic partnership; holistic treatment; quality healthcare
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Introduction Chronic diseases are persistent or long-lasting health conditions that contribute to about 38 million deaths every year. Such diseases hinder independence and increase the potential of healthy individuals being made to suffer disabilities (WHO, 2014). Chronic diseases to humans include arthritis, asthma, cancer, heart disease, diabetes, stroke, viral diseases (Hepatitis, HIV) and chronic respiratory problems (e.g. COPD) that can lead to hospitalization, long-term disability, poor health related quality of life and often death. Certain chronic conditions occur together more frequently due to their high prevalence rates and have been linked with increased morbidity and mortality (Diederichs et al., 2010).
The term multiple chronic conditions (MCC) represents the presence of one or more chronic conditions in humans that emerged as a global public health threat affecting 1 in 3 of all adults and 2 in 3 of population ages 65 and above (Gerteis et al., 2014). In the United States, ~ 25% of adults are suffering with at least two chronic conditions that can contribute to disease, disability, reduced physical activity and mental illness (Ward, 2016). In 2016, seven out of 10 deaths globally were caused by chronic illness, particularly cancer, cardiovascular diseases, chronic respiratory diseases and diabetes. Chronic diseases are known to cause half the deaths worldwide, 80% of which occur in low-income and middle-income countries (Nabel et al., 2009).
In recent years, chronic disease medical epidemiologists are paying greater attention towards advancing the health of the public by fostering a research-based approach to the prevention and management of chronic diseases. The majority of United States (US) healthcare and economic costs associated with medical conditions are for the costs of chronic diseases and associated health risk behaviors. Nearly 84 % of total healthcare spending in 2006 was for 50% of the population who have one or more chronic medical conditions (CDC, 2014).
Although common and costly, most chronic diseases are preventable. Many chronic diseases have been associated with lifestyle choices that are within individuals’ own hands to change. Eating nutritious food, physical exercise and avoiding tobacco can help individuals to better manage their illness, avoid complications and prolong their lives (Schmidt et al., 2016). In addition, a patient’s health and well being can also be improved by alternative medicine that would make significant differences to the power of existing therapies in treatment of chronic diseases.
What Causes Chronic Diseases? The risk determinants of chronic diseases are well established and well known. A small set of modifiable risk factors are responsible for most chronic diseases in both men and women (WHO, 2014). For example, an unhealthy diet, physical inactivity and tobacco intake are some of the factors that emerge in modifiable intermediate risks such as increased blood pressure (hypertension), abnormal blood lipids (dyslipidaemia), elevated glucose levels (hyperglycemia), overweight gains and obesity. The major modifiable risk factors in strong association with non-modifiable risk areas (e.g. age and heredity) explain the major underlying causes for most chronic diseases, including heart diseases, stroke, chronic respiratory disorders and cancers. Other major risk factors have been identified that explain the remaining burden of chronic diseases. For example, alcohol use is the leading risk factor for global disease burden that can cause substantial health loss, but its relationship to chronic disease is highly complex (Griswold et al., 2018). Other risk factors for chronic diseases include infectious agents that lead to certain types of cervical
Journal of Health and Human Experience Volume V, No. 1 51 Articles and liver cancer, and environmental factors (e.g., air pollution) that contribute to a wide range of chronic diseases ranging from asthma to chronic respiratory disorders. Besides these causes, other underlying determinants of chronic diseases are genetic factors, childhood risk, socioeconomic conditions, cultural change, ageing, poverty and psychosocial stress (WHO, 2014).
Consequences and Approaches to Manage Chronic Diseases A rise in prevalence of chronic diseases not only affects a nation’s health and health care systems, but also significantly increases healthcare costs. Nearly 70 % of US health care spending is used for the treatment of patients with one or more chronic diseases. The economic effects of chronic diseases extend beyond the healthcare costs spent on treatment procedures. Furthermore, the increasing incidence of chronic diseases reduces the economic productivity of a nation. For example, a groundbreaking study reported by Milken Institute showed that the annual impact on the US economy of chronic diseases is estimated to be more than $1 trillion, which could increase to $6 trillion by the middle of the century. The health catastrophe induced by chronic disease is also an underlying cause of poverty that hampers the economic development of a country (Nabel et al., 2009).
Since, chronic disease is shortening our life expectancy, disrupting our quality of life, bankrupting governments and threatening the life of future generations, it is absolutely essential that the national and international public health communities make chronic disease prevention a worldwide priority. The most effective and resource-efficient long-term management of chronic diseases is one of the greatest health-related challenges facing people, health care professionals and society (McPhail et al., 2016). The debilitating effects of chronic diseases can be prevented, delayed or mitigated. In general, half the deaths caused due to chronic diseases are preventable if the major underlying causes of the diseases are known. Several approaches are available to prevent and manage chronic diseases. Unfortunately, conventional medicine has failed to manage common chronic illness, which warrants a new alternative approach to healthcare that would more effectively tackle chronic disease challenges (Roy et al., 2010).
There are two major reasons why conventional medicine has failed to address chronic disease prevalence. First, the application of conventional medicine to the modern problem of chronic diseases has led to a medical system that only suppresses disease symptoms with drugs rather than addressing the root cause of the problem. Second, the model of how quality health care is delivered to patients is also greatly problematic (Kresser, 2017, https://kresserinstitute. com/two-reasons-conventional-medicine-will-never-solve-chronic-disease/).
Unfortunately, our current medical system makes quality care to patients extremely difficult. For example, an average office visit of patients with a primary care provider is ~10 minutes. If a patient has multiple chronic disease conditions, it is almost impossible for the primary care physician to provide quality care to patients during this 10-minute visit. In order to truly address chronic disease challenges, we require a different model of delivering quality care to patients suffering with chronic illnesses. The new model of providing quality care should encourage practitioners to have longer visits with patients to understand patient medical history completely before prescribing drugs and to establish collaborative care. In this experience, doctors work with a patient as a “therapeutic partner” rather than the physician being a licensed “expert” to bring solutions to a patient’s medical conditions.
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What is Functional Medicine? Why Do We Need It? Functional medicine is a form of alternative medicine described by proponents as an interaction between environment and the gastrointestinal, endocrine and immune systems (Ehrlich et al., 2013). Functional medicine encompasses a treatment approach that addresses the underlying cause of a chronic illness using a system-oriented approach that involves both practitioners and patients to engage in a therapeutic partnership. Functional medicine is an advancement in the practice of medicine that better addresses the pressing needs of improving care for chronic diseases. By shifting the conventional disease-centered focus to a patient- centured approach, functional medicine addresses the medical conditions of the whole person rather than just focusing on an isolated set of symptoms (David, 2016).
Functional medicine supports the unique expression and vitality of health care and it allows practitioners to search for the root cause of an illness rather than simply treating the symptoms of the disease (https://www.drkarafitzgerald.com/about/functional-medicine/). For example, depression can be caused by multiple factors, including inflammation. Similarly, inflammation can lead to a number of medical conditions, including depression. In this case, precise treatment of each cause depends upon the individual’s genes, environment and lifestyle. Treatment based on an isolated set of symptoms for depression without treating the root cause of the illness will not have long lasting benefits beyond the suppression of symptoms. Since our modern society is experiencing a drastic increase in the number of chronic diseases every year and our acute medical care approach lacks the proper tools for preventing and treating complex chronic diseases, it is vital that active steps should be taken to implement functional medicine and to improve a patient’s health. It also can reduce medical costs.
How is Functional Medicine Different? Functional medicine is different from conventional medicine as it involves detailed investigation of the origin, prevention and treatment of complex chronic diseases. The hallmark of functional medicine includes patient-centered care, an integrative science-based health care approach, and integration of best medical practices (Maizes et al., 2009; http://www. eatwelldaily.com/new-page-56/). In patient-centered care, practitioners listen to the patient’s complete medical history and tailor treatments based on an individual’s unique needs (Reynolds 2009). The focus of functional medicine in the perspective of an integrative science-based healthcare approach is to look into the unique genetic makeup of patients along with internal (mind, body and spirit) and external (physical and social environment) factors that affect the total functioning of an individual’s body to cause illness. Furthermore, functional medicine integrates traditional western medical practices and focuses on prevention of chronic diseases through balanced nutrition, diet and exercise. It also involves prescriptions of drugs/botanical medicines and the use of stress-management techniques (Rao, 2015) Thus, functional medicine offers a powerful alternative operating system and clinical model for the diagnosis, treatment and prevention of chronic diseases. This would replace the ineffective acute-care model and brings new hope to disease sufferers.
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Allopathic vs Functional Medicine Allopathic medicine refers to modern scientific systems of medicine that make use of pharmacologically active agents or physical interventions to treat or suppress symptoms of diseases or conditions. Allopathic medicine is absolutely beneficial for acute care and life-saving emergency care. If a person has a heart attack, bone fracture, suffers from wounds/infections or urgently needs surgical removal of a cancerous tumor, allopathic medicine is the best option. Allopathic medicine has excellent imaging and diagnostic technology that can save the lives of patients quickly with appropriate care. The major disadvantage of allopathic medicine is that it ignores the question ”why.” For example, if a person goes to the doctor for heartburn, the doctor can immediately prescribe antacid without wondering why the patient developed heartburn in the first place. Is an antacid going to permanently cure the heartburn? The answer to this question is no. Similarly, if a person has an infection or wound, will the band-aid ultimately fix this problem? No. A band-aid does not cure infection or a wound, but only controls the outer manifestation. The other potential issue with allopathic medicine is that most drugs prescribed by physicians have side effects that can disrupt body homeostasis and lead to severe health complications (Van Rooyen et al., 2015). To overcome these issues, some physicians are now practicing functional medicine to treat imbalances in the autonomic control systems of an individual. Functional medicine therefore is personalized rather than based on treatment protocol for a particular symptom or disease. In functional medicine the main cause of diseases can be traced to problems in endocrine, digestive, hormonal and immune systems that cause chronic stress to our bodies. Once there is an imbalance or problem in any of the biological pathways, compensations occur in other biological pathways in order to resolve the problem. These compensations cause changes to other pathways creating a ”cascading effect;” and eventually, over many years if balance is not restored, can create minor aggravating symptoms that turn into full-blown diseases. Uncovering the imbalances in homeostasis early enough would therefore likely prevent disease.
Integrative Medicine vs. Functional Medicine In recent years various forms of alternative medicine, such as functional medicine and integrative medicine, have been gaining increasing attention. It is believed that both functional and integrative medicine are considered as the future of medicine, as these approaches use holistic ways of treating patients rather than just concentrating on an isolated set of symptoms for diseases (Bland, 2015). Although both disciplines share similarities, there are certain factors that make each approach unique.
Integrative medicine is a healing-oriented approach that takes account of all aspects of life, including lifestyle habits of patients. Integrative medicine practitioners believe that many chronic diseases are the results of poor life style choices. In the integrative approach, a patient’s mind, spirit, community and body are taken into consideration to enhance healing and well- being. Integrative medicine uses a combination of modern healthcare practices to diagnose and treat patients suffering with chronic diseases. The practice of integrative medicine includes treatments such as acupuncture, yoga and massage. It also uses effective interventions that are more natural and less invasive to patients (Sierpina & Dalen, 2013).
Alternatively, in the functional medicine approach, each patient is considered as distinct and unique. Similar to integrative medicine, functional medicine treats the whole individual
54 Volume V, No. 1 Journal of Health and Human Experience Articles rather than just the disease. In functional medicine, an individual’s genetic and environmental details are obtained thus providing in-depth knowledge of the patient’s health status (Bland, 2015). Functional medicine has become more popular, even with some leaders promoting the opening of an Institute of Functional Medicine (https://www.ifm.org/find-a-practitioner/) that would help patients to locate functional medicine practitioners anywhere in the world. Thus, functional medicine, without doubt, holds the future of medicine.
Integrating Functional Medicine with Traditional Chinese Medicine Traditional Chinese medicine (TCM) is a form of Eastern medicine developed over more than 2,500 years of Chinese medical practice. The TCM approach originated in China thousands of years ago, but still it is practiced in many of parts of China along with modern medicine. TCM practitioners use acupuncture, herbs, diet, cupping and qigong to treat complex health conditions.
TCM is based on two theories: The first theory maintains that all the body's organs are mutually supporting and interconnected with each other. Therefore, in order to maintain a healthier life, an individual's organs and their functions should be in balance. This balance is maintained, in part, by harmonizing yin and yang, two opposing but complementary energies thought to affect all of an individual’s life. The second theory of TCM says that the vital energy (called "qi" or "chi") flows throughout the body through certain pathways (or "meridians"). According to this theory, diseases or health conditions may arise when the flow of qi is blocked, weak or excessive. Restoring the qi flow imbalance is considered to be essential for balancing yin and yang and, in turn, achieving the healthy functioning of the body. For example, it was believed that acupuncture restores healthy circulation of qi, which flows in certain channels or meridians, just as blood flows in the blood vessels, thereby restoring health.
To date, there have been only a few clinical trials suggesting that TCM can treat disease, so it is highly advisable not to self-treat or use it in place of standard care (Fung & Linn et al., 2015). It is always important for patients to consult their physicians to weigh the pros and cons before proceeding with TCM therapy. However, TCM has more things to offer therapeutically than the nutritional approach of functional medicine alone. Therefore, integrating functional medicine with a TCM approach could offer an effective and powerful line of therapy for addressing modern illnesses.
The Benefits of Functional Medicine Functional medicine offers an immeasurable value in treating a multitude of health condition. Patients with a wide variety of chronic conditions can benefit from the functional medicine approach. This approach provides an alternative protocol, particularly for low- or middle-income people who cannot afford surgery or pharmaceuticals. It establishes an expanded view of the human body by providing a scientific basis for understanding mind-body connections. It also enables practitioners to develop new approaches to patient evaluation and diagnosis using additional tools of investigation in order to provide a holistic view of the person. Finally, functional medicine is a refined model of modern medicine that creates a unique environment for healing patients based on the full potential of the human being rather
Journal of Health and Human Experience Volume V, No. 1 55 Articles than focusing only on specific symptoms or diseases (David, 2016). Functional medicine also acknowledges the biochemical individuality of each human being, based on concepts of genetic and environmental uniqueness. The other benefits of functional medicine include working with complex chronic health conditions, supporting wellness, personalized treatment to specific health needs, minimizing side effects, emphasis on doctor-patient relationship and safety (Ross, 2009). Thus, functional medicine is true healthcare with tremendous benefits that offers patients a much better approach to improve health and reduce healthcare costs.
Functional Medicine as a Clinician’s Tool Box in Therapeutics Functional medicine physicians are trained to evaluate the major underlying causes for complex, chronic illness and to apply appropriate therapeutic strategies that involve diverse tools such as nutrition, diet and exercise both to treat and manage chronic illnesses in patients. It provides care that is patient-centered, personalized, and healing-oriented. It emphasizes therapeutic approaches or relationships to promote human health as a positive vitality, and beyond just concentrating on the symptoms of diseases. In functional medicine, a comprehensive treatment plan is formulated by identifying clinical imbalances through patient history, physical examination and diagnostic testing. This provides deeper insights into understanding the origin, prevention and treatment of complex chronic diseases. Functional medicine considers multiple factors for formulating a treatment plan, which includes genetic makeup (genes), environmental inputs (diet, exercise, environmental toxicants) and mind-body elements (psychological, spiritual and social factors). Recent advances in functional medicine are expanding the clinician’s therapeutic tool box. These advances include more efficient approaches that utilize combinations of therapeutic drugs, nutritional supplements, botanical medicines, therapeutic diets and detoxification programs along with changes in lifestyle, exercise and stress-management techniques.
Conclusion Our society is continuously experiencing a sharp increase in the number of people who suffer from complex chronic diseases such as diabetes, heart disease, cancer, mental illness and autoimmune disorders. Today’s healthcare system is in trouble as it applies a limited medical management model or paradigm that is less successful for the holistic treatment of chronic health problems. If a person is suffering with chronic diseases, he or she certainly seeks a physician to secure all of the life-acting resources of modern medicine such as lifesaving technology, surgery and antibiotics. However, the immediate recourse only to drugs, surgery and other acute care treatments very often does not succeed in the fullest resolution of chronic diseases. In this context, the approach of functional medicine offers a most profound and effective way to treat patients, particularly those with chronic health issues. Clearly, implementing functional medicine in medical practice would improve patient health and help to reduce the financial pressure on the healthcare system.
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References Bland, J. (2015). Functional medicine: an operating system for integrative medicine. Integrative Medicine: A Clinician's Journal, 14(5), 18.
David, G. (2016). Functional medicine: The ultimate misnomer in the world of integrative medicine". Science Based Medicine.
Diederichs, C., Berger, K., & Bartels, D. B. (2010). The measurement of multiple chronic diseases—a systematic review on existing multimorbidity indices. Journals of Gerontology Series A: Biomedical Sciences and Medical Sciences, 66(3), 301-311.
Ehrlich, G., Callender, T., & Gaster, B. (2013). Integrative medicine at academic health centers: a survey of clinicians' educational backgrounds and practices. Family medicine, 45(5), 330-334.
Fung, F. Y., & Linn, Y. C. (2015). Developing traditional Chinese medicine in the era of evidence-based medicine: current evidences and challenges. Evidence-Based Complementary and Alternative Medicine, 2015.
Gerteis, J., Izrael, D., Deitz, D., LeRoy, L., Ricciardi, R., Miller, T., & Basu, J. (2014). Multiple chronic conditions chartbook. Rockville, MD: Agency for Healthcare Research and Quality.
Griswold, M. G., Fullman, N., Hawley, C., Arian, N., Zimsen, S. R., Tymeson, H. D., ... & Abate, K. H. (2018). Alcohol use and burden for 195 countries and territories, 1990– 2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet, 392(10152), 1015-1035.
Maizes, V., Rakel, D., & Niemiec, C. (2009). Integrative medicine and patient-centered care. Explore: The Journal of Science and Healing, 5(5), 277-289.
McPhail, S. M. (2016). Multimorbidity in chronic disease: impact on health care resources and costs. Risk management and healthcare policy, 9, 143.
Nabel, E. G., Stevens, S., & Smith, R. (2009). Combating chronic disease in developing countries. The Lancet, 373(9680), 2004-2006.
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Rao, G. H. (2015). Integrative approach to health: Challenges and opportunities. Journal of Ayurveda and integrative medicine, 6(3), 215.
Reynolds, A. (2009). Patient-centered care. Radiologic Technology, 81(2), 133-147.
Ross, C. L. (2009). Integral healthcare: the benefits and challenges of integrating complementary and alternative medicine with a conventional healthcare practice. Integrative medicine insights, 4, 13.
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Roy, R. (2010). Integrative medicine to tackle the problem of chronic diseases. Journal of Ayurveda and integrative medicine, 1(1), 18.
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Academic Commentary
Wolf Pack Theory: A Dilemma for Health Care Outcomes
Kathleen Voigt, MSN, ANP, FNP 9180 Coors Blvd NW Albuquerque, NM 87120 Tel: (505) 449-7699 Email: [email protected]
Author Note The opinions expressed in this article are those of the author alone. They do not reflect the official positions of any of the institutions that the author serves. The author has no financial conflicts of interest.
Abstract It is incumbent upon health care leadership to provide vision and direction for equitable health care access and distribution of health care resources to all. However, to achieve this it is necessary to confront those factors that undermine health care equity, especially those that seemingly are culturally subconscious. One such factor is termed Wolf Pack Theory. Within the American context, this article explores Wolf Pack Theory as a selective bias within the insurance industry and public policy, negatively impacting equitable access to health care and health care outcomes. This article describes the phenomenon of Wolf Pack Theory in an attempt to promote and identify how powerful insurance and policy groups can provide positive leadership so as to close the disparity gap for health care access for at risk populations and achieving the best quality of life for all. Keywords: health care bias, health disparities, social justice, population health
Introduction One area of increasing cultural attention in the United States is the equitable availability of health care for all those who are in need. Over the course of many decades, strong discussions have taken place about this critical area, and many approaches to health care have developed. Such approaches always develop in relationship to innumerable academic, social and cultural factors that emerge, regardless whether such factors are positive or negative. One factor that is important in these developments is that of leadership theory. Leadership theories help to identify unique styles and best practices in achieving identified outcomes based on mission statements and goals in societies, cultures and nations.
Wolf Pack Theory is one such leadership approach or paradigm. It has applications to many professional disciplines and sociocultural contexts. Some of its applications can be undermining. This article focuses on Wolf Pack Theory’s negative consequences upon group
Journal of Health and Human Experience Volume V, No. 1 59 Articles behavior and the creation of equitable policy within the health care arena. This theory impacts and undermines interactional leadership and negatively affects the achievement of needed social justice goals for reducing disparities in both health care access and population outcomes. Wolf Pack Theory in the health care setting is defined as a group banding together on the basis of implicit bias or prejudice, thereby negatively affecting specific individuals or groups through any number of actions.
Wolf Pack Theory Wolf Pack Theory is based on an innate survival instinct within the human person and human societies. Individuals band together in groups, either consciously or unconsciously, to achieve an identified outcome. It is well known that wolves live within packs for survival, and have a unique social order and structure called therian pack rankings (Tala, 2015), with the best hunting outcomes in small attack groups of three to five wolves (MacNulty, Tallian, Stahler, & Smith, 2014).
Wolves target animals that are vulnerable due to illness or weakness, the very young or elderly (International Wolf Center, 2019). There is cooperation within the pack in a successful kill that otherwise would not be achievable if done individually. The small hunting group results are termed “benefit of cooperation” and are followed by the “cost of cooperation,” which involves sharing the victory kill with the pack (Viegas, 2014).
Successes are best achieved in small, cooperative groups with the leadership avoiding risk but allowed to participate in the victorious results. The cooperative group approach in the insurance industry and health care policy reflects this phenomenon.
The Insurance Wolf Pack Insurance bias is defined as a favorable selection of enrollees by insurers resulting in disproportionate enrollment of certain groups of people. An insurance company’s main focus is business. This focus on business is a powerful influence. The business of health insurance aims to spread risks from an insured individual to the larger group of the insured customers based on profitable business decisions and algorithms with the goal of a company net profit. Health Maintenance Organizations (HMO) achieve cost savings primarily as a result of selection bias for healthier people (Hellinger, 1987) sometimes called “the healthy worker bias” (Koebnick, Langer-Gould, Gould, Chao, Iyer, Smith Chen, & Jacobsen, 2012).
Favorable selection occurs when a plan has an enrollee pool whose health care needs are less than anticipated when the premium is set. Adverse selection refers to the opposite situation, that is, when the enrollee pool requires more than the anticipated amount of health care dollars to maintain health. Shane and Trivedi (2012) report insurance bias selections according to employment status, gender, age, ethnic group, education level, income, presence of chronic conditions, and history of previous insurance coverage.
There is documented inadequate insurance coverage for individuals with lower incomes, lower employment status, and bias coverage for same sex relationships (Majerol, & Tolbert,
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2016; Gonzales, & Blew, 2014). Senator Elizabeth Warren (D-Mass) (Marans, 2018) identifies further insurance bias by restricting coverage for particular network provider groups and medication reimbursements resulting in narrowing health care access and potentiating adverse health care outcomes on the most basic levels.
The five top U.S. insurance companies are reporting historic profits with cumulative net earnings of $4.5 billion by March of 2017 (Herman, 2017), and third quarter 2017 profits ranging from $446.9 million to $50.3 billion. The insured individual is thus a customer who pays a fee for health care coverage either directly or indirectly to an insurance company. How did the insured individual transition from the customer to an optional entity for an insurance policy?
The Social Security Acts of 1935 and of 1965 demonstrate our government’s concern for the elderly, disabled, women and children, and the unemployed (Social Security, n.d.). When did the concern for at-risk populations become secondary to profits? Lastly, how did the situation of the U.S. spending more health care dollars per capita on its citizens, who die at younger ages, and live in poorer health through-out the live span (IOM, 2013) exist alongside insurance companies reporting record breaking profits?
This for-profit industry has morphed the concept of health care from a human experience of promoting best outcomes to an optional inclusion for select individuals in an insurance policy. The insurance industry Wolf Pack approach in health care seeks astounding net profits via: a) healthy worker selection, b) limiting coverage to the uninsured and low-income populations, c) excluding certain network provider groups, d) limiting medication reimbursements, and e) targeting the elderly and weak for limited policy coverage.
The Government Wolf Pack Factors influencing an individual or population’s health are called the determinants of health. These include: health and health care services, individual behaviors such as lifestyle choices or habits, social environment status, the physical environment, and genetic determinants. (Kindig, n.d.). Factors affecting health outcomes for diverse populations include: race/ethnicity, geography, gender, and socioeconomic status (Kindig, n.d.). Therefore, health care access improves health care outcomes but requires public policies and programs to distribute the available resources equally for all populations (Kindig, 2017).
Health equity for diverse populations means identifying, within a specified geographical area, respective disparities and the associated morbidity/mortality outcomes with equitable disbursement of resources to achieve the best quality of life. The intersection of a particular population’s disparities and health care access determines outcomes. These outcomes differ in an arena of nonexistent or ambiguous public policy versus interactive, strong public policy identifying needs that are matched with equitable resource distribution. A discussion of the individual affecting factors follows.
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Costs Health care is expensive in the United States (U.S.). The cost for national health care expenditures (NHE) increased by 4.3% in 2016, with a total dollar value of $3.3 trillion, representing 17.9% of the Gross Domestic Product (GDP) (CMMS, 2017). This translates to a $10,348 per capita cost in the U.S. (CMMS, 2017), which is three times the OECD expenditure per capita for health care (Peter G. Peterson Foundation, 2017). Health care costs are increasing at an anticipated rate of 5.9% related to increasing Medicare and Medicaid populations (CMMS, 2017). By 2025 the combined cost for public and private health care spending is expected to be one-fifth of the U.S. economy. Despite the high cost of health care, Americans die at a younger age and live in poorer health throughout their lives, compared to other advanced countries (IOM, 2013). Root causes for high health care costs include: low income, being uninsured with limited options for health care access, education level, living environment, and health behavior choices (IOM, 2013).
Racial/Ethnicity, Geographic, Language Health Care Bias Racial bias in public policy, whether implicit or explicit, is widespread with great potential for negative health outcomes. The End Racial Profiling Act (ERPA) bill H.R. 1498 (2017) was resubmitted for approval in the 115th Congress with bipartisan support of 79 congressional representatives. This bill was first introduced in 2001 (S.989, 2001) and every year since to prohibit racial profiling by any law enforcement agency. This bill also directs all state or government funded programs to eliminate racial profiling and any practices that support racial profiling (S. 989, 2001). In eighteen years, Congress has yet to pass this law. Almost half (41%) of nonelderly Americans are people of color and, as of 2016, 55% of the 32.3 million uninsured nonelderly are people of color (Artega, Foutz, Cornachione, & Garfield, 2016).
There are disparities in access to health care for nonelderly people of color related to cost for services (KFF, 2016). Nonelderly Hispanics (21%), American Indians/Alaskan Natives (21%), and Blacks (13%) have significantly higher rates of being uninsured compared to whites (9%) (Artiga et al., 2016). Barriers in rural health care access are: limited numbers of health care providers, geographic locations with limited Medicaid coverage, and poorer employer- provided health care coverage. There are 60.6 million Americans (21%) over the age of five who are non-English speaking (Wolz, 2014), resulting in language barriers for frontline health care delivery systems with the potential for unintentional noncompliance in costly medical regimens. Limited access to preventive care services for the nonelderly due to economics, color/ethnicity, geographic location, and language has a financial impact of $260 billion per year in loss of employment productivity (CDC, 2017).
Ageism Health Care Bias In an effort to provide health care for aging Americans, Medicare was established in 1965 by Congress (H.R. 6675). As the Baby Boomer population ages, the Medicare system expects 70 million Americans needing elderly health care by 2030 (Alliance for Aging Research, n.d.). With the problem of ageism prejudice becoming more widely known, it is well understood that elderly health care bias is present and affects this population’s ability to live happy, productive lives in their advanced years. According to the Alliance for Aging (n.d.) the following are the issues that need resolution to reverse this bias.
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…First, health care providers need additional geriatric training with emphasis in preventive care and screening for age related disease processes.
…Second, age specific disease treatment guidelines need to be adopted that promote better health outcomes for the elderly.
…Third, clinical trials need to include geriatric participants to identify safe drug dosing regimens.
…Lastly, policy makers need to approve health care legislation for low Medicare premiums and deductibles with inclusion of medication coverage as essential elderly health care benefits.
Immigrant Health Care and Solutions There are 12.1 million illegal immigrants in the United States as of 2014 (Baker, 2018) with an unsustainable taxpayer burden of $17 billion yearly in health care costs that include $4.3 billion spent yearly in emergency departments acting as safety net health care systems (Camarota, 2009). Immigrant reform legislation allowing citizenship provides health care access and reverses the deleterious effects of disparities experienced by this at-risk population. Passel and Cohen (2008) report a projected influx of U.S immigrants to increase by 67 million in 2050 with an additional 50 million immigrant U.S. born children and grandchildren. One solution to this problem is immigrant legislation allowing this population to fund its own health care. The following are additional areas of important consideration.
Technical Feasibility: There are established clinic facilities to provide immigrant health care called Federally Qualified Health Centers (FQHC) (DHSS, 2017) that are under the Medicare/Medicaid federal system. However, access to market place insurance products and options is prevented by government policy due to immigrant status and the associated tax credit restrictions for insurance premiums.
Costs/Cost Effectiveness: Between 2000 and 2011, illegal immigrants contributed $35.1 billion over the actual costs of their health care (Bayne, 2015). Immigrant reform policy utilizing these funds allows frontline provider systems to manage this population’s health care in a cost-effective manner. The absence of any immigrant public policy creates a cost prohibitive burden by the U.S. taxpayer for immigrant health care through emergency departments. Public policy motivating insurers to increase health care cost coverage from 60 to 70 cents on the dollar to 85 cents on the dollar and align with Medicare and Medicaid coverage is needed (Marans, 2018).
Value Acceptability: Reversing immigrant inequity of access to health care relieves associated social injustices, protects the health of U.S. citizens, and reduces the high cost of immigrant primary care through emergency departments (CMA, n.d.). The opportunity to access health care insurance results in lower mortality rates, improved opportunities for education and employment, and improved mental health (McConville, Hill, Ugo, & Hayes, 2015).
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As stated previously, the Government Wolf Pack approach in current health care policy results in health care access disparities related to race, ethnicity, low income, geographic location, language, immigrant status, and advanced age. Therefore, current health care policy has to confront the problems that arise from the Wolf Pack approach and develop more positive and truly humane approaches so as to achieve that which is ultimately the universally primordial goal, namely increasing and securing the health and well being of all.
In Summary….. Healthy People 2020 defines health equity as a population that achieves the highest level of health possible (ODPHP, 2017). In other words, health equity is an individual or specific population’s ability to achieve the best health possible within their environment with increased years of life associated with a high quality of life (Kindig, 2017). The unchecked disparities in health care translates into preventable health care problems (Whitehead, 2017) and exorbitant costs imposed onto the U.S. taxpayer. Many American leaders have called for needed change. Martin Luther King Jr. said it best: “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”
It is leadership’s responsibility within the insurance industry and government policy maker groups to avoid Wolf Pack approaches and decision making in health care policy and reform. Providing equitable health care will require creative and fiscally responsible legislation with mandates for equal distribution of resource dollars. Immigrant health care reform policies can provide templates for future health care issues and a vision for solutions to this problem worldwide. The infrastructures exist to achieve an inclusive health care delivery system in the U.S. What is needed is an all-inclusive legislative road map, without the bias of personal agendas and business influences of monetary gain. Ultimately, this requires the commitment of all concerned to inclusive, socially just and humane approaches that support and promote a truly healthy America.
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Camarota, S.A. (2009, September 7). Illegal immigrants and HR 3200: Estimate of potential costs to taxpayers. Center for Immigration Studies. Retrieved 5 January 2019 from https:// cis.org/Illegal-Immigrants-and-HR-3200
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Gonzales, G., Blew, L.A. (2014). National and state-specified health insurance disparities for adults in same-sex relationships. American Journal of Public Health, 104(2), (pp. e95-e104). DOI: 10.2105/AJPH.2013.301577
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Koebnick, D., Langer-Gould, A.M., Gould, M.K., Chao, C.R., Iyer, R.I., Smith, N., Chen, W., Jacobsen, S.J. (2012). Sociodemographic characteristics of members of a large, integrated health care system: Comparison with US census bureau data. Permanente Journal, 16(3). Retrieved 5 January 2019 from https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC3442759/pdf/i1552-5775-16-3-37.pdf
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MacDorman, J.F., Mathews, T.J., Mohangoo, A.D., Zeitlin, J. (2014). International comparisons of infant mortality and related factors: United States and Europe, 2010. National Vital Statistics Reports, 63(5). Retrieved 5 January 2019 from https://www.cdc.gov/nchs/data/ nvsr/nvsr63/nvsr63_05.pdf
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Exploring the Phenomenon and Perspectives of Empathy and Compassion in the Caring Professions: Part I
Patricia Hinton Walker, PhD, RN, FAAN, MCC, NBC-HWC & SEI Coaching Stepping Stones 901 Pleasant Drive Rockville, MD 20850 Email: [email protected]
Gloria Ramsey, JD, RN, FNAP, FAAN Faculty Associate and Associate Dean for Diversity, Equity and Inclusion Johns Hopkins School of Nursing 525 North Wolfe Street Baltimore, MD 21205 Tel: (410) 955-4280 Email: [email protected]
Authors Note The authors originally approached the development of empathy within the context of a previous article on design thinking in the Journal of Health and Human Experience. The authors are solely responsible for the contents of this article. The contents do not necessarily reflect the position of the organizations and communities that they serve. The authors have no financial conflicts of interest.
Abstract Empathy, one of the emerging approaches for the development of new and innovative initiatives, creates challenges for the education and training of caring professionals. This article addresses the complexity of the issues related to empathy and compassion, not only for the individual caring professional, but for those teaching and training those in the broader caring professions. By providing a deep-dive into broader definitions than the simple past statement, ”I feel your pain,” this article delves into the deep complexity of both empathy and compassion with the knowledge of their impact on individuals, families and communities in today’s society. After defining the terms empathy and compassion to ensure that the complexity of these two terms are understood, this article addresses the challenges and questions emerging in the context of a complicated and changing healthcare environment. Historical, philosophical, bioethical, neuroscience and social science perspectives are critical to understanding the complexity of empathy and compassion for all entering and/or practicing in the caring professions. Challenges and questions emerging in the context of a complicated and changing healthcare environment with an increased focus on patient/person satisfaction and engagement are also addressed. This article provides a background for a thorough discussion of the approaches to education
Journal of Health and Human Experience Volume V, No. 1 69 Articles and training of individuals who are entering the “caring professions” and for those providers/ practitioners already struggling with these two phenomena in the arena called healthcare. This thorough discussion will be explored, investigated and presented in a second follow-on article to be published in future edition of the Journal. Keywords: empathy, compassion, neuroscience of empathy, social empathy, caring, empathy impact, stress and burnout, compassion fatigue, neuroscience and mirror neurons, nursing ethics, bioethics, clinical ethics, virtue ethics, design thinking, education/training of caring professionals, self-compassion and self-care.
Introduction When exploring the phenomenon of empathy as a follow-up for the first step of Design Thinking (published in a prior issue of the Journal of Health and Human Experience by Ramsey and Hinton Walker, 2018), the authors uncovered very diverse perspectives in the literature. Further exploration of both empathy and compassion highlighted the value of these phenomena, but also uncovered a number of challenges for individuals in the caring professions. In addition to the value highlighted in the literature related to patient satisfaction and improved outcomes, there is significant concern regarding burnout, moral distress and a potential cause for some caring professionals to leave their professions. Some authors relate the growing shortage of some health and caring professionals to these challenges that arise from burnout, compassion fatigue and moral distress.
The purpose of this first of two articles is to explore the wide-ranging literature related to both empathy and compassion. Since many individuals use the two terms interchangeably it is important that these definitions be clarified. Consequently, by differentiating between the two and taking a deep-dive into the issues related to the conceptualization of these terms, this article attempts to identify the relationship of the value of empathy and compassion in many interprofessional roles in the caring professions. The emerging literature related to empathy increasingly is highlighting questions related to neuroscience processes and impact. More scientists are exploring how empathy impacts the brain and the relationship of this to stress and burnout. Included herein are historical, philosophical and bio-ethical perspectives, along with knowledge and discussions related to neuroscience and social science. Empathy within the individual and the role of mirror neurons will be explored along with increased references within the literature related to “social empathy.” To clarify, none of the content in this first article is provided for making any case against empathy and compassion, but to highlight the challenges and how these important topics need to be approached moving forward within the caring professions.
The follow-on article will build on the historical knowledge with attention to neuroscience and social science of this current article so as to identify some strategies for improving empathy and compassion in the context of patient/person care, engagement, improved satisfaction and outcomes. With increasing focus in the literature on burnout, moral distress and compassion fatigue, this article provides strategies designed to improve satisfaction for provider(s) with suggestions for improving one’s own health, wellness and well-being. This will include attention to the role of compassion in the ‘caring professions’ along with specific strategies for developing and practicing self-compassion so as to maintain a positive self-identity in professional roles involving empathy, compassion and caring. Of particular notation, in the follow-on article,
70 Volume V, No. 1 Journal of Health and Human Experience Articles challenges will be presented for the individual in the caring professions, as well as emerging strategies related to the education and training of members of the caring professions regarding empathy and compassion.
Within the context of the 50 Year Perspective of Nursing Theory Celebration at Case Western Reserve University, this article will connect selected historical contributions to this subject as a way of emphasizing the connection of empathy and compassion specific to nursing as one of the caring professions. Specific contributions by Betty Neuman, Sister Callista Roy and Jean Watson will be highlighted beyond but consistent with historical contributions related to nursing as a caring profession (Hinton Walker and Neuman, 1996).
Broad approaches to nursing practice--along with many others of those in the caring professions--is shifting to community-based care. Consequently, the multifaceted approaches to care of individuals and communities is consistent with the emerging literature from both Goleman (1997) and Segal (2011) clarifying the different approaches to empathy and compassion from that given to an individual (affective and cognitive) to that given to a community (social). Of particular importance, this article also explores engaging implications that take the individual beyond one-on-one patient care and the historical primary focus on medical care so as to consider broader community-based care, and the linking of social empathy and/or compassion. This is of particular importance for understanding the intense relationship of healthcare with social justice and sensitivity to issues related to diversity and the need for inclusion.
Historical, Philosophical and Bioethical Perspectives Introduction to Bioethics and Philosophical Perspectives A considerable debate has occurred in the bioethics and philosophy literature that grappled with the question “Can You Teach Compassion?” and “Can Empathy Be Taught?” (Garden, 2007). These questions often lead to spirited discussions and at times are not asked in the context of an academic question to seek consistency or clarity, but rather one that caring professionals value deeply and take to heart as they engage in patient care and carry out their day to day work in contemporary healthcare settings. Written from the educator perspective, this article does not engage in this discussion. Rather, a historical and bioethical perspective is provided to help ground the importance and the value of these two virtues and to suggest possibilities for how best to strengthen in the larger question of impact on the caring professions. The latter will be discussed in the Part II article to follow.
Historical and Philosophical Perspectives During the 18th century, the texts of David Hume and Adam Smith were frequently cited. Their writings included the word “sympathy” but not “empathy” (Agosta, 2011). Moving into the 21st century, during the Anglo-American Tradition, it was Hume and Smith’s work that was further explored by Michael Slote and later by Stephen Darwall. However, it was John Rawls and Thomas Nagel who took this body of work and began to explore the interrelation of empathy, sympathy, and altruism. Additionally, during the Continental Tradition (the second tradition), it was there that spirituality was introduced by Johann Herder to the phenomenological movement of Edmund Husserl, Martin Heidegger, Max Scheler and Edith Stein (Agosta, 2011).
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Philosophers and thinkers have distinguished the terms “sympathy” and “empathy.” Sympathy is frequently used to mean one person’s response to the negative effects (suffering) of another individual, thereby leading to pro-social (helping) behaviors toward another (Agosta, 2011). On the other hand, empathy typically means one person responding to positive effects and negative effects without requiring that anything be done (no pro-social behavior required) (Agosta, 2011). Agosta goes on to say that sympathy is understood to include agreement or approbation whereby empathy is often a “relatively neutral form of data gathering about the experiences and effects of others” (Agosta, 2011). Sympathy means a “…specific affective response such as compassion or pity whereby empathy once again encompasses effects in general, including negative ones such as anger, fear, or resentment” (Agosta, 2011).
The words empathy and sympathy both point to the ancient Greek roots “pathos” in the etymological context of modern English (Partridge 1966/1977). Pathos in turn means to suffer in the sense of to endure, to undergo, or to be at the effect of. A single mention in Aristotle in the original Greek of empathes occurs in Aristotle’s On Dreams in which the coward experiences intense fear upon imagining that he sees his enemy approaching. In the original Greek, the references to empathes are few and marginal, generally meaning “in a state of intense emotion,” “passionate emotion,” or “much affected by” (Agosta, 2011).
In contrast, the number of references to sympathy is hundreds of entries long and is diverse, extending from Aeschylus, Aristophanes, Aristotle, Demosthenes, and frequently breaking through to the English in Shakespeare. The meanings include the constellation of ones that we would recognize including “agreement,” “pity,” “compassion,” “transmission of affect,” and “suggestibility” (Agosta, 2011).
As we consider the English language, it was Cornell University psychologist Edward Bradford Titchner’s neologism in translating the German word “Einfuhlung” that introduced the word empathy in his lectures based on his work in the laboratory of Wilhelm Wundt (E. B. Titchener,1909) (Agosta, 2011). In German, a phrase such as “feeling one’s way into,” is used, and the thinking is that there would be an advantage by having a single word. It was described that the use of the word was a technical error when one of the foremost researchers on empathy uses the word empathy as a substitute for sympathy (Agosta, 2011). It was David Hume, Adam Smith and others that valued research on empathy, compassion and the morality of caring (Agosta, 2011). This was the British version of utilitarianism and the word “empathy” did not exist in the English language when Hume (1739) and Smith (1759) wrote about engaging the foundations of morality in sympathy (Agosta, 2011). Moreover, prior to the word empathy being introduced to the English language, sympathy captured the distinction “communicability of affect.” It thereby distinguished between a method of data gathering about the experiences (sensations, affects, emotions) of other persons and the use of this experience for good (Agosta, 2011).
It is important to note that the Continental tradition also had challenges with the use of the German language when related to the word sympathy in the British tradition. However, when reflecting upon innovation and the use of the word empathy, in the 1950s psychoanalyst Heinz Kohut’s usage is based on the philosophy of science rather than the uses of the term used by Freud who neglected the word but not the underlying distinction (Agosto, 2011). “Kohut’s use of empathy is a method of data gathering oriented towards a listening base immersion in the affective, experiential, and mental life of the other person” (Agosta, 2011). When making
72 Volume V, No. 1 Journal of Health and Human Experience Articles a value neutral inquiry, the psychoanalyst’s use of empathy as a method of data-gathering is of great interest to ethicists. “Issues around coherence and integrity of character and the self as a bulwark against unethical behavior which includes such things as rampant cheating, drug abuse, gambling, moral malaise and other individual, social, and communal ills” (Agosta, 2011).
Anglo-American Tradition Notable leaders in the Anglo-American tradition were David Hume, Adam Smith, John Rawls, Thomas Nagel and Michael Slote. Philosopher David Hume’s contributions related to differentiating meanings of sympathy with four distinct meanings of this important concept are highlighted here. The first two meanings of sympathy, Hume argues, functions in the “communicability of affect” and “emotional contagion.” His third and fourth meaning(s) of sympathy includes the “power of suggestion” and “an element of benevolence.” (Agosta, 2011). One of the ways that sympathy is viewed today clearly is related to Hume’s initial definition of “communicability of affect.” Later, in his 1741 essay Of the Delicacy of Tastes and Passion ([email protected], 2015), Hume makes note of all the advantages of human interactions of sympathy and especially highlights the importance of friendship, intimacy and interpersonal warmth to his concept of “delicacy.” Interestingly, by the time of the Inquiry (1751), sympathy had been pushed down behind compassion; and “compassion takes on the content of qualities useful to mankind as benevolence” (Agosta, 2011).
Bioethical Perspectives The ethics of care is often interpreted as a form of virtue ethics (Beauchamp, 2013). It is important in healthcare, medical care and nursing care (Beauchamp, 2013). The ethics of care looks at intimate personal relationships such as sympathy, compassion, fidelity and love (Beauchamp, 2013). When one considers caring, it refers to the feelings of caring for others, actual taking care of others or the emotional commitment to and willingness to act on behalf of persons with whom one may have a significant relationship. Beauchamp further argues that caring is expressed in the actions of “caregiving,” “taking care of ” and “due care” (Beauchamp, 2013). It is important to note that the ethics of care also reminds physicians and nurses of their responsibilities--not merely of what should they do but also how they perform those actions, the motives and feelings that underlie them and whether the actions promote or indeed thwart positive relationships (Beauchamp, 2013).
Continuing to consider the ethics of care from a philosophical perspective, it originated initially in feminist writings. Some of the early literature in this area emphasized how women were seen as displaying an ethics of care, compared to men who predominantly were seen to exhibit an ethics of rights and obligations. In the 1980s, psychologist Carol Gilligan argued that women speak in a different voice that is often not heard when analyzing traditional ethical theory. Gilligan, through her empirical research, sought to explore the “voice of care” and interviewed women and girls. She argued that “empathetic association with others is not based on the primacy and universality of individual rights, but rather on… a very strong sense of being responsible” (Gilligan, 1982).
Gilligan’s work was important in that two views of moral thinking were identified: an ethic of care and an ethic of rights and justice (Beauchamp, 2013). Important to note that Gilligan did not claim that these two views of thinking were strictly linked to gender in that all women
Journal of Health and Human Experience Volume V, No. 1 73 Articles or all men spoke in the same moral voice. She argued, however, that men tend to embrace an ethic of rights and justice using quasi-legal terminology, impartial principles and dispassionate balancing and conflict resolution. On the other hand, “women tend to affirm an ethic of care that centers on responsiveness in an interconnected network of needs, care and even prevention of harm” (Beauchamp, 2013).
Divergent Perspectives on the Ethics of Care There are largely two perspectives that are often used to criticize traditional ethical theories and deemphasize the virtues of caring (Beauchamp, 2013). They include: 1) challenging impartiality; and 2) relationship and emotion. When considering challenging impartiality, some argue that theories regarding norms of obligations are overemphasized and there is detached fairness. Moral detachment may also demonstrate a lack of caring responsiveness when people interact as equals in a public context of impersonal justice and institutional constraints (Beauchamp, 2013).
“In the absence of public and institutional constraints, partiality towards others is morally permissible and is the expected form of interaction” (Beauchamp, 2013). Some would even argue it is an element of human condition that cannot be destroyed (Beauchamp, 2013). It is said that without having the ability to exhibit partiality, our most important relationships could be harmed or severed (Beauchamp, 2013). “Proponents of care ethics do not recommend a general abandonment of principles as long as principles allow room for discretionary and contextual judgment” (Beauchamp, 2013). Yet, defenders of the ethics of care find principles “irrelevant, unproductive, ineffectual or unduly constrictive in the moral life” (Beauchamp, 2013). On the other hand, one could argue that the principles of care, compassion and kindness help others to respond with caring, compassionate and kind ways (Beauchamp, 2013). Moral experience suggests that individuals do indeed rely on emotions, the capacity for sympathy and the sense of friendship and sensitivity to determine appropriate moral responses (Beauchamp, 2013).
“The ethics of care places a special emphasis on mutual interdependence and emotional responsiveness” (Beauchamp, 2013). Feelings for and being immersed in the other person are important and necessary aspects of a moral relationship. The rights-based or obligation-based account may omit meaningful forms of empathy because the focus is on protecting persons from wrongdoing by others (Beauchamp, 2013). Notwithstanding, having a certain amount of emotional attitude is relevant and necessary when a person lacks both. Caring has an important cognitive dimension and requires a range of moral skills in that it involves “insight into an understanding of another’s circumstances, their needs, and feelings” (Beauchamp, 2013).
Empathy: Definitions and Value For most individuals within the caring professions, empathy is and has been a necessary component of successful “caring” for patients, person, clients, families and communities. It is clearly an important element in all health and other caring professionals and even in pastoral care. According to Pastor E. Marume (2019), empathy and listening are critical keys that are
74 Volume V, No. 1 Journal of Health and Human Experience Articles interwoven and must be present to assist the pastor to be allowed to enter and help from within. These are like the backbone of professional counseling for spiritual counseling and therapy. Michael Jacobs (1988; pg. 9) indicated that “The ability to empathize, or to identify with how others might be feeling . . . and means the ability to put oneself in someone’s shoes, to get into their skin, to experience what they might be experiencing.” It is a mirroring of feelings of someone’s suffering. The relationship of empathy to mirror neurons will be discussed in detail in the section on neuroscience and social science that follows.
Depending on the particular type of caring professionals, there are a different number of definitions and particular names and numbers of components used to describe empathy in the literature. One early example is the identification of two components to empathy: emotional and cognitive states (Vinton and Harrington, 1994). Another approach involves three components: 1) affective sharing perceptions and action coupling; 2) self-other awareness; and 3) mental flexibility and self-emotion regulation.
Affective sharing perceptions and action coupling is the involuntary first step that most individuals would recognize with mirror neurons enabling us to see the other person’s actions, gestures, facial expressions and other behaviors and truly hear the words, tone of voice and content of their story. Then during component 2, during self-other awareness, it is important that the caring professional be able to disengage and begin to make cognitive inferences of others (Decety & Lamm, 2006). When this component is not used well, this is where burnout and deep experience of the burden of the other person can occur. Finally, during component 3, mental flexibility and self-emotion regulation allow the caring professional to avoid, inhibit and/or modulate the intensity or the “feeling state” of empathy. Decety & Lamm, 2006).
Finally, it is important to highlight herein the identification of a newer concept of “social empathy.” According to E.A. Segal, “Social empathy is the ability to understand people by perceiving or experiencing their life situations and as a result gain insight into structural inequalities and disparities.” Segal highlights that this type of empathy builds on individual empathy and will impact social and economic justice and wellbeing. This is an important contribution but not unusual since many different disciplines are analyzing and defining components of empathy with attempts to measure it, to engage meaningful comparisons and to explore how to cultivate or teach it. Ultimately, there is no question about the value of empathy for individuals and groups within all of the caring professions, including those not often considered (Segal, 2011).
Social empathy is the ability to understand people by perceiving or experiencing their life situations and, as a result, gain insight into structural inequalities and disparities. Increased understanding of social and economic inequalities can lead to actions that effect positive change, social and economic justice and general wellbeing (Segal, 2006, 2007a, 2007b). It is built upon individual empathy. Generally, empathy includes “the act of perceiving, understanding, experiencing, and responding to the emotional state and ideas of another person” (Barker, 2003, p. 141). For decades, empathy was analyzed and defined from the perspective of social and cognitive psychologists (Gerdes, Segal, & Lietz, 2010). In recent years, empathy has received a great deal of attention within the field of social-cognitive neuroscience (Decety & Jackson, 2004, 2006; Singer & Lamm, 2009).
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Compassion: Definitions and Value Compassion is an important virtue for healthcare professionals. Other importantly related virtues include discernment, trustworthiness, integrity and conscientiousness. They are all important parts of the development and expressions of caring, a fundamental nursing value. Compassion is a prelude to caring. Beauchamp further states that compassion predisposes sympathy, has affinities with mercy and is expressed in beneficence to alleviate suffering (Beauchamp, 2013).
Compassion is an essential component of good quality healthcare. However, despite its value and importance in healthcare, the construct of compassion is complex and multifaceted. Researchers grapple with how best to define the term and how to identify the specific factors, situations, patient groups and even healthcare professionals that define and relate best to the term compassion. In a physician--patient study where compassion was investigated through recordings, researchers identified three components to help define the term. These include: recognition, emotional resonance and movement towards addressing suffering. Little wonder then that healthcare professionals conceptualize compassion as “acting with warmth and empathy, providing individualized patient care, and acting in a way that one would expect others to act towards them” (Bickford, 2019).
Nursing, on the other hand, clearly identifies that the need for compassion, and respect for the inherent dignity, worth and unique attributes of every person is a core foundation for any and all healthcare professionals, including all those who call themselves nurses. The ANA Code of Ethics for Nurses in 2001 and again in 2015 stipulated the need for compassion in Provision 1, “…the nurse practices with compassion and respect for the inherent dignity, worth, and unique attributes of every person” ANA Code (2015). This is a fundamental value and commitment of the nurse and was a term introduced to the Code of Ethics Revision process during the 1996- 2001 revisions, Provision 1, to establish the 2001 Code of Ethics (Ramsey, 2001). The term compassion was also included in the updated 2015 Code of Ethics to further stipulate that nurses have a duty and obligation to provide compassionate care to “patients, whether that word refers to an individual, family, group, community or population” (ANA Code 2015).
Compassion requires empathy and being able to put oneself in the individual’s place with the ability to communicate an understanding and appreciation of what concerns them. Compassion also involves patience and treating an individual with dignity and respect. Nurses need not feel hurried, impatient or overwhelmed with a myriad of tasks that would negatively impact the compassionate care they desire to provide. When feeling anxious, overwhelmed and simply stressed, negative emotions could create a barrier to providing high quality compassionate care. The many demands on nurses in clinical practice today, coupled with a lack of time, have negatively impacted clinicians’ emotional state. Many times, this has resulted in providers experiencing suffering due to a reduction of compassion and quality of care (Bickford, 2019).
One study found that negative emotions and situational stress among medical and nursing students impeded compassion (Bickford, 2019). Empathy is a risk factor among helping professionals in that the more the professional is empathically attuned while working in stressful conditions, the greater the vulnerability to experience poor professional quality of life (Laverdiere, 2019). A recent study explored individual and social empathy in the context of
76 Volume V, No. 1 Journal of Health and Human Experience Articles responding to social issues such as racial tensions, gender issues, immigration, health disparities and socioeconomic issues of this current era. Social empathy is defined as “…the ability to understand people by perceiving or experiencing their life situations and as a result gain insight into structural inequalities and disparities” (Segal, 2018).
It is reported that medical students are often overwhelmed and even distressed by first time encounters and experiences with emotionally charged clinical matters addressing the social determinants of health. These experiences can often be devastating, especially when the clinician does not have an opportunity to mediate this distress, and reflect within the context of the institutional culture. Such experiences may stand as a barrier for healthy, reflective and empathic engagement with self and others. This raises important questions related to empathy associated with vulnerable groups and social justice issues. It is important to help students in all of the caring professions to address and manage their emotions in an effort to stop empathy decline and reduce burnout (Wellbery, 2019).
Neuroscience and Social Science Perspectives During the past decade, researchers in the social-cognitive neuroscience field have conducted research using neural brain imaging to help other scientists and practitioners understand that empathy is mediated in the brain. Decety and Jackson applied their knowledge on empathy and delineated four key components: 1) the capacity for an automatic or unconscious affective response to others that may include sharing others’ emotional states; 2) a cognitive capacity to take the perspective of another; 3) the ability to regulate one’s emotions; and, 4) a level of self/other awareness that allows some temporary identification between self and others (2004).
Further exploration by Decety & Moriguchi resulted in the conclusion that Empathy is a multidimensional construct that includes both bottom-up and top-down components. The bottom-up part of empathy is the automatic or unconscious affected process . . . The top-down part of empathy is the conscious cognitive process that enables us not only to explain and predict our own behaviors, but the behaviors of others, as well (2007).
With the knowledge of a relationship between neuroplasticity and the development of empathy now physiologically observable through brain imaging, this creates an opening for a new discussion of mirror neurons. To summarize briefly for the purposes herein, “the mirror neuron system (MNS) is a network of brain cells that fire during our own motor behaviors, but more important, also fire when we hear other people speak” (Gazzola, Aziz-Zadeh & Keysers, 2006). Additionally, according to Enticott, Johnson, Herring, Hoy & Fitzgerald, (2008), “… the mirror neurons are involved in watching gestures and facial expressions.” Examples like those from neuroscience mentioned above, “are presently making the definition of empathy richer, more precise, and more actionable” (Gerdes, K.E. Lietz, C.A., & Segal, E.A., 2001). It is also important to note, that men and women are not the same--with females having a stronger activation system causing them to be wired for more emotional resonance while males are
Journal of Health and Human Experience Volume V, No. 1 77 Articles wired to remain more detached or cognitively driven in empathic response (Schulte-Ruther, Markowitsch, Fink & Piefke, 2008).
Another aspect of this discussion is important to note. It has been shown that when mirror neurons fire and are in distress or experiencing the distress of others, individuals may experience adrenalin and cortisol impact, which may contribute to burnout and stress. Scientists now know from a neuroscience perspective that cortisol once released can last up to 72 hours. This may be part of the cause of burnout when caring professionals take home at the end of the day/shift the empathic response of “I feel your pain.” Also, great exploration is needed for the impact of social empathy and moral distress on the ethical and moral values of caring professionals when identifying with individuals and families where care is needed but cannot, for “systems reasons,” be provided. This has specific importance when the needs are those in diverse and underserved populations. Strategies for addressing this and other responses to foster improved health and wellbeing of the caring professionals will be discussed in the future article already mentioned.
Empathy & Compassion: Challenges and Questions to Consider The emerging literature related to empathy increasingly is highlighting questions related to neuroscience processes and the impact of social empathy related to concerns regarding access to care for many economically challenged communities. It is cited in some of the literature that stress, burnout and complicated ethical decision-making also contribute to moral distress that results in some groups leaving the professions. This is reflected in a recent paper on moral distress developed with interprofessional leaders in the National Academies of Medicine Global Innovations in Health Professions Education (Coffey, et.al. 2017).
There are a number of articles and other resources which highlight the challenges related to empathy, specifically burnout and moral distress. For example, the stress that occurs when providers continue to experience the impact of empathy because of the impact of cortisol, even after their interaction with patients/clients, also can take a significant toll contributing to burnout. It is important to be aware of the challenges that such opinions, even those more controversial and negative, pose to the understanding and advancement of empathy and compassion for patient care.
One example of an author so concerned about this is Yale researcher Paul Bloom. In his book, Against Empathy, he posits that empathy is one of the leading motivators of inequality and immorality in society and that it muddles judgment, in addition to creating distress. (Bloom, P. 2016). In this controversial book, he makes the case against empathy and advocates instead for a more distanced and rationale compassion. Other authors discuss challenges related to providers from many professions who experience moral distress and compassion fatigue due to situations such as conflicting goals between and among decision-makers in healthcare, patients/persons and family members. Additionally, increasing challenges occur with staff shortages due to some caring professionals choosing to leave the profession, providers overwhelmed due to lack of time to take care of patients, and even an increase in reports of suicides in some of these groups. This even includes veterinarians where compassion fatigue and stress has caused an increase in suicides (Best, 2016). The intensity of moral distress depends on personal values and life experiences. Examples include unexpected discharge roadblocks,
78 Volume V, No. 1 Journal of Health and Human Experience Articles conflicting goals between providers and family and inadequate time because of administrative duties or sick calls. These types of ethical conflicts and constraints are ubiquitous for hospital caregivers, including case managers. Ultimately, moral distress generates adverse outcomes for patients who depend on professional advocacy.
Clinician burnout can be tied directly to massive adoption and updates of technology infrastructure under the 2009 Health Information Technology for Economic and Clinical Health Act (HITECH). Electronic health records (EHR) provide many benefits to patients and clinicians, but in their current state often create an unnecessary documentation burden that is a significant contributor to clinician burnout and reported moral distress (McBride, Tietze, Robchaux, Stokes & Weber, 2018). EHRs and additional clerical burden are resulting in stressful work environments. In addition to clerical burden, there are challenges with the usability of EHRs and the lack of support for effective and efficient collaboration and communication across the interprofessional team. This is also a factor in burnout and increased stress of clinicians. Physicians are also experiencing burnout and moral distress related to the use of EHRs (Baxter, 2018).
There are results in some studies of ethical situations often associated with feelings of moral distress. In addition to EHRs and challenges with technology, there are significant challenges related to staffing, preparation of healthcare providers and other caring professionals specific for changing demographics, more community-based versus hospital-based medical care and growing emphasis on patient/person engagement which adds another layer of need for compassion and empathy beyond face-to-face care.
Empathy and Compassion in Education and Training for the Caring Professions: The Bridge to Part II Based on the diverse literature and studies that have been done related to empathy and compassion, it is clear that educators and trainers of individuals and groups of caring professionals are challenged. It is also clear that both empathy and compassion are key to patient/person satisfaction and meaning and purpose for providers. Empathy and compassion are a necessary part of delivering a wide variety of services by caring professionals.
In Part II of this article to be published in a future edition of the Journal, strategies will be proposed to identify some of the changes that need to be highlighted in the preparation of caring and health professionals, as well as strategies to enhance the health and wellbeing of the professionals through self-compassion. Indeed, it is time for a good, hard and needed assessment of some of the challenges for individuals, families and communities as they interact with a variety of health and caring professionals. Polarity Management (Johnson, 1998) will be highlighted with ‘both/and’ approaches such as embracing the challenges of technology which can destroy empathy, yet exploring creative use of technology such as the immersive use of virtual reality which can create and enhance empathy as well. (Manney, 2015).
Moving forward, it will be important to embrace an old saying “It Takes A Village” since many of the approaches will go beyond the individual to the organization, to examination of the implementation and adoption of technology, and to exploring support systems needed to foster retention and health/wellbeing of our caring professionals.
Journal of Health and Human Experience Volume V, No. 1 79 Articles
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The Experience of Sabbath: Exploring the Significance of Music in Healing from the Interdisciplinary Perspective of Theology, Medicine and the Arts
Joshua D. Arthur, MD, MTS Assistant Professor of Pediatrics and Health Care Ethics Saint Louis University School of Medicine 1465 South Grand Boulevard St. Louis, MO 63104-1095 Tel: (314) 268-2700 ext 3197 Email: [email protected]
Editor’s Note This article serves as a powerful follow-on to the article in our Fall 2018 edition that explored music therapy and its healing power. As indicated below, this article was developed from the author’s original thesis for his graduate degree in theological studies. It is therefore written from a Christian theological perspective. In addition, this article explores the healing power of music from a unique interdisciplinary perspective that brings together healthcare/medicine, music, and theology. Our readers are encouraged to translate the perspectives of this article into their own philosophical and spiritual traditions of life.
Author Note This article is adapted and revised from the author’s Master of Theological Studies thesis at Duke Divinity School. The contents do not necessarily reflect the position of Saint Louis University or Duke Divinity School. The author would like to thank Dr. Raymond Barfield for his mentorship in the drafting of the original manuscript. Where indicated in the text, refer to the endnotes section of the article for expanded information. The author has no financial conflicts of interest.
Abstract There is great interest in the contributions that music can offer to health and healing, yet a physiologic mechanism for such a connection remains unclear. After first describing modern attempts to quantify the effect of music on illness and healing, this article then looks at alternate conceptions of the place of music in human experience, exploring historic theological and philosophical understandings on the connection between music and healing. Beginning with Pythagoras and the Greek philosophers and advancing through ancient Jewish and Christian teachings, this article explores the ultimate conclusion that music has powerful effects on bodies and communities because a primary function of music is to connect humans to God, creation, and one another. Christian theology suggests that the power that music has on disordered bodies and lives derives from its ability to align humans to the Jewish and Christian
Journal of Health and Human Experience Volume V, No. 1 85 Articles understanding of Sabbath, the rest that God always intended for all of creation. By experiencing music, humans can enter Sabbath rest. By entering Sabbath rest, suffering lives and communities can experience healing. Keywords: Music, healing, medicine, spirituality, Sabbath, rest, suffering
Introduction There is great interest in developing scientific connections between healing and music. From best-selling books to medical journals, researchers have been exploring the strength of such links for decades, engaging a diverse collection of medical disciplines, from music’s effects on premature infants and their parents (Loewy, Stewart, Dassler, Telsey, & Homel, 2013) to its effect on the cognitive functioning of elderly patients suffering from dementia (van der Steen et al., 2017). A search of the National Institutes of Health medical publication database during November 2018 elicited 23,250 medical articles related to music. The robust scholarly activity appears to arise from an awareness that the aesthetic, emotive realm may join more deeply with the vessels and sinews of the body than the scientific method has thus far been able to demonstrate.
This article argues that there is a profound insight to that intuition, but that nonetheless the junction between melodies and mitochondria may remain elusive. Music’s ability to effect healing in disordered minds and bodies may not be first grounded in measurable physiologic mechanisms (although quantifiable processes may be a downstream effect). Rather, historic Christian theology would offer an alternative conception of music, suggesting that music functions to shape lives and communities primarily because it embodies a particular order, namely a cosmic logic that finds its origin in creation and its culmination in Sabbath rest, a pivotal concept in Jewish and Christian theology.
First examining the historical link between the philosophical conception of music and what is noted as the divine order of creation, this article then proceeds to explore the Jewish concept of Sabbath as the pinnacle of that cosmic order, namely a representation of the creativity, joy, and rest that is revealed in music and is to be realized throughout all of creation. A new perspective on rest is discussed as it is revealed in the Christian scriptural descriptions of Jesus’ provocative acts of healing on the Sabbath day, practices that introduce a new political order for individuals and communities. Furthermore, in addition to Jesus’ transformation of rest in the present, the invitation from the writer of the book of Hebrews for Christians to enter into eternal rest through the resurrection of Jesus Christ indicates that Sabbath was not only the design of creation, but the intent of all of history.
The pursuit of creativity, joy, and rest is a search that has been valued across times, religions, and cultures. This article explores historic Christian teachings, suggesting that those who desire the healing and freedom of Sabbath should align themselves with the rests and rhythms of music, allowing their lives to be governed by moments of gratuitous beauty that point to the goodness of God’s universe. Such theology posits that by revealing the beauty and creativity of the Creator, music enables those in need of wholeness to enter Sabbath rest. Music allows bodies and minds in turmoil to hear, see, and even feel the richness of the Triune God (that is, the Christian understanding of God as the Trinity: Father, Son and Holy Spirit) filling their time and space.
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Moreover, it states that within communities oriented toward Sabbath rest, sharing music together is a critical means for God’s sovereignty to break into the lives of those in need of healing. Pic 1
Photo by Mark Kamin Munich University Choir and Orchestra 2006 https://commons.wikimedia.org/wiki/File:FHM-Choir-Orchestra-mk2006-04.jpg
Current Findings in Music and Medicine In his book, Healing at the Speed of Sound, best-selling author Don Campbell chronicles the long-established idea of a relationship between sound and well-being. For example, he discusses Orpheus, the mythical Greek musician (the “Father of Song”) and prophet who also taught the art of medicine. Likewise, he alludes to Confucius, who believed that music was innate in the universe and could restore harmony in the mind and spirit when properly executed (Levman, 2000). In the ensuing years, shamans, healers, and religious leaders sought to purge and “retune” the body using musical practices such as chanting, singing, and drumming. A century and a half ago, Florence Nightingale famously used sound to distract patients from pain, speed them to recovery, and calm their stress and mental illness. Today, over 3,800 music therapists practice in the United States, using music in an attempt to soothe anxiety and hasten healing. In the spirit of the scientific tradition, hundreds of studies have been performed attempting to describe these connections quantitatively. Unfortunately, the search for clinically relevant relationships between music and medicine has thus far been equivocal.
Much of the research has concentrated on the effects of music on acute and chronic pain, particularly during painful therapeutic interventions such as chest tube removal in adults or IV placement in children. However, others have evaluated broader outcomes, such as improvements in functionality among hospice patients (Koenig et al., 2013). In other cases, researchers have
assessed potential negative effects, as listening to music in undesired styles can lead to anxiety
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Articles and depression (Campbell & Doman, 2011). While the majority of research has been clinical, there has also been inquiry into the physiology behind music’s perceived effects. Campbell notes that when subjects listen to upbeat music in a preferred style, they experience expansion of their blood vessels with consequent increased blood flow, improved breathing, increased endorphins, decreased stress, and an increased general sense of well-being. Other studies have investigated the response of the autonomous nervous system (the system that governs involuntary physiologic responses to stress or relaxation), showing activation of stress hormones and the immune system when listening to music, changes that are amplified when performing before an audience (presumably because doing so is anxiety-producing) (Kreutz, Bongard, Rohrmann, Hodapp, & Grebe, 2004).
Unfortunately, the clinical implications of these studies are unclear. Most people might accept that a music listener could experience feelings of relaxation when listening to preferred music without requiring empiric data. Similarly, they might grant that the body undergoes physiologic changes when one is relaxed (or stressed as in the case of musical performance). In large part, these studies simply quantify responses that one might consider intuitive; one suspects that researchers might elicit similar results if a different non-musical relaxation activity were chosen as an intervention. Nonetheless, they do introduce the possibility that music can modify physiologic functioning. If the body responds in predictable ways to music, it is at least worth wondering whether those responses could be a meaningful part of a larger project of healing and flourishing.
Clinical research has not been limited to receptive responses to music. Both anecdotal reports and small clinical investigations have explored the outcomes of active musical interventions, which involve the creation of music by a patient, usually with a music therapist. Goals of patient participation include activation of emotions and creativity, engaging with the symbolism of music, communicating with others, distraction from discomfort, reinforcement of desired behaviors and relaxation. Aiming to ultimately improve patients’ sense of well-being and life functioning, such techniques have produced promising results in muscle-related pain syndromes and migraine headaches (Koenig et al., 2013). Moreover, they have resulted in heart- warming anecdotes such as the professional CD produced at Vanderbilt University featuring songs written by hospitalized children and recorded by professional musicians such as Vince Gill and Faith Hill (Wicker, 2010).
Despite the success of these endeavors, scientific inquiry has proven unable to move beyond observation (correlating music with a physiologic or psychological change) to causation (how and why does music have this effect?). In describing her work using musical improvisation for treatment of pain, Susanne Metzner describes the difficulty in spanning the epistemological gap between a person’s perception of music and its measurable effect on their pain. Because of the unique effects that music might have on any particular individual, she concedes that it seems “impossible to make general statements that go beyond an individual meaning or experience of music” (Metzner, 2012). The function of music is intimately tied up with the subjective experience of music; unfortunately for researchers, an experience is a difficult thing to quantify.
As a result of the difficulties that Metzner describes, rigorous attempts to quantitatively describe the relationship between music and healing have predictably been unconvincing. The general trend in meta-analyses by investigators in the Cochrane Collaboration has been demonstration of weak, but statistically significant, effectiveness of music therapy for anxiety
88 Volume V, No. 1 Journal of Health and Human Experience Articles in patients with medical conditions such as coronary heart disease (Bradt, Dileo, & Shim, 2013) or upcoming surgery. For those patients, as well as patients on mechanical ventilation (Bradt, Dileo, & Grocke, 2010), music has seemed to improve some features of the body’s stress response such as lowering of heart rate, respiratory rate and anxiety. There have been positive but inconsistent findings of improved quality of life in patients with schizophrenia (Geretsegger et al., 2017) and those receiving end of life care (Bradt & Dileo, 2014). In a meta-analysis of studies using music for pain relief, there appears to be a reduction in pain intensity levels and opioid requirements; however, because the difference was so small, the clinical significance was unclear. Another systematic review of 42 randomized controlled trials of music interventions in perioperative settings showed improvement in anxiety and pain in approximately half the studies (Nilsson, 2008). Perhaps the most clinically relevant research has been data about music’s disordered counterpart, noise, in the hospital. In contrast with the potential relaxing effects of music, several studies have shown that the sounds of monitors, life-support equipment and the general commotion of the hospital appear to promote at least annoyance and perhaps even anxiety and aggression in hospitalized patients and their family members (Short, Ahern, Holdgate, Morris, & Sidhu, 2010).
The tenuous correlation between music and medical outcomes closely mirrors another recent attempt to link a seemingly subjective, deeply individual human practice to medical healing: the effort to show that religion (particularly intercessory prayer) is an efficient intervention towards improving illness. In the case of religion, there are also numerous studies evaluating the evidence for a link with health outcomes. And like music, there appears to be some sort of significant positive association between religion and health (Shuman & Meador, 2003)(Shuman & Meador, 2003). Nonetheless, the implications of the research are likewise vague. What exactly explains the effects that religion has on healing? Do feelings of solidarity, hope or acceptance that occur in conjunction with religious practices act as confounding variables? Are there supernatural forces at work (if that is the case, why are the observed effects so small)? Are there any practical implications of this data? According to the investigators for the Cochrane Review article, “Intercessory prayer for the alleviation of ill health,” the answer to the last question is “no.” Their meta-analysis did not demonstrate evidence to recommend for or against intercessory prayer; moreover, they found the data so unpersuasive that they stated: “We are not convinced that further trials of this intervention should be undertaken and would prefer to see any resources available for such a trial used to investigate other questions in health care” (Roberts, Ahmed, & Davison, 2009). In other words, if one thought that the object of prayer was to facilitate healing, this review would suggest that prayer has no point. Or perhaps it simply shows that if prayer does have an effect, like music, that effect seems to be hidden from the methods of scientific investigation.
In their book Heal Thyself, Joel Schuman and Keith Meador suggest that the reason that clinical research seems to demonstrate that only vague medical efficacy for religious interventions (with regards to healing) is that the religious practices that are measured only resemble the actual practices of religious communities in superficial ways. Any particular religious identity cannot be boiled down to a single quantifiable variable such as church attendance, scripture reading, or prayer frequency without doing violence to all of the other factors that render that practice meaningful. Thus, it is difficult for the methods of scientific inquiry to stratify outcomes into categories that are narrow enough to measure but simultaneously broad enough to encompass the variety of expectations that people have for religious practice. Whereas Christianity may draw one person into a monastery, the same
Journal of Health and Human Experience Volume V, No. 1 89 Articles doctrines may draw another to a mega-church. While one person might pray for their family member to be healed, another might pray not for healing, but for patience (Romans 12:21, New Revised Standard Version). Danish philosopher Soren Kierkegaard famously wrote in Christian Discourses, “A man prayed, and at first he thought that prayer was talking. But he became more and more quiet until in the end he realized that prayer is listening” (Kierkegaard & Lowrie, 1939). Thus, one might pray so that God would hear them, another might pray so that they hear God. The point is that it is difficult to tell whether studies on prayer or religion in general actually say anything profound about prayer or religion themselves. Perhaps in the midst of the clinical studies, the profound effects of prayer are taking place everywhere but beneath the microscope. Perhaps prayer does not change the likelihood of hospital readmission or post- operative complications, but rather transforms the patient and the community that prays for them in ways far more crucial to a healthy life.
The premise here is that according to Christian belief, music offers great power for those who need healing. For those with mental illness, physical illness or broken relationships, music is not simply an anxiolytic; rather, it acts as a template, offering a particular type of holy ordering to a body buffeted by internal and external disorder. However, like religious practices, music may or may not make a measurable difference in the speed of wound healing or the outcomes of a heart attack; nonetheless, it may help humans tossed about by the chaos of a broken body to reassemble their lives – lives constituted in significant part, but not wholly, by bodies. Like prayer, the deeply personal elements of musical experience may render its effects unquantifiable, yet that does not mean that they are invalid. Perhaps the effect of music may involve a different engagement with music than can be easily quantified in a dose-response relationship. Rather than a “dose” of music thirty minutes or one hour per day (as has been studied), the person changed by music might not listen to music at all on any particular day. Instead, one might imagine that music could contribute to a person’s health because it puts a song in a listener’s heart, a melody that persists consciously or subconsciously from the moment they wake until they return to sleep.
Judging by the breadth of research into the interaction between music and the body, this is not an uncommon intuition. Human rituals and tradition likewise support the idea of a certain intrinsic power to music. What would a wedding be like without music? Can one imagine a religious service without hymns or songs of worship? There are songs for birthday parties, camps, school, sporting events, military ceremonies and graduations. All of these refrains communicate sentiments for which words are insufficient. In these settings, music is used to direct listeners’ attention to the way that embodied practices, whether the loving commitment of a wedding or the enthusiastic solidarity of a sporting event, are shadows of a divinely ordered reality.
The Musical Order of Reality For the Judeo-Christian, the idea of created reality having a musical order would not be foreign. In the book of Psalms, the trees of the forest (Psalm 96:12), the hills (Psalm 98:8) and the valleys (Psalm 65:13) sing together for joy. In the Book of Job, even the stars sing together with the joyful shouts of the heavenly beings (Job 38:7). In Isaiah, it is the mountains and hills that burst into song; not to be outdone, the trees of the field join by clapping their hands (Isaiah 55:12). The Judeo-Christian Scriptures construe music not only as a language for humans and angels, but a theme for everything God has created. It is this melody of God’s love that compels humans to turn away from their restless world towards the joy and healing of God’s ongoing creative work.
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Such an idea has continued resonance in the current millennium. In the 17th century, Henry Vaughn wrote of “the great chime and symphony of nature,” an orchestra that brings a universe into being in J.R.R. Tolkien’s introduction to The Silmarillion (Tolkien, 1977). Tolkien’s contemporary, C.S. Lewis, wrote in The Magician’s Nephew of a majestic lion, Aslan, whose wild and tantalizing song brought the world of Narnia into existence (Lewis & Baynes, 2004). In his book The Spirit of the Liturgy, Pope Benedict XVI drew on the traditions of Saint Augustine and the Greek philosophers to state not only that “the music made by man (sic) must. . . be taken from the inner music and order of the universe,” but that such order has “a deeper foundation: the mind of the Creator” (Razinger, 2000). Pope Benedict’s line of thinking has a long and distinguished heritage. To illustrate the history of the idea of a relationship between music and a cosmic order, this article will draw on Jeremy Begbie’s detailed lineage in his book Resounding Truth. The central notion, writes Begbie, “is that musical sound, especially musical harmony, coincides with and gives expression to cosmic order, which in turn reflects and in some manner gives access to the Creator” (Begbie, 2007, p. 79).
The story begins in the sixth century BCE with Pythagoras, who was reportedly enamored of the intermittent dissonance and consonance of the notes that rang out from a blacksmith’s anvil. Through careful investigation, he discovered that the most pleasing combinations of pitches resulted from different hammers whose relative weights could be related by simple mathematical ratios (1:2, 2:3 and so on). With further analysis, he found that the same logic applied to the length of a string. Two pieces of the same string, with different lengths but the same tension, would resonate at octaves if one string was twice as long as the other. If the difference in length was 3:2, the pitch interval would be a fifth. Pythagoras already believed in a universe governed by a physics of mathematical ratios; music, he realized, might make those ratios available to human comprehension. From this intuition came his concept of the “music of the spheres” (commonly referenced until the 15th century and beyond), the idea that the planets and stars emit different pitches that vary on the basis of their size, filling the universe with majestic but inaudible music. Pic 2
Photo by Bibi Saint-Pol A Music Lesson, Phintias 510 BCE
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Several centuries later, Plato synthesized Pythagorean and other themes into the dialogue Timaeus, destined to have tremendous influence on Christian medieval musical thought, broadening the mathematical conception of the physical universe to include the soul and body. For Plato, “music gives us not only a model of harmonious balance, unity, and integrity, it actually implants cosmic harmony into the soul of humans” (Begbie, 2007, p. 80)(Levman, 2000). Not only did music imitate the m(Begbie, 2007)ovement of the heavenly bodies, but Plato also believed that it reflected the universe’s innate moral order (Levman, 2000). Through the ensuing centuries, Plato’s view of music was taken for granted by virtually all ancient philosophers as well as the vast amount of subsequent Christian thought.
Five hundred years later, the philosopher Plotinus developed Plato’s thought further, developing a hierarchy of being with the infinite cause (“the One”) at the highest level. For him, music was “the earthly representation of the music there is in. . . the Ideal Realm” (Begbie, 2007, p. 83). Placing less emphasis on mathematical dimensions of music, Plotinus was more interested in the ways that music might allow one to know, and even ascend to, the beauty of the immaterial, ideal realm.
The Platonic strands were introduced into Christian thought with St. Augustine’s late fourth century reflections on music, which included clear allusions to the ancient philosophers’ “hidden affinity” between music and the soul. Like those thinkers, Augustine demonstrated a deep attraction to the numerical proportions that bound the universe together, namely ratios that he believed were embedded in music. For him, music was not valuable so much as an aesthetic, but in as much as it enabled listeners to apprehend the mathematics of the universe, rendering its order accessible to the ear. He was suspicious of being consumed by the sensuous pleasure of the sounds of music for its own sake. He was more intrigued by the cosmic patterns to which they were directed. At the heart, De Musica, his meditation on the nature of music, was Augustine’s conviction that God actually is music in the sense that God is the fountain and ground of numerical beauty. God, as the absolute being from which all lesser goods descend, is the “supreme measure, number, relation, harmony, unity, and equality, and all manifestations and embodiments of Pic 3 music in the world are from him” (Begbie, 2007, pp. 84-85). Augustine’s cosmos is a blend of pagan philosophy and Christian themes. For Augustine, there is an order to the universe, however it finds its basis not in mathematical ratios, but in the love of the Trinity. Music is thus a temporal expression of the eternal music belonging to God and as such can assist the fallen
soul in its return to God. Photo by Centurion Igreja de Sao Francisco Manuscript, Evora, Portugal
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Through the 9th to 11th centuries, musicians continued to explore the aesthetic implications of mathematical philosophies of music. Gregorian chants were arranged according to Pythagorean acoustic patterns. By the end of the 11th century, musicians were beginning to create elaborate music including multiple melodically independent lines with the parts arranged in Pythagorean intervals such as the fourth, the fifth, and the octave. The prominence of Pythagorean intervals in today’s music may find its origin in this era.
Augustine’s conception of music remained dominant in Christian thought even through the turmoil of the Protestant Reformation in 16th century Europe. Martin Luther, with his emphasis on the preached Word of God, saw music as a complementary audible portrayal of God’s truth. He was particularly moved by the way that music embodied the order that he found crucial in the Genesis account of creation in the Hebrew Scriptures, seeing music as a “world of sound in which every note and rhythm finds its proper place in the whole. . . not only a sign of the possibility of order, but . . . an actual achievement of that order, a sure indication of the stability of God in a shifting and unstable world” (Begbie, 2007, p. 99). Crucial to Luther’s theology, however, was that these principles were not to be worked out in personal devotional practices alone. Rather, he believed that congregational singing was fundamental for fixing the Word of God in people’s hearts. He promoted corporate worship in the vernacular as well as continuing to affirm the choral mass and incorporating popular musical motifs. Music, he believed, was a critical aspect of the proclamation of the Christian Gospel. By its grounding in the cosmic order, it had the power to hold the forces of sin at bay and was a means through which Christians might share in the God-given order of the world. For Luther, the cosmos was “fundamentally musical through and through” (Begbie, 2007, p. 99).
The Prioritization of Feeling However, the understanding of music as an expression of a mathematical reality came under pressure with the rapid development of the natural sciences that occurred in the 16th and 17th centuries. As astronomers such as Copernicus, Galileo, and Kepler were creating new conceptions of the solar system that questioned the Pythagorean and Aristotelian views of a spherical, musical universe of perfect numbers, new kinds of complex polyphonic music also seemed to require deviation from the Pythagorean norms. Galileo announced that natural consonance and dissonance did not actually exist. Harmonies were simply an arbitrary selection of notes from an infinite number of musical intervals from which musicians could choose as they preferred. Similarly, in 1529, theorist Lodovico Fogliano proposed that sound is a quality that affects and exists only in the ear; thus the listener, not the mathematician, is the final arbiter of consonance and dissonance. In the centuries that followed, music began to move from origins in the cosmos to being anchored in the realm of human subjectivity (Begbie, 2007).
With the blooming of Haydn and Mozart as well as Beethoven’s earliest symphonies, music came to be understood to the Romantics as a way of articulating the individual feelings, whether religious or otherwise, that language was insufficient to express. During that period, E. T. A. Hoffman wrote of instrumental music a means of “striving for. . . the divine life that resides within." In 1822, Ludwig Tieck wrote, “flowing out of every tone is a tragic and divine enthusiasm which redeems every listener from the limitations of earthly existence” (Begbie, 2007, pp. 150-151). In a sense, the idea of music giving access to an ineffable realm was a return to the cosmic harmony of the ancient philosophers. The difference was that the Romantics
Journal of Health and Human Experience Volume V, No. 1 93 Articles turned the ancient tradition inward. Rather than music orienting the listener externally towards Augustine’s highest good, one was directed internally toward one’s own self-consciousness.
Measuring Music In concert with the theological developments of Romanticism in the understanding of music, tectonic shifts were occurring in the understanding of the body as a subject of scientific inquiry. The creation of academic medicine, with researchers, teachers, and students, necessitated the development of a language to describe disease. Like music, sickness would no longer be described solely in terms of metaphysical schemes and speculative philosophical purposes best understood by the theologian. The body with its particular telos became for medicine an incidental container for a specific disease. A new medicine was born that aimed to describe pathology in objective terms based on quantifiable physical changes that allowed it to be measured, communicated, and ultimately categorized (Bishop, 2011).
Extending its epistemological fingers throughout the academy, the desire to categorize and measure came to also dominate the interpretation of music. With the flourishing of the sciences in the 17th to 18th centuries, theorists developed the idea of music as a “language of the emotions” in order to link its effects and functions to the canons of physics and physiology. The language of emotions allowed the professors of the new medicine to describe objective emotional effects that resulted from music in ways that could ultimately be amenable to scientific investigation (i.e. modern studies of the effects of emotion on heart rate or pulse) and to rid the study of music from vague metaphysical claims that could not be proven (Begbie, 2007).
As the “meaning” of music, like that of religion, was being dismissed as purely subjective, those who desired credibility for the significance of music felt obligated to subject it to the rigors of science. This is largely because a hallmark of modernity is to consider the scientific method as the only way that things can be truly “known.” As a result, religious devotional behaviors became reduced to techniques for achievement of immediate ends such as physical and mental well- being; likewise, the goal of music became production of specific, objective results external to the music itself. Music no longer was understood to have its own inherent value, but became useful Pic 4 in the ways that it was able to shape the emotional and inner self-consciousness of the listener. As religious believers accepted the premises of modernity, they abandoned the narrative of music in social terms, where communities that shared music together were directed toward a corporate solidarity centered on worship (Shuman & Meador, 2003). Today, this tradition persists with the continued interiorization
of music and rise of Photo by Naamon Horn individualism that https://commons.wikimedia.org/wiki/File:EVC_Concert_(Danali Music Festival 2012 7652367248).jpg
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Articles threatens the communal concept of “church” or “faith community.” In light of these modern currents of thought, musicologist Julian Johnson writes, If it now strikes us as amusing that music was once linked to astronomy or natural science, that is only because we fail to recognize ourselves [in humankind’s attempts to define an understanding of the world] and [recognize] the historical development of our own attempts to understand the world. If we no longer take music seriously as a way of defining our relation to the external world, perhaps we have become not more sophisticated but simply more self-absorbed (Johnson, 2002).
Agreeing with Johnson, Begbie suggests that listeners should question the modern privileging of the inner life and emotional state, instead rethinking music in social terms and asking questions about how it will help human communities flourish together (2007).
Music as Allegory In contrast to today’s primacy of self-reflection, the historical narrative of Christian theology construes music in a more expansive sense, grounding it first in a God-given order. Springing from the Divine imagination, this rendering imbues music with the ability to embody meanings that exceed human grasp and perception, metaphors that cannot be reduced to spoken word without losing at least some of their force (Begbie, 1991, 2007). As such, music provides multilayered metaphors that reveal the Creator of the universe, as well as a means for humans to live more fully in the world that God has made. The acoustic space of music offers a world of revelation where multiple melodies can be perceived at the same time, where one vibrating string can bring another to life. Like the community of the Trinity in the Christian Tradition, three simultaneous melodies can unfold one compelling narrative, revealing unexpected ways that tensions can be resolved and seemingly independent stories can form one intelligible plot. For example, perhaps it is possible that perfect justice and perfect mercy can live together in one God. Perhaps the accounts of God’s sovereign work of salvation and the human participation in grace are not opposed, but in harmony. Thus, the harmonies and tensions of music can be a powerful parable for God’s work in humanity.
Moreover, not only is music a parable for God’s creative work in the present, but for Christian believers it is also an image of a future kingdom that they believe will be fully realized upon Christ’s return to Earth. In its allusion to the anthems sung by heavenly beings in Christ’s eternal kingdom (Revelation 4:1-5:14), music is a source of present hope. For example, Begbie draws attention to the harmonies of South Africa that were sung by the oppressed during years of apartheid. In those songs, he suggests that the music provided “a taste of authentic freedom, when in virtually every other sense they were not free.” Through music, they were “experiencing a kind of concord that can embody the kind of freedom-in-relation to others - even our enemies - that God has made possible” (Begbie, 2007, p. 290). Such hope is dangerous to the status quo, because it allows the oppressed to taste the sweetness of God’s future in the present, being reminded that before God they are not captives but free. Such a perspective has powerful meaning for all people regardless of religious alignment or faith commitment.
In a technical section of Resounding Truth, Begbie shows how music at its structural level also acts as a parable. Music, he demonstrates, is not arranged in a straight line, but as a series of equilibriums, tensions, and resolutions (ETR’s). In standard Western music, songs typically
Journal of Health and Human Experience Volume V, No. 1 95 Articles begin with a melody based on their home key (a note that provides a musical center for the song), then move away from that key, usually returning to the original key by the beginning of the next line or phrase. In such a case, equilibrium occurs at the beginning of the line. Tension arises as the melodic and chordal structures move away from the key of the song. Then resolution occurs as the music moves back toward the original key at the beginning of the next line. However, the ETR structure does not just describe the individual line, but characterizes the movement of the music at multiple levels. For example, four lines, each containing its own ETR, may compose the verse of a song. That verse may deviate from a main musical theme (a certain recognizable melody, for example) then return to it, creating an ETR built from four smaller ETRs. And within a song, a softer verse may create tension leading into a louder verse or a chorus (a common device in contemporary music), followed by a return to the original volume or energy level – an even higher-level ETR. At a concert, on a recorded album or in a symphony, one song may move towards a tension that is resolved with the next song or movement. In other words, overlapping patterns of equilibrium, tension, and resolution in music are responsible for the movement and rhythm that draw the listeners into the life of a song.
Such structure can function as an allegory for the patterns of the Scriptures. While perhaps the overarching ETR of the Judeo-Christian Scriptures is the move from creation, to fall (the human descent into sin), then to redemption, for the Christian believer there is within this ETR the lower-level ETR of Christ’s life, death, and resurrection. Then within the scenes from the life of Jesus of Nazareth, there are ETRs of healing stories (for example, Mark 2:1-12: E – Jesus teaching, T – scribes accuse Jesus of blasphemy, R – healing the paralytic validates his authority to forgive, then Jesus resumes teaching), miracles (Matthew 14:13-23: E – Jesus withdraws by himself, T – a crowd of 5,000 follows him but has no food, R – he miraculously feeds the people, then withdraws by himself ), and parables (Begbie, 2007). Above all of these ETRs exists the highest arc of history, the ETR that transcends even the salvation of humanity. It is the order towards which music is directed: E – the self-existence of the eternal God whom Christians experience as Trinity, T - God’s creative work in time and R - Sabbath rest.
Sabbath Rest Drawing on the ordered musical universe of Augustine and the ancient philosophers, the argument of this article is that music’s fundamental function is to redirect humans from the disorder and chaos of a fallen world to Sabbath time, the ordered time of the Creator God. According to the Judeo-Scriptures, that time originated “in the beginning;” from the dawn of the universe, the artistry of creation marched joyfully along a divine schedule. The sequence of days finally culminated in the Sabbath, a time where disorder finds order, where the ill find healing, where captives find freedom and where the weary find rest.
The major themes (in italics) of the Judeo-Scriptures are all associated with Sabbath. Sabbath is the day that concludes creation. It is a day, according to the Ten Commandments, where the exodus from Egypt is commemorated (Deuteronomy 5:12-15). It was a way that the Jews were able to celebrate their uniqueness as a people, having a special covenant relationship with the God who rested (Sturcke, 2005); the land that the Israelites would possess would also have Sabbath rest (Leviticus 25:1-8). And, as later found in the Christian Scriptures, ultimately the Messiah would enable Israel to experience the eternal rest that they that they could not experience in Canaan (Hebrews 4). While the first mention of God’s rest occurs in the account of creation, these later expansions demonstrate that the seventh day was no mere cessation of
96 Volume V, No. 1 Journal of Health and Human Experience Articles activity, but a way of life, a means of sharing in the divine order of creation. In order to examine the Sabbath, the pinnacle of creation, this article will first discuss creation itself.
The Music of Creation According to the book of Genesis, the universe does not exist, as the ancient Babylonians might have it, as the result of a war between gods (Enns, 2005). It does not exist, as the modern atheist might suggest, as one universe among an infinite number of universes subject to the whims of probabilistic anarchy. Rather, as Eastern Orthodox philosopher David Bentley Hart suggests, “God’s gracious action in creation belongs from the first to that delight, pleasure, and regard that the Trinity enjoys from eternity, as an outward and unnecessary expression of that love; and thus creation must be received before all else as gift and as beauty” (Hart, 2003, p. 249). In the Book of Job, God describes the morning star singing and the sons of God shouting for joy as God laid the foundations of the earth (Job 38:4-7). In Proverbs, wisdom remembers her creation before the beginning of the earth, where she rejoiced before the Lord and delighted in the human race (Proverbs 8:22-31). In Revelation, twenty-four elders bow before the throne of God, saying “for you created all things, and by your will they existed and were created” (Revelation 4:11). The elders proclaim that God created the universe for God’s own delight; the creation of the world was artistry for the sake of artistry (Hart, 2003), with marks of God’s nature scattered throughout the universe.
From the Christian perspective of God being Trinity where three different persons are possessed with perfect peace and unity, Hart describes the divine life as infinite music. He describes creation as a derivative refrain, a music “whose intervals, transitions and phrases are embraced within God’s eternal, triune polyphony” (Hart, 2003, p. 274). To the Triune God, creation sings in unified voice. 1 Chronicles 17 describes all the earth singing to the Lord: the heavens are glad, the earth rejoices; because the Lord reigns, the sea roars, thePic fields 5 rejoice and the trees of the wood sing out (1 Chronicles 17:23-33). In worship, not one voice but many cry out in a single song. According to the 4th century bishop, Gregory of Nyssa, all of…
…creation is hymn to the power of the Almighty: The order of the universe is a kind of musical harmony, richly and multifariously toned, guided by an inward rhythm and accord, pervaded by an essential ‘symphony’; the melody and cadence of the cosmic elements in their intermingling sing of God’s glory… and in the sympathy of all things one with the other, music in its truest and most perfect form is bodied forth (Hart, 2003, p. 275).
The process of creation was the composition of a song; the theme of that hymn is God’s glory.
For Hart, all themes of creation depart from the first chords mysteriously unfolded in the dance of the Trinity, rendering variations upon the motif of God’s eternal love and returning the unique melodies to Photo by Michael Maggs
God. These refrains are open to immeasurable ranges Three Quarter Size Cello 2008 https://commons.wikimedia.org/wiki/File:Cello_study.jpg
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Articles of consonance and dissonance, unpredictable modulations that restore and restate the theme of love. The promise of Christian faith is that eventually the ETRs of history will resolve. The discord of sin will be exorcised. The dissonance of a fallen world will be resolved by innumerable tonal reconciliations into an accomplished harmony, the song of creation (Hart, 2003). The Christian eschatological1 hope “promises only more and greater harmony, whose developments, embellishments, and movement never end and never return to a state more original than music” (Begbie, 1991).
Thus, Christians believe that music finds its point of reference in the order of creation because creation is the embodiment of a particular divine overture. Creation was an act within time giving rise to a new space filled with the strains of the Trinitarian theme. Creation did not simply fill the space of existence. Rather it continuously creates new space to fill with new melodies. The extravagant love of the Trinity is always creating, the cosmos constantly astonishing and surprising through its interactions of randomness and regularity, being and becoming, taking chaos and subjecting it to order.
Pic 6
Photo by Dan Mihai Pitea Maia Morgenstern sings in the old Cetate Synagogue, Timisoara, Romania https://commons.wikimedia.org/wiki/File:Maia_Morgenstern_la_Sinagoga_din_Cetate_(Timi șoara).jpg Sabbath: Experiencing Joy in God’s Rest Unfolding the manner in which humans might participate in holy rest, the Pentateuch (the first five books of the Hebrew Scriptures, also known as the Jewish “Torah”) provides several commentaries on creation. In complementary fashion, two parallel accounts of creation in the book of Genesis and two parallel versions of the Ten Commandments in Exodus and Deuteronomy introduce the delight, rest and freedom offered to humankind in Sabbath, anchoring later Christian anthems of Triune creation to the particular traditions, events and communities of ancient Israel.
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The first Genesis account is not fixed to a particular location, but finds its point of reference in time, occurring “in the beginning.” At that time, the universe was but a dark and formless void, a chaos given order by the word of God. However, in the first day of creation, reality was not divided into space but into light and darkness, properties that inhabit space but do not consume space themselves. The light was given the name day (yowm). The process of creation was further divided into cycles of morning and evening, repeating the succession of the first day five more times to complete the creation of the heavens and the earth. Yet, “on the seventh day God finished the work that he had done” (Genesis 2:2). God’s continued work on the seventh day suggests that the universe was not truly complete until God created the Sabbath. For six days God crafted a creation that was “very good.” Yet, creation was not finished with the creation of humankind on the sixth day, but with celebration of shabbat, God’s rest, on the Sabbath day. If God’s “good” work was the tension of creation, then the seventh day was the resolution.2
However, in their remarks on Genesis, rather than rendering the rest of the seventh day as shabbat, Rabbi Abraham Heschel notes that the ancient rabbis turned to a different word, menuha, which indicates more than the inactive sense of rest (withdrawal from toil). Instead, menuha suggests that on the Sabbath day, God created something real and positive that completed the universe, that is, “tranquility, serenity, peace and repose” (Heschel, 1951, p. 23). The word menuha is used to describe the eternal afterlife where Job longed to rest from his weariness and escape the trouble of the wicked. In Psalm 23, menuha describes the stillness of the waters to which the psalmist is led by the Lord. Drawing on Heschel’s concept in his book, Living the Sabbath, Norman Wirzba describes menuha as sharing in God’s experience of delight in the “very good” (Genesis 1:31) creation, “a rare occasion when we are given the opportunity to see God celebrate” (Wirzba, 2006, p. 161). The experience of delight permeates the Sabbath. By expressing their delight, believers show their joy and great pleasure in the gifts of God. Sabbath rest is the goal toward which all living should move: “not merely an interlude within life, but rather its animating heart, suffusing every moment with the potential for joy and peace. . . Life’s fullness or happiness cannot be achieved in the absence of divine delight” (Wirzba, 2006, pp. 133-134).
Yet there is still more to Sabbath than delighting in God’s creation. The connection between Sabbath rest and the theme of "remembering" God's wonders is found in Deuteronomy 5:12-15, where the Sabbath rest is grounded not in the work of creation but in the liberation accomplished by God in the exodus: "You shall remember that you were a slave in the land of Egypt and the Lord your God brought you out from there with a mighty hand and outstretched arm; therefore the Lord your God commanded you to keep the Sabbath day" (Deuteronomy 5:15). This formulation complements the creation theme of the Sabbath commandment in Exodus 20:11. Taken together, the two reveal the meaning of "the Lord's Day" within a single theological vision that fuses creation and salvation (John Paul II, 1998). Creation demonstrates a trajectory from chaos and captivity to menuha. For Christians, the Sabbath is the celebration of the Creation itself, and also the freedom made possible in Christ. Hence, in the Sabbath experience all members of the Judeo-Christian Tradition are able to discover the deep roots of joy that hold us all firm even in the dark night of suffering.
God’s hallowing of the Sabbath represents an intention for menuha to take precedence over all of the days of creation. For that reason, Heschel writes:
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All our life should be a pilgrimage to the seventh day; the thought and appreciation of what this day may bring to us should be ever present in our minds. For the Sabbath is the counterpoint of living; the melody sustained throughout all agitations and vicissitudes which menace our conscience; our awareness of God’s presence in the world. . . What we are depends on what the Sabbath is to us. The law of the Sabbath day is in the life of the spirit what the law of gravitation is in nature (Heschel, 1951, p. 89).
The call of the Decalogue (the Ten Commandments) is to “remember” the Sabbath, to remember the freedom and joy of the grand and fundamental work of creation. For all, Sabbath is not an empty span of time, but a reality full of God’s spirit. To live in God’s time means that all of life can be characterized by gratefulness and joy.
Sabbath: God’s Holy Time The Christian approach to the Sabbath as the climax of creation is grounded first in Judaic faith. In his classic book, The Sabbath, Heschel characterizes Judaism as a religion of time, with the apex of its religious practices being the celebration of God’s character as revealed in Sabbath.
He begins by contrasting time with the primary object of humankind’s endless pursuit, the world of space. Civilization pivots on the conquest of objects in space and labors endlessly in order to possess them. However, the human power of manipulation ends abruptly at the borderline of time. Humans cannot possess or master time. As a result they “suffer from a deeply rooted dread of time and stand aghast when compelled to look into its face” (Heschel, 1951, p. 5). As one seeks to add hours or days to their life, the more they realize that they cannot conquer time through gods of medicine and wealth that can be confined to space. Space is not the ultimate reality; it is continually moving through time without realizing it, from the beginning to the end of days. Time is the continual process of creation; the things of space are the results. Heschel’s argument is that humans need Sabbath because as the culmination of creation, Sabbath alone (rather than space) can give meaning to our time.
Heschel argues that Judaism has a unique relationship with space and time. The holiness of space is normal in other ancient religions, as evidenced by their worship of the things of nature. However, Heschel suggests the Judaism, as understood in the Pentateuch, “is a religion of time aiming at the sanctification of time” (Heschel, 1951, p. 8). In the Ten Commandments, there are no sacred places. Moreover, there is only one positive command: to maintain the sanctity of the seventh day. When God blessed the seventh day and made it holy, the word qadosh (“holy” or “sanctified”) was used for the first time in history, referring not to a mountain or altar, but to God’s creation of holy time. The sanctity of humanity came second;3 the holiness of space, the tabernacle, was last (Exodus 40:34-35).
In Sabbath, Jews and Christians believe that the cosmos bears an imprint of God’s nature and the core meaning of reality (John Paul II, 1998; Wirzba, 2006). Heschel writes: “Creation is the language of God, time is His song and the things of space the consonants in the song. To sanctify time is to sing the vowels in unison with Him” (Heschel, 1951, p. 101). Following Heschel’s analogy, the weekly Sabbath represents the musical rests between the verses, places of refuge embedded in the cycles of months, years and epochs that make up God’s time. And beyond Heschel’s metaphor, the Christian Scriptures declare that the final rest at the end of days is the Sabbath rest of Christ, the resolution of the great ETR, the new creation, the final
100 Volume V, No. 1 Journal of Health and Human Experience Articles reconciliation of all dissonance and disorder. For both Christians and Jews, celebrating Sabbath is to share in the work and rest of a holy, creative God.
Sabbath: Liberation and Salvation For Christians, the Sabbath finds its ultimate fulfillment in Christ’s resurrection. Sabbath was remembered by Israel in the celebration of a day, a day that existed to remember the “palace in time” (Heschel, 1951, p. 15) created for God’s people by God. In Christ, the observance moves to a sense of fulfillment, Christ’s body as the ultimate eternal temple, a permanent place of rest for the people of God.
This evolution was foreshadowed by the celebration of Jubilee in the book of Leviticus. According to God’s command to Moses, it was not only people who should observe the Sabbath, but the land as well. “Six years you shall sow your field… but in the seventh year there shall be a sabbath of complete rest for the land, a sabbath for the Lord.” Moreover, the celebration of Sabbath was to be extended to all of creation, “you, your male and female slaves, your hired and your bound laborers who live with you; for your livestock also and for the wild animals and your land” (Leviticus 25:3-7). The succeeding verses in Leviticus describe the Sabbath of Sabbaths; the seventh seven year Sabbath cycle ends with a 50th year called the year of Jubilee. In that year the land would not be farmed, property would return to its historical family ownership, debts would be paid and laborers and their children were to be liberated. Therefore, even at the beginning of Israel’s covenant with God, Sabbath was not understood to be simply a chronological day. Rather, it was a type of freedom and rest that was commemorated by a day. The celebration could be remembered weekly, but could also be observed over an entire year and result in a complete restructuring of the economic fundamentals of Israelite society.
In the Christian Scriptures, specifically in Luke 4:18-19, when Jesus alluded to the year of Jubilee, proclaiming the release of captives and the fulfillment of the year of the Lord’s favor, (Yoder, 1993) he was declaring that the eternal reality of the Sabbath was becoming fully realized in the present. The Sabbath was not a day or a year. For the Christian, it is a shadow of an ultimate fulfillment that Christ would bring.
Jesus’ proclamation of Jubilee in the Gospel of Luke was drawn from the prophetic texts of Isaiah, which were written in the wake of the final destruction of Israel’s temple and land, yet permeated with the notion that God’s creative work was not yet complete. A few verses before the section that Jesus quotes, the writer of Isaiah states that “your sun shall no more go down, or your moon withdraw itself; for the Lord will be your everlasting light” (Isaiah 60:20). In the day of Jubilee, creation will be reordered. No longer will the formless void be divided into light and dark or day and night, rather, time and space will enter a new era, ordered beneath the everlasting light of the Lord, the eternal day of Sabbath.
For the Christian believer, these verses present the fulfillment of the Sabbath in Christ as part of God’s intentions for life. Christ’s ministry begins with this proclamation of the Jubilee on the Sabbath and it ends with his body being taken down from the cross as the nightfall of Sabbath approached (Sturcke, 2005). Sabbath, which had ordered the land, labor and time of the Israelites, had found its authentic direction and purpose in Christ, the inner meaning of all of history (Wirzba, 2006). The Heidelberg Catechism, a 16th century confession of the Reformed Christian church, describes the transformation as follows: “What does God require
Journal of Health and Human Experience Volume V, No. 1 101 Articles of the [Sabbath] commandment? . . . that all the days of my life I rest from my evil works, let the Lord work in me by his Holy Spirit, and thus begin in this life the eternal Sabbath.” ("Heidelberg Catechism," 2011) The ancient theologian Origin writes that the perfect Christian, “is always in the Lord’s Day” (John Paul II, 1998).
Christians believe that the Sabbath day spills over to transform every one of their days. Just as the parables of the widow’s mites (Luke 21:1-4) and the rich young ruler (Luke 18:18-23) demonstrate that the new practice of tithing is not merely to give one tenth of one’s possessions but rather to observe a Jubilee redistribution of all they own (Yoder, 1993). For the members of the Christian community, the Sabbath is not just one seventh of a Christian’s time; instead, the Sabbath comes to define all the time that one has.
A Day of Healing Given their choice of episodes to include in their accounts, the reinterpretation of the Sabbath as a day for healing appears to have been an important priority for the writers of the Gospels (the first four books of the Christian Scriptures) and thus the early church. With the exception of disciples’ controversial choice to pick heads of grain on the Sabbath (Mark 2:23- 28), all conflicts with various leaders over the Sabbath in the Gospels involved Christ healing people: a man with a withered hand (Mark 3:1-6), a crippled woman (Luke 13:10-17), a man with dropsy (Luke 14:1-6), a blind man (John 9:1-38), an invalid (John 5:1-18), a man with an unclean spirit (Mark 1:21-28) and Simon’s mother-in-law (Mark 1:29-31).
Jesus did not only seek to redefine the Sabbath, but he also transformed the idea of healing. The healing of Christ was not to be merely the restoring of a dysfunctional body, but it was to be a reordering of the human rebellion against God. In the healing of a paralytic man lowered through roof by his friends, Jesus gave priority not to the healing of the body but to the forgiveness of sins: “Which is easier, to say to the paralytic, ‘Your sins are forgiven,’ or to say, ‘Stand up and take your mat and walk’? But so that you may know that the Son of Man has authority on earth to forgive sins’—he said to the paralytic— ‘I say to you, stand up, take your mat and go to your home’” (Mark 2:9-11). The healing of the body was merely a sign of the greater healing Christ was bringing into the world. Jesus was transforming Sabbath from ritual to reality. In Christ’s kingdom, there would be salvation for physical and spiritual bodies both.
The Sabbath as “Today” By claiming that Jesus enables entrance to Sabbath rest through his blood (that is, his sacrificial death that atones for human sins; Hebrews 10:19-20), the book of Hebrews reveals that Jesus did not come to embody Sabbath simply by his entrance into the created universe. Rather, Christ entered the definitive Sabbath rest with his resurrection. When Christ cried out, “it is finished” (John 19:30), he was declaring that his work was done. Creation was complete, opening up the possibility for the people of God to enter into God’s eternal Sabbath through the cross of Christ (John Paul II, 1998; Wirzba, 2006). In the resurrection of Christ, the mediator of creation, a new creation had begun. Disorder had been transformed. A world with a bleak destiny had come to live under the promise of a glorious future (Begbie, 1991), an assurance sealed by God’s invitation to Sabbath rest. The day to enter rest is no longer the seventh day but, according to Hebrews 4:7, it is “today.”
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For the Christian, what does it look like for the Sabbath to invade every day of the week? There is certainly still an important role for observing the Sabbath with a weekly day (the “Lord’s Day”) of celebration, rest, reconciliation and worship (Sunday for most Christians, Saturday for Jews). As the practice of Eucharist serves on a regular basis as a sign of Christ’s body and blood that were broken in his death, likewise the Lord’s Day is an indication for Christians that their lives are now governed by the wholeness of Sabbath rest. As the space of the bread and wine are transformed in the Eucharist (Thomas & Bauerschmidt, 2005), Monday through Sunday are changed by the Sabbath into time saturated with opportunities for the glorification of God. Christ’s work of reconciliation on the cross makes possible new relationships of freedom for the self and others. Time is opened to Christ and given new direction, “so that our relationships and indeed our whole life may become more profoundly human” (John Paul II, 1998). “Today” is the day that Christians can celebrate the freedom of all of creation from oppressive labor (according to Genesis 3:17-19, labor was not inherently oppressive until it was corrupted by sin) and the eschatological hope of an eternal rest.
The Sabbath commandment in Deuteronomy reminds Christians of the emancipatory thrust of the Sabbath. Christ came to accomplish a new "exodus," to restore freedom to the oppressed. He performed healings on the Sabbath, not to violate the Lord's Day, but to reveal its full meaning: "The sabbath was made for humankind, not humankind for the sabbath" (Mark 2:27). Healing on the Sabbath allowed those who were blind or paralyzed to re-enter the life of Israel. With these healings, a new politics became possible – a way of being with and caring for those with alienating illness, returning them to the rhythms of life together (Shuman & Meador, 2003), reorienting and reordering the life of society.
Against the legalistic interpretation of some of his contemporaries, Jesus restored the liberating character of Sabbath observance. “The Passover of Christ has in fact liberated man (sic) from a slavery more radical than any weighing upon an oppressed people — the slavery of sin, which alienates man (sic) from God, and alienates man (sic) from himself and from others, constantly sowing within history the seeds of evil and violence”(John Paul II, 1998). The year of Jubilee instructs Christians that the freedom of the Sabbath is opposed to wealth accumulation that comes at the expense of the poor. In contrast to the slavery of Egypt, the rest of one person should not be at the expense of another’s exhaustion or toil, whether stranger, animal or land (Exodus 23:10-11; Wirzba, 2006). Whether enslaved or free, the Sabbath cessation from labor is a reminder that humans are not sustained by the rhythm of work, rather humankind and the cosmos depend upon God. Sabbath gives Christians, and in fact for all those of good faith, an opportunity to mend tattered lives; to rest, rather than to grasp clumsily at the fragments of time slipping through their fingers.
Work, for the believer, is then to line up with God’s work. Their labor is to be good, to share in the delight of God, to bring honor to God, to promote the good of others, to be a means to contentment and to make the world more beautiful and meaningful. The rest for the land reminds them that God will provide even without our efforts; God has not created the earth for eternal toil. Even the soil itself will flourish when allowed to rest (Wirzba, 2006). Sabbath tells believers that they are no longer tyrannized by space, they do not need to possess more, to abuse the land, to strain their weary bodies beyond their capabilities (Brueggemann, 2014). People of faith can have freedom. Time can be infused with the freedom of God because God has made the Sabbath holy and a delight; the experience of Sabbath enables those who were enslaved by illness, by sadness, by loss or by poverty to be freed.
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Unlike the first six days of creation, the seventh day is unique in that it does not have a closing formula, that is, there is no evening and morning on the seventh day. Thus, in a sense, the seventh day is a day without end, a day that looks towards the last day, the day Augustine describes as “the peace of quietness, the peace of the Sabbath, a peace with no evening” (Wirzba, 2006, p. 50). After six days of struggling to master space, in celebrating Sabbath, the believer draws from the well of eternal life, to the beginning of an awareness of what eternity means (John Paul II, 1998). Sabbath is not only rest, it is a holy celebration of rest, an aligning our time with God’s time, our rest with God’s rest. Augustine famously wrote in the first chapter of his Confessions: “For thou hast made us for Thyself and our hearts are restless till they rest in Thee” (Augustine, Sheed, & Foley, 2006, p. 3). In aligning with God, all people of faith are brought into harmony with the holiness of God, “a participation in the Spirit that unites what is below and what is above” (Heschel, 1951, p. 32).
Sabbath Music If the freedom of Sabbath is the destination of all human striving, people of faith believe that music provides the waypoints on the journey. There is a deep resonance between the sound of Bach and Mozart’s ever increasing levels of complexity and beauty and the celebration of Sabbath, the perpetual remembrance Pic 7 of God’s gracious work of salvation and new creation. Those who experience music are drawn towards a deeper alignment with God’s order of mathematical harmony and aesthetic beauty in creation. Those who are captive to disordered lives of sickness, weariness, oppressive labor or financial duress are directed to God’s purpose in creation, freedom, and delight. Those who desire healing are thus directed to the healer.
Like Sabbath, music does not reside in space, but in time. It is not to be possessed and exploited, but experienced and enjoyed. Music is at its foundation relational, linking notes to Castelazo Tomas Photo by Blind Accordion Player, Mexico notes, joining musicians and listeners https://commons.wikimedia.org/wiki/File:Blind_accordion_player.jpg into community and directing creatures to enjoyment of their Creator. From the one perspective of Christian faith believing that God is a perfect society constituted by the love of the Divine persons, Christians are called to live bracketed by the relational life of the Trinity. Music draws the listener to the order of the universe, to the pursuit of Sabbath rest. In creation, God has made time in the Triune time for humanity. Likewise, humans as creatures make time for others, living in pursuit of a divinely oriented telos (purpose) within a web of dense moral relationships (Shuman & Meador, 2003). Wirzba declares: “Community is a more fundamental ontological category than biology” (2006, p. 84). Humans are not autonomous organisms; they face their suffering together. Sabbath shows all people of faith that people are gifts to one another; that being present with those who are suffering does not take time away from life. Rather, God’s care
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Articles for the sick evidenced all throughout the Judeo-Christian Tradition shows all people that filling time with love is the very meaning of Sabbath.
For those who are experiencing brokenness of their bodies, of their relationships, of their spirits, Sabbath is the place where new life is celebrated, where those who are broken are made whole, where communities gather to remember the Divine Love and enact it among one another. The community that celebrates Sabbath together will be a community inspired by music, proceeding more deeply into God’s work of salvation through the freedom and beauty of rhythm and harmony. If entering Sabbath rest is the goal of parched pilgrims, music is the water that can sustain them.
As the salvation of Christ for Christians is a rejection of the sin and death that have come into the world, the rest of Christ is a condemnation of the sickness and suffering that accompanied them. Thus, Sabbath and music should be seen as directing one towards healing and life. Nonetheless, all freedoms ultimately are grounded in freedom from sin (Matthew 10:28). Earthly health, like life, is not eternal and is thus a limited possession. Therefore, resistance to sickness does not mean that human bodies will always be victorious over their limitations. Rather it means that persons of faith will resist allowing themselves to become captive to sickness (Galatians 5). Those living in Sabbath rest may have frail bodies, but will demonstrate quiet endurance, believing Pic 8 that they await glorified, imperishable bodies and eternal life (1 Corinthians 15:42-44).
Here resides the vital connection between music, Sabbath and healing for the believer. The miracles of Jesus on the Sabbath recounted in the Christian Scriptures inaugurate a new resurrection order characterized by healing, first of sin, but also of bodies. For the Christian individual healing stories must be read through the lens of Christ’s resurrection, the definitive sign that God’s kingdom has come and has triumphed over sin and all its effects. Healing is an incremental sign of that victory and a motivation for patience (Shuman & Meador, 2003). Often, the mysterious and difficult grace of God will not include bodily comfort or reprieve. However, music reminds all persons of faith that after tension comes resolution. Sabbath reminds them that the “suffering servant” (Isaiah 52-53) brings new life. Sickness is not good but has power only in the space of physical bodies. Time remains
full of Sabbath rest, to be filled with the Photo credit: Fletcher Fund music of creation. Lady Playing the Tanpura, Kishangar 1735
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Rest As noted in this article’s introduction, describing a biopsychosocial model for the therapeutic efficacy of music may be futile because music’s ability to resist sickness may be hidden from evidence-based medicine. Understanding music purely in the context of vital signs and validated tools may neglect its role in revealing to the sufferer a more enduring peace than mere anxiolysis, bringing meaning to lives and context even to suffering itself.
For centuries, philosophers have argued that music reveals order wrought from chaos, beauty emerging from the “spheres.” Members of the Christian Tradition believe that the order that music displays finds its culmination in the Sabbath rest where Christ’s resurrection has made available the freedom and healing built into the very fabric of creation. For many Faith Traditions, the power of music lies in its ability to shepherd human strivings from laudable but temporal goods to what is known as the eternal Sabbath. Music demonstrates that healing of bodies and relationships cannot be diagrammed on a flowchart. The experience of melody, rest, harmony, and rhythm provide an embodiment of the wholeness of a healed life, oriented not toward functionality, but with the beautiful and good.
Without a concept of the Sabbath rest that is embodied in the hearing and playing of music, the idea of healing is mechanistic and incomplete. Medicine, as a discipline dedicated solely to bodies in space, is unable to be oriented towards eschatological hope. In the Judeo- Christian Tradition, the healing of Sabbath supersedes the promise of medicine, pointing to the promise of freedom from sickness. However, even this good is subordinate to the freedom to experience joyful worship in a Sabbath community. Healing both derives its meaning from Sabbath and enables one to experience Sabbath, whether or not it includes a restored body. As German theologian Dietrich Bonhoeffer wrote in his commentary on the Psalms, the “great and holy rest” of Psalm 62 is like… …the crying child who feels the touch of his mother’s hand on his forehead. . . like a patient at rest before the doctor, like the elderly person rested in the face of death, and like all of us, standing in reverent respect before the silence of nature beneath a starry heaven – thus should our soul be at rest from its turmoil and wilderness and hate, before the eye of God (Bonhoeffer & Robertson, 2005, p. 28).
Rest indicates an acknowledgment that the world is not under human control and a quiet confidence in the providence of God.
Conclusion: A New Way to Listen Music is a mode of expression that has played important roles in all cultures since antiquity (Levman, 2000). In the 21st century, as with previous generations, music is propagated and consumed in ways that reflect the fashionable cultural milieu. Today, this means that music is often relegated to ambience for running, driving, or shopping in a department store or as a means toward personal contemplation or shaping one’s inner feelings. However, to dwell on the effects of music on the individual is to neglect historic theological reflections on its ability to draw listeners together into Sabbath rest, into healing and order for their lives.
When listening to music, the person of faith would be well served to consider not only their own feelings but the way in which the song draws their attention towards goodness
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Pic 9 Articles around them that is often taken for granted. A sense of the majesty of creation might draw listeners to seek a deeper relationship not only with their Creator but also their fellow creatures. Viewing music on a universal, communal scale might make those sharing music together become less insistent on music meeting their particular, individual preferences (think of debates over styles of music in places of worship), rather
considering how music can Photo by Larry Rogers enhance their life together. Mick Jagger and Keith Richards, Winterland 1972
https://commons.wikimedia.org/wiki/File:Jagger-Richards.jpg
Even today, there remain glimpses of music’s ability to spontaneously spur individuals to share life together. Those who have attended a popular music concert in the past four decades may have experienced the raising of the lighter (or now, the lighted cell phone) as high intensity anthems give way to a ballad. Instinctively, audiences raise their voices and lights in the darkness – an image of order from noise, creation from chaos. On a smaller scale, perhaps at a restaurant, you might find strangers joining an unrelated party in a rendition of “Happy
Birthday,” drawn into music by a celebrating community. And every Christmas, groups of joyful carolers visit the homes of neighbors calling them (often successfully) to join in singing songs celebrating Christ’s birth.
Music should saturate the life of the family and the faith community, guiding the individual to redirect their gaze from the inner self to the goodness of the people and creation around them. Music should resonate in the nursery and the nursing home. Profound moments of beginning and ending can be located in songs that celebrate the wonderful gift of life. Music should be a part of the daily functioning of the hospital and clinic, settings frequently characterized by noise and disruption of rest (Short et al., 2010). Spaces for silence and music could be crucial refuges for those struggling with their own suffering or that of a loved one.
From the Christian perspective, theological teaching suggests that people who yearn for healing should seek to experience the pervasive goodness of God revealed in hymns and symphonies. Those who are sick can hear the Triune harmony in the musical notes, see the Divine unity in the community of listeners and performers, feel the energy and delight of the Trinity as it gently vibrates through their broken bodies. For all in the Judeo-Christian Tradition, they need music to reveal the relationships that already exist between them, their world, and their Creator. Those who are willing to be present with those who are suffering are embodying the earliest philosophies of music that suggest that humans are not simply self- interested individuals, rather embedded in an ordered network of relationships. The goal of music for those who are sick is that they might enter God’s rest.
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Articles Pic 10 In the future, the Scriptures suggest that this rest holds eschatological hope for the Eternal and Ultimate Sabbath. But in the present, Sabbath rest offers freedom from want (Psalm 23:1), freedom to accept ever- dwindling bodies as gifts rather than as burdens, freedom to forgive others, and freedom from the alienation wrought by sin. Such freedom might precipitate physical healing or perhaps relief from anxiety and the related physiologic sequelae. More importantly it will rightly orient the needy patient to the mysterious goodness that surrounds them. The function of God’s community on earth is to bring freedom to the captive, rest to the weary, healing to the broken, order to the chaos of life. This role is embodied in the sharing of music one with another: from the ancient hymn to the lofty praise song, from
Artist: William Sydney Mount the majestic overture to the final lullaby. The Bone Player, 1856
Endnotes 1) Eschatology is theology that deals with the final events of human history.
2) In contrast, the second Biblical creation account found in Genesis 2:1-14 is characterized by attention to space. God’s work was located “in Eden, in the east,” where four rivers divide. This day of creation is portrayed as a single day. This account appears timeless; time is not ordered or divided into day and night. In this story of the site of creation, there is no Sabbath of space, no place of rest. In the parallel creation accounts, the only Sabbath of God occurs in the narrative that prioritizes time.
3) Exodus 19:5-6: “Now therefore, if you obey my voice and keep my covenant, you shall be my treasured possession out of all the peoples. Indeed, the whole earth is mine, but you shall be for me a priestly kingdom and a holy nation.” Pic 11 Photo by Mirealonu42
Florin Alexandru Stan playing the piano 2017 https://commons.wikimedia.org/wiki/File:Florin_Alexandru_Stan_piano.jpg
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OPEN FORUM
OpenArticles Forum
Gene Editing: A Brave New World?
Vaughan V. Caines, MSc, MA in Law (UK) Barrister, Forensica Legal Innovation House 46 Reid Street Hamilton, Bermuda HM 12 Tel: (441) 599-1915 Email: [email protected]
Author Note The author, a forensic scientist as well as an international Barrister and Attorney, is solely responsible for the contents of this article. The author has no financial conflicts of interest.
This article is a broad interdisciplinary discussion on the ethical issues surrounding history’s discoveries in gene editing. The discussion addresses various points and materials found in the academic and website sources listed at the article’s conclusion. The goal of this article is to open the door to critical questions and explorations of the issues at stake, both today and into the future.
Introduction The Past As Possible Prologue Currently, we are on the cusp of understanding and harnessing the power of our molecular biological information. Imagine a world where genetic diseases are not just manageable but curable. Then imagine a world where genetic mutations are curbed, cured or obliterated.
This article explores the relatively new and potentially societal changing Molecular Biology application CRISPR/Cas9, which provides the key to this Pandora’s box of possibilities. The aim of this article is to foster a dialogue surrounding this paradigm shifting application, which has the potential to change and shape society in a myriad of ways.
In November 2018, the world was informed that Chinese scientist Dr. Jiankui He claimed he had altered the DNA of twin girls to prevent them from contracting HIV.
Effectively, Dr. He has allegedly created the first genetically designed/edited babies. However, through his announcement Dr. He has brought into focus a compendium of issues that have previously been debated in the abstract. This cauldron of issues must and should be debated on a global scale.
This field of genetic research is exploding. Nevertheless, the minefield of associative concerns needs to be brokered and broached in order to responsibly advance the applications of such a powerful and monumental tool. Coincidentally, it has been reported in January 2019 that Dr. He was fired from the Southern University of Science and Technology in Shenzhen, in China’s Guandong province. His firing occurred following an investigation by officials in Guandong. The Ministry found that he broke national regulations against using gene-editing
Journal of Health and Human Experience Volume V, No. 1 115 Photo by Daniel Son ArticlesOpen Forum for reproductive purposes. According to an article in Nature, the investigation also found that Dr. He’s experiment ran afoul of national Chinese regulations forbidding people with HIV from using assisted reproduction. Chinese state media agency Xinhua also reported that, in order to circumvent the Chinese regulations, Dr. He experimented with blood from HIV-negative volunteers.
The Advancement of Molecular Biology How Did We Get Here? Molecular biology research has focused on the development of technologies to efficiently and reliably document, explain, and, over time, target genes with a view of changing the genome of living cells (also known as genetic code).
In 1953, building upon the earlier research of various scientists from around Europe, Watson & Crick derived the concept of the three-dimensional, double-helical model for the structure of DNA. This was then built upon by Ray Wu of Cornell University who, between 1970 and 1973, established and then developed and applied the first method for determining DNA sequences. Frederick Sanger adopted this and then advanced this strategy to develop more rapid DNA sequencing methods at the MRC Centre, Cambridge, in 1977. Advancements in sequencing were aided by the concurrent development of recombinant DNA technology.
New methods for DNA sequencing were then developed in the mid to late 1990s and were labeled the "next-generation" or "second-generation" sequencing (NGS) methods, thereby distinguishing them from Sanger’s earlier methods. In contrast to the first generation of sequencing, this technology was highly scalable, allowing the entire genome to be sequenced at once. In application, this second generation of techniques allowed the genome to be fragmented into small pieces, which were randomly sampled and then sequenced.
The mapping of an entire genome is possible because multiple fragments are sequenced at once in an automated process. This technology allows for insights into health and anthropological investigations into human origins. It thus has ushered in the realization of individualized or personalized medicine.
However, it has also opened the door to more room for error and concern. Several efforts to develop standards in the NGS field have been attempted to address these challenges, most of which have been small-scale efforts arising from individual labs. Most recently, a large organized, FDA-funded effort has culminated in what is termed the BioCompute standard, namely a more centralized construct.
Fast-forward to post-2000. The wider field of molecular biology is advancing as researchers seek to further explore the human genome. Therein begins the burgeoning interest in genome editing technology and genomic engineering.
One pillar of this expanding endeavor is “CRISPR/Cas9” or “CRISPR” which stands for Clustered Regularly Interspaced Short Palindromic Repeats. This technology can be programmed to target particular regions of genetic code and edit it at precise locations. This allows researchers to permanently modify genes in living cells and ultimately in organisms. This
116 Volume V, No. 1 Journal of Health and Human Experience OpenArticles Forum makes it theoretically possible, in the future, to correct mutations at precise locations in the human genome, thereby potentially treating genetic origins of disease.
That this new tool is simple and easily adaptable makes it amenable to genomic editing, which is also referred to as genetic engineering. This potential was realized in 2012 by the Doudna and Charpentier labs. However, it should be noted that this powerful tool is not without its limitations.
It should be also noted that the amount of genetic alteration, also known as Target efficiency, is one of the most important strictures or considerations when assessing a genomic editing tool. Previous methods and tools have achieved genetic alterations anywhere ranging from 1% to 50% in human cells. By contrast CRISPR/Cas9 has reported efficiencies up to greater than 70%. However, that is in zebrafish, plants, and human stem cells ranging from 2-5%. One study purported an efficiency of 78% in one cell mouse embryos.
Another aspect of the efficiency of gene editing is the incidence of off-target mutation. This is the propensity to cut not just at its target site, but also at unintended sites with similar sequences. These off-target cuts can occur across the genome and can lead to harmful mutations that impair a cell’s function or kill it outright. Off-target mutations are, generally speaking, more difficult to detect, and therefore require additional efforts such as sequencing the entire genome in order for the anomaly to be completely ruled out. The CRISPR system reduced, but has not eliminated, off-target mutations.
In a 2014 article in New England Biolabs, we are informed that the future is bright for the application of the CRISPR/Cas9 due its “simplicity, high efficiency and versatility,” and additionally, its being the most “user friendly.” These same researchers also commented that: “It is now clear that Cas9’s potential reaches beyond DNA cleavage, and its usefulness for genome locus specific recruitment… will likely only be limited by our imagination.”
Intersection: Gene Editing & Ethical Considerations In April 2015 the first article on editing the genome of human embryos was published by researchers in China. The global response was swift; and condemnation in the form of questions abounded. The following are some examples of such responses: “Chinese gene-editing experiment creeps out scientists” NBC News: https://www.nbcnews. com/health/health-news/chinese-gene-editing-experiment-creeps-out-scientists-n346916. “Homo sap is now a GMO. Shall we edit the genes of human embryos?” PLOS blog: https:// blogs.plos.org/onscienceblogs/2015/04/24/homo-sap-now-gmo-shall-edit-genes-human- embryos/. “Red alert over DNA mutation, editing of human embryos” (Nigerian) Guardian: http:// io.aibs.org/geneedit3.
The issue with this new and extremely puissant molecular biology technique, which makes gene editing faster, cheaper and more precise, is that it allows and promulgates not only the repairing of genetic mutations but includes the ability to add and alter genetic material. Because
Journal of Health and Human Experience Volume V, No. 1 117 ArticlesOpen Forum of its potential effects, not only on the scientific community but the world at large, a group of key stakeholders led by Dr. Duodna, one of the developers of CRISPR, met in January 2015 to discuss the application’s scientific, medical, legal, societal and ethical implications.
This impromptu meeting resulted in a call for a halt on human germline editing, and a large call on international dialogue for recommendations for moving forward. These calls where published in the 3 April issue of Science. An additional article of a similar nature in the same general timeframe was published by Dr. Edward Lanphier and Dr. Fyodor Urnov et al. Their article labeled human germline modification as “dangerous and ethically unacceptable.”
The National Academy of Science (NAS) convened an International Summit on Human Gene Editing, which was cosponsored by the National Academy of Medicine, The Royal Society and the Chinese Academy of Sciences in early December 2015. This symposium had the sole goal of wrestling with the potential worry of human genomic editing. An article written by Beth Baker after the symposium cited that Nobel Laureate David Baltimore addressed the symposium by stating, We’re taking on a heavy responsibility for our society because we understand that we could be on the cusp of a new era in human history… We should remember there is a larger context…-Aldous Huxley in his book Brave New World imagined a society built on the selection of people to fill particular roles in society with environmental manipulation to control the social mobility and behavior of the population… the warning implicit in his book is one that we should take to heart as we face the prospect of this new and powerful means to control the nature of the human population.
At the culmination of the meeting. the planning committee reached certain conclusions, namely that future research on germline and non-germline cells can continue but with the caveat that human germline editing research for the purpose of pregnancy cannot be performed. The planning committee based this on two considerations: the first being technical issues and safety, while the second considered the broader more contentious issue of societal consensus. In effect the Committee recommended that germline research should not be done simply because of the opinion of a researcher/scientist.
Unlike previous research that focused on non-germline cells of a patient with a genetic disease, the committee presciently articulated that informed consent should be considered differently for germline cell research. The Committee understood that in non-germline cell research the individual person solely considers the issue of consent. Contrast that with the issue of genomically editing a sperm, egg or embryo which would affect every cell of that unborn child and unknown future generations.
Creating a genetically modified embryo for the purpose of pregnancy gives birth to a compendium of ethical issues. For example, off-target genes would have to be considered if and when they occur and their frequency. Equally if the gene editing process was incomplete (for whatever reason) then a potential new set of issues and concerns emerge. Additionally, there are potential ethical and societal ramifications if function creep occurs and the technology is usurped under the guise of so-called improving humans in aesthetically pleasing ways instead of eliminating genetic disease. Further to this point, if or perhaps when the technology becomes precise enough for this thought to become viable, then questions emerge. Who decides on its
118 Volume V, No. 1 Journal of Health and Human Experience OpenArticles Forum use? Who should have access to such a tool? Some, such as Ms. Beth Baker Bioscience editor is incredulous at the hubris in reliance on the application of this tool to circumvent the natural order and improve on the established evolutionary design.
We only have to look to our initial subject scientist, Dr. He, for a snapshot, albeit incomplete, answer to these questions.
Regarding the application of CRISPR, United States Congressman Bill Foster, PhD views it as follows: “This is in some ways, an attack from the future on our shared humanity.” However, he also stated that by proactively laying the groundwork he hopes to avoid “a panicked overreaction” by his legislative counterparts.
In order to not seem completely reductive, there are many scientific and societal benefits from gene editing research. We are learning about human biology on the molecular level and the ability to eliminate debilitating genetic diseases as well as creating resistance to diseases. On a more meaningful and granular perspective, one scholar, Robin Lovell-Badge of the Francis Crick Institute, has detailed positive aspects: …obtaining glucose and lactose tolerance in humans; …obtaining nutritional value from currently indigestible plants; …maintaining muscle mass in the elderly; …and, potentially incorporating non-human traits into the human genome, such as tolerance to drought, heat or cold etc.
The possibilities are infinite. However, with these endless possibilities comes the specter of uncertainty, which fuels the present ethical quandaries.
There is a prevailing theory that common diseases affect many more genes than diseases that affect few in the population. The latter would be isolated to perhaps a single genetic mutation. Overall, the interaction of our genes is barely understood. For example, Eric Lander, the founding Director of the Broad Institute, noted that a gene that lowers an individual’s risk of acquiring HIV increases that individual’s risk of contracting and eventually succumbing to the West Nile Virus. Correspondingly, a gene that reduces the risk of type-1 diabetes links with a higher risk of Crohn’s disease. Concomitant with uncertainty is the task of balancing risk/ rewards in the context of the unborn.
Barbara Evans, a professor of law at University of Houston, elucidates that primarily the study of medical bioethics and its resultant framework tends to focus on the individual patient/ research subject and the risks to that individual. For the examples detailed above as well as others, the application of CRISPR calls for a paradigm shift for the manner for which we must tackle these and other affiliated issues. It is understandable that we, as a society, must learn about and grapple with such monumental issues caused by this powerful scientific tool and its myriad of applications and uncertainties.
Dr. Baltimore posits that ethically in certain circumstances there may be no alternative. If so, then perhaps we should use CRISPR to “…help out…a yet to be born child.” And that withholding the value of the modification on the basis that it might lead to other things is
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“abdicating responsibility.” George Church, a professor at Harvard Medical School, argued that the real battle is where to draw the line between disease prevention and other goals such as aesthetic enhancement.
Historian Daniel Kevles, an expert on eugenics, informs us that the line between disease prevention and enhancement can be blurred and even change over time, which may be dependent on what is regarded as the characteristics of health in future times. He further posits that modern efforts to improve the human species will be driven by “biocapitalism” --- a new relationship between human and capital based on technological advances and consumers. Though this phenomenon is currently exhibited in areas of assisted reproductive technology, thought should be given to the ability of the gene editing technology to be weaponized in a way inconsistent with the current application of assisted reproductive technology. Some may not agree and be in complete congruity with Kevles, and may maintain skepticism of his assessment of this particular situation. Each should draw one’s own conclusions.
Social scientists at the aforementioned December 2015 NAS summit raised concerns surrounding access and decision-making specifically for people with disabilities who would or could be potentially or directly affected from the application of CRISPR. The social scientists also warned that a technique such as CRISPR should serve a broader purpose that could help eliminate or disarm social or cultural hierarchies (for example, “ableism” versus “disableism”) instead of reinforcing or exacerbating them. As with anything that directly and permanently could affect the human experience, there was no general consensus reached at the Summit. However most seem to agree the need for a broad societal consensus on what will be permissible moving forward. Landers ended the aforementioned summit with this discerning comment: We should be very straightforward about how ignorant we are… Humility is one of the hardest challenges for any one, but especially when you have to compete for funding and attention… So it’s good [to be reminded] of how much humility is appropriate in this case and how ignorant we are. Ignorance is nothing to be ashamed of -- its denial of ignorance that we should be worried about.
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Ravindran, S. (March, 2018). New Methods to Detect CRISPR Off-Target Mutations. The Scientist. Retrieved from: https://www.the-scientist.com/lab-tools/new-methods-to- detect-crispr-off-target-mutations-30013.
Reis, A., Robb, B., Tzertzinis, G. (2014). CRIPSR/Cas9 & Targeted Genome Editing: New Era in Molecular Biology. New England Biological Lab Inc, 1.
Sanger, F., Nicklen, S., Coulson, A.R. (1977). DNA sequencing with chain terminating inhibitors. Proc. Natl. Acad. Sci. USA. 74(12): 5463-77.
Taylor, M. (2019). A Harvard Geneticist Wants To Sell A Magical Molecule To Reverse Aging. It Works. In Mice. HuffPost. Retrieved from: https://www.huffpost.com/entry/david- sinclair-aging-harvard-resveratrol_b_5c61ee61e4b038faea137fb9
Venter J.C., Adams, M.D., Myers, E.W., Li, P.W., Mural, R.J., Sutton, G.G.,…Zhu, X. (2001). The sequence of the human genome. Science. 291 (5507), 1304-51.
Watson, J.D., Crick, F.H. (1953). The structure of DNA. Cold Spring Harb. Symp. Quant. Biol. 18: 123-31.
Wu, R. (1972). Nucleotide sequence analysis of DNA. Nature New Biology 236(68): 198-200.
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The Need for Balance: Exploring Law and Policy Regarding the Protection of Personal Data
Brett Cook, JD, LLM Associate General Counsel, Data Privacy/Regulatory Compliance Fort Worth, Texas Email: [email protected]
Author Note This article will explore the need to balance the desire to collect and process personal data with the need to preserve privacy. Emerging European Union (EU) and United States (US) state laws will significantly impact the collection and processing of personal data by global corporations. The inherent tension between the need to collect personal data and maintain privacy protection shapes how we perceive businesses who rely on this information to increase profits and advance humanity.
The author is solely responsible for the contents of this article. The contents do not necessarily reflect the position of any of the institutions the author serves. The author has no financial conflicts of interest.
Introduction In his book Zero to One: Notes on Startups, or How to Build the Future, Peter Thiel explains that the next world-changing company will discover something that is important to people and difficult to achieve. For example, Air BnB discovered the need for affordable lodging and an untapped resource: property owners who desire to easily and reliably rent their unoccupied space. Likewise, Uber and Lyft discovered a way to connect people who need fast, reliable transportation with people who can meet this need without maneuvering through the bureaucracy of a heavily-regulated taxi industry.
Today, another need has emerged: the need for a secure and transparent data collection process. Companies are searching for avenues to combine their desire for large amounts of personal data with a process to safely collect, retain and transfer this information. Previously, a lack of federal and state regulations allowed companies to utilize self-regulating data privacy policies to assure consumers that their information was being responsibly handled. These policies continue to add value by providing a comprehensive explanation of how and why personal data is collected, which produces competition to create policies that resonate with customers. Nonetheless, recent EU and state laws governing personal data collection demonstrate that consumers are reluctant to allow capitalism and innovation to drive this process.
GDPR: The EU’s Comprehensive Data Privacy Law Last May, the EU implemented the General Data Protection Regulation (GDPR), a law that provided explicit data protection and privacy for all individuals within the EU and the European
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Economic Area (EEA). The GDPR also regulates the export of personal data outside EU and EEA areas. In summary, if you are an EU company or a company that processes EU citizens’ personal data, you are now subject to heavy fines if you are not compliant with the GDPR.
Definition of Personal Data and Processing The impact of the GDPR is significant because of its broad definition of “personal data” and “processing.” The GDPR defines personal data as any information relating to an identified or identifiable person (aka data subject). An identifiable natural person is one who can be identified in particular by reference to an identifier such as a name, an identification number, location data, or an online identifier. This also includes people who can be identified by one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social information.
Processing personal data is defined as any operation or set of operations which are performed using personal data or on sets of personal data, such as collecting, recording, organizing, structuring, storage or adaptation. Alteration, retrieval, consultation, use, dissemination or otherwise making the data available is also considered data processing. Under the GDPR, EU citizens have the following rights: (1) to request a copy of the data that was collected; (2) demand that their data be deleted; (3) be notified when their data has been hacked; (4) provided an opportunity to consent to the collection of their personal data; and (5) data protection safeguards, which must be built into products and services from the earliest stage of development.
Additionally, the GDPR prohibits forced consent and any form of service bundling in order to require consent. Consequently, access to services can no longer depend on whether a user gives consent to the use of data. The GDPR had an immediate impact in the US. Google, Instagram, WhatsApp, and Facebook were sued when the GDPR was enacted in May 2018 due to “forced consent” practices which required users to consent to personal data collection in order to use their products.
Expansive Territorial Scope The increased territorial scope of the GDPR is a significant change to the regulatory landscape of data privacy, as it applies to all companies processing personal data of people residing in the Union, regardless of the company’s location. Thus, GDPR applies to the processing of EU citizens’ data, collection activities that relate to offering goods or services to EU citizens and behavior monitoring that takes place within the EU. Non-EU businesses processing this data also have to appoint a representative in the EU.
The GDPR has impacted US Fortune 500 companies who rely on online data collection to create and improve their products. In May 2018, Forbes reported that the GDPR has cost US- based companies nearly $7.8 billion in compliance activities to avoid potentially multi-million- dollar fines and penalties.
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Corporate Governance Programs are Now Required The GDPR places onerous accountability obligations on controllers and processors to demonstrate compliance with the law. Some of the elements that must be demonstrated are explicit. However, some are implied, such as the implementation of appropriate governance models so that data protection receives an appropriate level of attention within the organization. As a result, large organizations will need to implement formal data protection programs that include training, audits and C-level oversight. These requirements are relatively new to the US private sector. The GDPR has created a forcing function to ensure corporate oversight. On the other hand, US federal agencies, such as the Department of Defense (DoD) mandate that departments maintain robust data privacy oversight programs. This form of directed accountability is one of several areas where US public agencies have been ahead of private corporations regarding personal data protection.
US Data Privacy Laws The California Consumer Privacy Act of 2018 On June 28, 2018, California lawmakers enacted the California Consumer Privacy Act of 2018 (CCPA). This is a sweeping privacy law, similar to the GDPR, with comparable reach and implications. The law takes effect on January 1, 2020, and will be enforceable in California and applies to California consumers. The CCPA is the first US state law to incorporate certain provisions already enacted in Europe under GDPR. However, companies that restructured their operations to comply with GDPR will have to expand their efforts under the CCPA. As discussed below, other states have followed suit, requiring businesses to trace and track the source of their data.
CCPA’s Definition of Personal Information The CCPA defines “personal information” (PI) as any information that identifies, relates to, describes, is capable of being associated with, or could reasonably be linked with a particular consumer or household. Specifically, PI includes: (1) identifiers such as any unique personal identifier or IP address; (2) electronic network activity information, including, browser histories, search history, and any information regarding a consumer’s interaction with a website, application or advertisement; (3) audio, electronic, visual, thermal, and olfactory information; and (4) geolocation data.
In addition, the Act specifies that any “inferences drawn” from various data elements of PI to create a profile about a consumer reflecting the consumer’s preference, characteristics, psychological trends, preferences, predispositions, behavior, attitudes, intelligence, abilities and aptitudes constitute PI. The CCPA’s inclusion of PI data elements used to create consumer profiles directly impacts Bay Area tech companies who rely on this data to measure consumer preferences, behaviors, tendencies, etc. to predict market trends and focus advertising.
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Under the CCPA, consumers will have a right to the following actions: (1) request that a business disclose the categories and specific pieces of personal information that it collects about the consumer, the categories of sources from which that information is collected, the business purposes for collecting or selling the information, and the categories of 3rd parties with which the information is shared; (2) request deletion of personal information and would require the business to delete upon receipt of a request; (3) request that a business that sells the consumer’s personal information, or discloses it for a business purpose, disclose the categories of information that it collects and categories of information and the identity of 3rd parties to which the information was sold or disclosed; and (4) to opt out of the sale of personal information by a business.
Businesses are prohibited from discriminating against the consumer for exercising these rights, by charging the consumer who opts out a different price or providing the consumer a different quality of goods or services.
Covered Entities The CCPA applies to businesses that collect information from California residents and meet at least one of the following thresholds: (1) have over $25 million in annual gross revenue; (2) buy, receive, sell, or share for commercial purposes the personal information of 50,000 or more consumers, households, or devices; or (3) derive 50 percent or more of their revenue from the sale of consumers’ personal information.
Additional States With Similar Data Privacy Laws Several other US states have introduced and passed legislation that mirrors the protections provided by Europe’s GDPR and expands data breach notification rules. These state laws are intended to provide consumers with greater transparency and control over their personal data. For example, California and Vermont’s data privacy laws go beyond breach notification and require companies to make significant changes in their data processing operations.
The following are some important notations regarding these state laws. • Alabama, Arizona, Colorado, Louisiana, Oregon, South Carolina, South Dakota and Virginia have passed laws defining personal data and specifying data breach notification requirements. • Vermont’s data privacy law regulates data brokers who collect and sell consumer data to 3rd parties. • Commercial entities that conduct business in Nebraska and license, own or maintain computerized data that includes Nebraska resident’s personal information must
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implement and maintain reasonable security procedures and practices. In addition, commercial entities must contractually require non-affiliated, 3rd party service providers to institute and maintain reasonable security procedures and practices. • Under Colorado’s data protection law, organizations who maintain, own or license personal identifying information in the course of their business are accountable for protecting personal information. Similar to the GDPR, Colorado requires covered entities to: (1) develop and maintain written policies on the disposal of personal information; and, (2) implement reasonable security procedures and practices commensurate with the sensitivity of the processed data and the size and complexity of the company. • Iowa’s law includes companies that operate internet sites, online services, online applications, or mobile applications that are used primarily for K-12 students. It requires operators to implement and maintain security procedures and practices appropriate and consistent with industry standards and applicable state and federal laws, rules, and regulations.
At least 24 states have laws that address data security practices for private sector entities. Most of these laws require businesses that own, license, or maintain personal information about a resident of that state to implement and maintain reasonable security procedures and practices appropriate to the nature of the information and to protect personal information from unauthorized access or disclosure. Given the global nature of data processing, companies will need to determine when to apply the GDPR versus state data privacy laws to maximize their effectiveness.
Tech Industry Personal Data Collection Policies Facebook Facebook is a well-known social media company that relies on data collection. Facebook collects the content, communications and other information consumers provide when they use its products, including when they sign up for an account, create or share content, and message or communicate with others. Facebook also collects user metadata, such as the location of a photo or the date a file was created. The company utilizes this data to improve its products; provide analytics and business services; and promote safety and security. Facebook also uses this information to conduct research and innovation in support of general social welfare and public interest groups. The collected data can also include what consumers see through features Facebook provides, such as their camera, so they can suggest masks and filters that users might like or give tips on using camera formats. Further, Facebook employs data privacy policies that govern the collection and use of consumer data by Facebook and 3rd party developers who use their platform.
In some ways, Facebook’s policies extend beyond GDPR and US state law. Their policies forbid developers from using data collected on their platforms to make hiring decisions or sell or license data obtained through Facebook. Additionally, data obtained from Facebook cannot be used to make decisions regarding financial eligibility, including whether to approve or reject a loan application or how much interest should be charged.
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Apple Similar to Facebook, Apple also uses personal information to create, develop, operate, deliver, and improve its products, services, content and advertising. Apple uses personal information for internal purposes such as auditing, data analysis, and loss prevention and anti- fraud purposes. They collect a variety of information, including names, mailing addresses, phone numbers, email addresses, device identifiers, IP addresses, and location information. Apple also collects credit card information when users create an Apple ID, apply for commercial credit or purchase a product.
Apple has cracked down on apps that do not communicate to users how their personal data is used, secured or shared. As of October 3, 2018, Apple requires that all apps have a privacy policy. Though the app makers themselves would be ultimately responsible for their customers’ data, Apple, as the platform where those apps are hosted, is acknowledging that it has some responsibility too. All apps must include a link to their privacy policy and it must clearly identify what data the app collects, how the data is used and how a user can revoke consent or request deletion of their data. The policy must also confirm that any third party with whom the app shares user data will provide the same protection of user data as stated in the app’s privacy policy.
Who is Accountable for Data Privacy? Major tech company platforms are being held accountable for the behavior of 3rd party app developers and any data misuse that occurs as a result of their policies governing those apps. The extension of a company’s data privacy policy to 3rd party developers is not surprising. These developers use the data, services and tools obtained through platforms like Facebook and Apple’s Operating System (OS) to enhance their products and expand their impact. Facebook CEO Mark Zuckerberg, for example, was required to appear before the US Senate about the Cambridge Analytica incident, where data from 87 million Facebook users were inappropriately obtained and used by a 3rd party developer. In response to app developer misuse incidents like Cambridge Analytica, companies like Facebook and Apple have added muscle to their data privacy policies. Today, these tech giants, and others like them, employ independent policy enforcement and investigation divisions dedicated to identifying apps who violate their policies and preventing future misuse.
Conclusion As it is known today, “big data” processing has shaped the way companies expand impact and increase profits. Successful tech companies, like those who provide social and professional networking platforms, are fueled by millions of apps and tremendous amounts of personal data. If processed correctly, this data can reveal precious, hidden information and lead to ground- breaking discoveries. Nevertheless, there is a need for balance and wisdom. Data can help advance who we are and what we can develop, but we must respect the personhood of those whose data provide acts of learning and innovation. In 2018, privacy commissions and industry regulators moved their chess pieces into place. The message: Privacy and data responsibility must be as important to the officers of a business as profitability is to the investors.
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References Apple Privacy Policy. (2019, February 18). Retrieved from https://www.apple.com/legal/ privacy/en-ww/.
Facebook Data Policy. (2019, February 18). Retrieved from https://www.facebook.com/ policy.php#.
Facebook for Developers. (2019, February 18). Retrieved from https://developers.facebook. com/policy/.
GDPR Key Changes. (2019, February). EU GDPR.Org. Retrieved from https://eugdpr.org/ the-regulation/.
GDPR: noyb.eu filed four complaints over "forced consent" against Google, Instagram, WhatsApp and Facebook. (2018, May). European Center for Digital Rights. Retrieved from https://noyb.eu/wp-content/uploads/2018/05/pa_forcedconsent_en.pdf.
National Conference of State Legislatures, (2019, January). Retrieved from http://www.ncsl. org/research/telecommunications-and-information-technology/data-security-laws.aspx.
Perez, S. (2018). Apple will Require all Apps to Have a Privacy Policy as of October 3. Tech Crunch. Retrieved from https://techcrunch.com/2018/08/31/apple-will-require-all-apps- to-have-a-privacy-policy-as-of-october-3/.
Persson, S., Serrato, J.K., Fernandez, A., & Rudawksi, A. (2018, June 29). California passes major legislation, expanding consumer privacy rights and legal exposure for US and global companies. Data Protection Report. Retrieved from https://www.dataprotectionreport. com/2018/06/california-passes-major-privacy-legislation-expanding-consumer-privacy- rights/.
Regulation (EU) 2016/679. Official Journal of the European Union, Vol. L119 (4 May 2016), pp. 1-88.
Serrato, J.K., Cwalina, C., Rudawski, A. (2018, July 9). US states pass data protection laws on the heels of the GDP. Data Protection Report. Retrieved from https://www. dataprotectionreport.com/2018/07/u-s-states-pass-data-protection-laws-on-the-heels-of- the-gdpr/.
Smith, O. (2018, May 2). The GDPR Racket: Who's Making Money From This $9 bn Business Shakedown. Forbes. Retrieved from: https://www.forbes.com/sites/ oliversmith/2018/05/02/the-gdpr-racket-whos-making-money-from-this-9bn-business- shakedown/#336a48db34a2.
The California Consumer Protection Act. California Assembly Bill No. 375.
Thiel, P. (2014). Zero to One: Notes on Startups, or How to Build the Future. New York: Crown Publishing Group.
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Compliance versus Moral Behavior in Human Research: The Need for Compassion and Care
Frederick W. Luthardt Jr., MA, Doctor of Bioethics Director, Office of Human Subjects Research, Compliance Monitoring Program Johns Hopkins University School of Medicine 1620 McElderry Street Baltimore, Maryland 21205 Tel: (410) 955-3008 Email: [email protected]
Author Note This article is based upon the author’s doctoral capstone project, and explores the power domains in human research. The aim is to highlight the role of compassion and care as a means to avoid what is argued as the power and primacy of regulations in human research, which can overshadow the importance of morally directed human research that ought to prioritize the personhood of the research participant. The author is solely responsible for the contents of this article. The contents do not necessarily reflect the position of any of the institutions the author serves. The author has no financial conflicts of interest.
Introduction: The Domains of Powers in Human Research In human subjects research, hereafter referred to as “human research,” the question is raised as to whether compliance with established rules and regulations leads to moral behavior in the treatment of persons participating in clinical investigations. Or, in a reversed formulation of this question, does attention to ethical principles, and intentionally acting consistent with one’s moral positions, lead to compliance with the regulatory requirements? It is the first iteration of the question that is of interest to those that are concerned about the treatment of research participants. Thus, the thesis of this article is that for investigators to conduct research with human participants ethically, it is not enough merely to follow the rules for their own sake, or to act only to avoid violating regulations or being non-compliant, which might precipitate possible punitive ramifications. Rather, it is contended that ethical research ought to prioritize the foundational elements of meaningful human interactions, namely, compassion and care for the other. One of the key interactions in research, and the focus of this article, will be on the informed consent process.
It is posited that in research with human participants, and in particular where the informed consent form or the informed consent process is involved in research with humans, there are three overlapping interactive domains, within which there are competing interests. These interests concern first, the power of regulations and enforcement; second, the power of the researcher; and third, there is the power of the person, who is approached to become a research participant. It is the aim of this essay to explore these domains and reflect upon some considerations that may reconcile the tensions between them, while emphasizing that research involving human participants should be first grounded in the building and sustaining of interpersonal relationships that is rooted in compassion and care.
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Domain 1: The Power of Rules/Regulations and Enforcement When Human Subjects Research (HSR), using the conventional phrase, is conducted in the United States, and is regulated by Food and Drug Administration (FDA) (Protection of Human Subject, 2012) and/or subject to Department of Health and Human Services (DHHS)/Office of Human Research Protections (OHRP), known as the Common Rule (Protection of Human Subjects, 2019), there are numerous formal regulations that govern such research. Of specific and critical interest is one of the first touch points in research, namely when an investigator meets with the prospective participant during informed consent encounter. For this activity, there are explicit regulations that establish the requirements for informed consent of research participants, with these rules being statutory and enforceable by the US Government. Information and guidance materials are also available to researchers to provide background context and explanations of the ethical aims of maximizing and protecting research participant rights, safety, and well-being. In these guidance materials, it is noteworthy that informed consent is referred to as a process (“Informed Consent FAQs,” 2019), which rightly raises the informed consent interaction beyond the mere informed consent document, to encourage an open communicative engagement between the researcher and participant. Further, the regulations themselves are buttressed by the Belmont Report (The Belmont Report: Ethical principles and guidelines for the protection of human subjects of research, 1978) that articulates the ethical principles that are fundamental to research with humans. These principles include, first, autonomy, in the form of respect for persons; second, beneficence, in the promotion of best-interest/benefit and avoidance of harm; and third, justice and fairness, as considered in the recruitment of participants, as well as the equitable distribution of risks and benefits from research.
Informed consent, as an application of the principle of autonomy, is intended to maximize respect for the research participant, by establishing the conditions necessary for a person to make a voluntary, informed decision to join a study. But, as will be discussed below (Sections 2 and 3), there is a tension that confronts investigators who are concerned about achieving compliance with the regulations, while simultaneously attending to research participants’ values of self-determination, best interests, and fairness. There are real barriers to the fulfillment of this ideal, especially as it concerns the question of who is at the center of the informed consent activity and whose interests are being served.
When considering the process of informed consent, it is common to read in human research literature, including research manuscripts and even protocols and research plans themselves, that informed consent from participants has been or is to be obtained (“Informed Consent FAQs,” 2019) from the participants studied. Further, Federal regulations themselves and guidance statements use the same word frequently and additionally direct that informed consent to be executed must be legally effective. (“Informed Consent FAQs,” 2019) Two issues emerge here. First, regarding obtaining informed consent, it evokes a scenario where at the outset of the informed consent encounter, the informed consent form is presented to the prospective participant, and after he/she has had an opportunity to read the document and presumably have any questions or uncertainties addressed, it is signed and returned to the researcher, to conclude what can be described as a transaction. This process is what is expected per Federal Regulations for the Protection of Human Subjects (21 CFR 50), which subsequently satisfies the statutory requirement for “documentation of informed consent.” (Protection of Human Subjects, 2012). An investigator may feel at ease that he/she has acted in
Journal of Health and Human Experience Volume V, No. 1 131 ArticlesOpen Forum accordance with the regulations, and that the informed consent process has ended as fully and legally compliant: his/her obligations to the rules and participant have been fulfilled.
Second, in attaining informed consent, investigators are enjoined by regulations to assure that the process meets the standard of legal effectiveness. It is reasonable to assume that the adjective “legal” is indeed dominant in the minds of many investigators. To act legally is to act in accordance with established law; to act otherwise, is to act illegally, which may precipitate punishment. Also, the legality of an act presumes its permissibility and adequacy to achieve a specific result, which is to say following a deliberative process per an applicable law implies that in so doing, the act is proper. For informed consent, the first order of legal effectiveness is that a prospective research participant signs and dates the document, and does so prior to the commencement of specified research procedures. But in satisfying the regulatory or legal requirements, it is not unreasonable to question whether this achievement can overshadow or even serve as a surrogate to the moral dimension of the process. In other words, is acting legally the same as behaving morally?
For researchers who are aware of the myriad rules and regulations established by FDA and DHHS, they are also often cognizant of the punitive measures that can be implemented when the statutes are violated or discovered from an inspection (e.g., FDA audit). The punishments can range from restrictions to fines to debarment. If noncompliance findings related to his/her research are identified or reported, an investigator’s professional and academic career can be irreversibly damaged. Thus, it is a pragmatic consideration for researchers to maximize compliance, and even to give exclusive attention to the regulations: the professional consequences of non-compliance are too great to disregard. It is interesting to note further that compliance itself is not only an act, but something that can be evaluated and measured objectively by regulatory agencies (e.g., FDA’s Bioresearch Monitoring Program (Compliance Program Guidance Manual for FDA Staff, 2008). Simply put, compliance with a regulation can be confirmed with documentation, like a physically producible and properly signed informed consent form, which thus demonstrates achievement of the statutory requirement. Specifically, the degree to which an informed consent exhibits the research participant’s signature and date is legally effective, it can be confirmed with other information from the research file.
However, there are other nuanced aspects to the informed consent process that cannot be externally or continuously assessed in real-time, retrospectively, or quantitatively by an inspector. Indeed, other parts of the informed consent discussion (e.g., answering participant questions, assessing comprehension, assuring voluntariness, etc.) are in most encounters left to the investigator, such that he/she alone determines the adequacy or satisfactoriness of a participant’s understanding of the research to be undertaken and his/her willingness to enroll. Further, at this time, the consenter can affirm in his/her mind that the complete consent process was not just adequate, but fully attendant to the ethical principles both articulated in the regulations and consistent with his/her moral code. But beyond the isolated researcher-participant encounter, objectively affirming compliance with these subjectively interpreted activities cannot be easily assessed by a third party. Moreover, it would be very difficult to evaluate an investigator’s internal moral comportment or his/her intentions during the informed consent process, and most likely impossible from a retrospective assessment. In summary, the moral quality of the consent process is exclusively between the consenter and the consented, with only the researcher being in the position to apply his/her motivations and moral discernment. The second and succeeding sections should present the various questions and aspects of the topic being explored.
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Domain 2: The Power of the Researcher Investigators in research using humans are empowered by their professional roles, which might also be potentially influenced by his/her gender, education, socio-economic status, and race. In our society, the authority of the clinical researcher or scientist is readily assumed and accepted as legitimate. Moreover, when a clinical investigator is also a physician, research on his/her patients (with an existing physician-patient affiliation) may also be argued to overlap with a parallel researcher-participant relationship. In human research the investigator has increased power and influence over the prospective participant: he/she is the expert. Further, when an investigation is introduced to the potential participant and an informed consent form is presented, the researcher holds a de facto position of power: he/she knows the research (the hypothesis, the new drug being studied, the medical procedures involved, etc.). There is what could be described as an asymmetrical power relationship, an imbalance that may not be remediated due to presumed inherent differences between the researcher and the participant.
An additional facet of the power of the researcher is the responsibility to act in a manner that is consistent with standards of practice that are universally accepted by that person’s respective profession (e.g., physicians, nurses, psychologists, etc.). To identify oneself as a professional, he/she is expected to have requisite education, with a verifiably high level of competency and technical expertise. In addition, provisions are articulated in professional codes that members take part in specialized training to maintain, refine, or advance their respective skill-sets. For researchers conducting investigations on human persons, along with applicable professional expectations they are mandated by regulations to be “qualified and experienced.” (Responsibilities of Sponsors and Investigators, 2018). Assuming successful achievement of professional status, a researcher with requisite expertise and training may project power in the form of an unquestioned or unassailable assurance to participants that he/she is both competent and skilled. Additionally, the investigator is thus assumed to be both authoritative and in control, as a dominant force that is typically societally legitimated and accepted. And, this power is often accompanied by public assumption that the professional also has a high moral character.
It is interesting to mention that along with the power of the researcher, there is also the power of research itself: Are pragmatic considerations and regulatory compliance often a priori considerations in human subjects research (using the common phrase)? Traditionally, the answer would be, yes. The real-world truism for the pharmaceutical and medical device industries, Federal funders, and foundations, is that human subjects research must include human subjects. Therefore, the success of a clinical trial depends on adequate enrollment, which for researchers is dependent on funding or driven by the benefits of academic promotion or publication demands. These and other forces can insinuate many pressures. It is not suggested that investigators under such pressures are given over to conduct non-compliant or unethical research, but the stresses from many quarters are real. Performing research in a manner compliant with regulations is critical for investigators as they intend to make their own contributions to science, generalizable knowledge, and human health and well-being at large.
Domain 3: The Power of the Research Participant, as Person For this part of the discussion, it should be emphasized that the participant’s power, as explored below, can vary across a wide continuum. Specifically, research participants that are children have diminished legal power by virtue of not being a legal adult. Also, participants who
Journal of Health and Human Experience Volume V, No. 1 133 ArticlesOpen Forum are incarcerated may be argued to have reduced power, secondary to their being in a restricted penal environment, which often is characterized as being potentially coercive. Lastly, research participants who have diminished decisional capacity (e.g., due to mental illness) have decreased power, which has to be delegated to a legally authorized representative to advocate for the person’s best-interests. In short, there have been and are many research participants with various challenges that render them especially vulnerable and disempowered. As such, additional regulatory protections, along with expanded considerations from Institutional Review Boards (IRBs), have been established. Thus, for the purposes of this article, research participants are those individuals commonly regarded as non-incarcerated adults that have presumed decision- making capacity.
Regarding the power of the participant, there are two basic aspects, namely the pragmatic or objective value to research, and the power that rests in the research participants’ intrinsic personhood. For the first, there is the empirical power that research participants have by virtue of the fact they are necessary for research to take place, for new drugs and devices to be developed, and for new knowledge to be generated about human health, disease, and wellness. However, for the second facet, in the history of human research, persons experimented upon have in many situations been overtly and tragically reduced to mere objects to be studied, often for nefarious and unscientific ends. History is replete with events where persons have been relegated to the status of a thing, with only scientific use-value, reduced to a number as part of an “n” needed to achieve statistical significance, or belittled to a demographic data point. With the reduction or elimination of these persons’ humanity, unscrupulous scientists conducted their research driven by a perverse rationale that the results of their experiments took priority over the value of the persons on whom they experimented. As is well known, in the name of science, people have been treated in abjectly immoral ways, where their power was taken away, as they were exploited, degraded, injured, denied care, and even murdered (e.g., the Nazi Medical Experiments, the USPHS Syphilis Study at Tuskegee, and many others). And, it is indeed the recognition of this troubling history, that research regulations and guidance have been developed in the United States and other nations to affirm and safeguard the humanity of research participants.
Yet, in referring to the regulations, the current Common Rule (45 CFR 46), and accompanying guidance, can be seen to render the potential research participant as a passive receiver of information, to whom the responsibility is exclusively delegated to the investigator to provide material – which the investigator deems relevant – to the prospective participant. In other words, although critical to the one side of the investigator-participant dyad, the guidance (and its recommendations) does not explicitly or adequately acknowledge the power of the participant. Put another way, in simply relying on the legal requirements, an investigator may believe that he/she gives power to the participant by providing information that “…is most likely to assist a prospective subject or legally authorized representative in understanding the reasons why one might or might not want to participate in the research.” (Revised Common Rule, 2019). What is at issue here is the risk in practice that a prospective participant will be put into a position where he/she must understand the research in the investigator’s terms. In other words, the responsibility falls to the participant to understand the research: the purpose, procedures, risks, benefits, etc.
It is necessary to re-iterate that the power of the research participants is intrinsic and defining of his/her fundamental personhood. As noted above regarding the ethical principle
134 Volume V, No. 1 Journal of Health and Human Experience OpenArticles Forum of autonomy, every person is imbued with the autonomous ability to act in a way that is self- determined and freely directed toward his/her best-interest. Even with varying degrees of mental capacity, emotional influences (e.g., fear, uncertainty, unrealistic optimism in the proposed outcomes of a study, etc.), and other characteristics of an individual, autonomy nonetheless exists, even if in diminishing degrees. Participants have the power to agree to be in a study because they are driven by the desire to join, to contribute to the advancement of knowledge, or because it may help themselves or others. Equally, they also have the power to decline, and to do so freely for their own reasons. And it ought to be the case that at all times researchers recognize that participants have the essential power to choose to remain in a study, or to withdraw at any time. The research participant is always greater than the research, and should not have his/her personhood subjugated by the power of the researcher or the research itself.
Conclusion: The Power of Compassion and Care To summarize the above, in the power domains of research regulations and the researcher, both are characterized by rules of behavior that are held to be by nature compulsory. Further, legal and professional requirements are externally established, with oversight mechanisms built in to assess, confirm, and enforce compliance. These requirements are held to have objective validity and force, with an ex post facto binary outcome: either one is in compliance or one is not. Further, like research itself, satisfying regulatory requirement is beholden to data and evidence that can be surveilled and analyzed. But what of moral behavior in human research and the moral status of research participants? Are these amenable for scrutiny under the gaze of an inspection apparatus and measured to gauge adherence to a quasi legal requirement? Because the informed consent process, not unlike the encounter between a physician and patient, is by-and-large a private interaction, it is not feasibly amenable to objective or analytically focused observation by a third-party, or in the guise of a quality-control exercise.
Thus, the power of the research participant qua person ought to be intentionally and reflectively valued by the investigator, and construed as constitutive to a deeper relationship that is characterized by compassion and care for the other. In research, compassion, etymologically defined as suffering with, would manifest in the relationship between the researcher and the participant. For example, a researcher, observing that a prospective participant is fearful or distrustful, would be sensitized to the person’s concerns. The participant’s issue would necessarily take priority over stark efforts to recruit the person, whereby the researcher would listen to what that person’s feelings are. Further, the responsibility of the investigator would be not to remediate or dismiss such feelings, or overwhelm the concerns with information; but rather the researcher would be cognizant of these matters as being part of participant’s whole being. Caring, by definition to have concern for or interest in another, is complementary to compassion. Here, a researcher would additionally have an abiding and substantial interest in the participant as a person, who has an identity, family, culture, and history, i.e., the participant’s story. A relationship authentically based on caring would never diminish an individual to a research subject (i.e., object).
But how does a researcher develop and apply these attitudes? Can they be displaced or misdirected by the demands of legal and professional requirements? Scientists, medical professionals, and clinical investigators are educated and trained in their respective fields, earn credentials, and practice within the boundaries established by professional codes and legal statutes. Some may even have training in human research per se. But is there an equivalent
Journal of Health and Human Experience Volume V, No. 1 135 ArticlesOpen Forum programmatic approach to building one’s moral character? A person can be taught ethical principles, bioethics, or specifically research ethics. What is the role of a researcher’s internalized or personal moral convictions, orientation and conscience? It is not to discount facilely that a researcher has his/her personal morality already in place, which guides that person to act consistently with that orientation. However, as discussed above, at times, the power of regulations can overshadow moral judgment, such that achieving valid results in an investigation and doing so in strict, rote compliance with legal requirements defines the research activity, perhaps to the detriment of the personhood of the research participant.
Thus, for consideration is the place of compassion and care in human research. Like morality, these are not amenable to being solely the content of a training manual. Moreover, as elements of moral behavior toward others, are compassion and care not compelling for their own sake? Regulations and laws are obligatory because of their power, which are reinforced in their being acceptable and enforceable. To comply with rules effectively assures legal and scientific acceptance based on agreed upon standards. And the ethical principles in human research explained above are fundamentally important to articulate moral values and moral experience and judgment. But the mere intellectual or rational comprehension of them is not complete without the subjective recognition of the other person, namely, the research participant. Ethical rules and principles become like regulatory rules and regulations when compassion and care are not part of one’s relationship with the research participant, as another person essentially infused with his/her own power. Along with the concept of legal effectiveness is a parallel notion of ethical effectiveness. Does this approach permit and encourage the integration of compassion and care?
Unfortunately, ethical effectiveness, like legal effectiveness, is not necessarily sufficient in and of itself during the research-participant encounter. Although open to debate, in only acknowledging the ethical principles, it still might not occur that the deep and subtle dimensions that distinguish the research participant as an individual person are addressed. A tendency may be argued that investigators might only understand that the ethical principles themselves, potentially detached from the participant as person, are to be sought or achieved as a fixed outcome. For example, the act of obtaining informed consent would be performed to satisfy the objective ethical requirement to promote individual autonomy. Autonomy, in this example, is sought for itself, a res extensia to the person, possibly devoid of the nuanced implications that would necessitate compassion and care.
To conclude, in thinking about the power domains, the charge then for investigators is to listen not only to their own internal moral voice, but also, and most importantly, they also ought to strive to harness compassion and care in order to feel the personhood of the participant, and not to rely on the one dimensional achievement of compliance as a primary accomplishment, devoid of the moral perspective and the value of the participant as person. Endeavoring in this way builds an enduring relationship that realizes that the researcher and participant are in fact on the same journey together.
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References 21 CFR 50 (2012), Protection of Human Subject
21 CFR 312 (2018), Responsibilities of Sponsors and Investigators
45 CFR 46 (2018), Protection of Human Subjects
45 CFR 46 (2019), Revised Common Rule, Protection of Human Subjects
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1978). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. [Bethesda, Md.]: The Commission.
U.S. Department of Health and Human Services. (2018). Informed Consent FAQs. Retrieved from https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq/informed-consent/ index.html
Editor’s Note The previous article is an excellent example of the tension between normative ethics (what one ought to do) and virtue ethics (what a morally good person does). Normative ethical standards are often codified in lists of rules. You shall do this; you shall not do that. Most professional organizations have such lists, and it may be argued that our law codes embody normative ethical standards. But what moral force empowers such rules? Why ought we to keep them? Are we morally obligated to keep rules because they are rules? Alternatively, does keeping rules ensure that we are acting in the highest moral sense? The article above argues that there are aspects of morality that transcend simple rule keeping. Aristotle would agree. In Nicomachean Ethics, Aristotle focused his attention on the actor rather than the action. In other words, he was more interested in good people than in good rules. He asked what makes people virtuous and how do they act when they are? Such discussions are long overdue. Ethical issues about research and healthcare are too complex and important to be distorted downward to a list of do’s and don’ts. In fact, all of these issues are at the very heart of our new Open Forum section. In each of the section’s articles in this edition and those to come, we are invited and urged to dive into these deep and abiding issues.
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PROFILES IN COURAGE: THE NEXT CHAPTER
Profiles in ArticlesCourage
The Next Chapter
George Brummell’s Journey Light for a Darkened Life
Jan K. Herman, MA The Historian of Navy Medicine (ret.) Tel: (202) 431-6901 E-mail: [email protected]
Author Note The opinions expressed here are those of the author alone. The author has no financial conflicts of interest.
And So We Begin..... The scene was improbable. George Brummell, a blind veteran, occupied the back seat of a tandem bicycle hurtling down Route 1 through Vietnam’s Hai Van Pass at 45 mph. “It crossed my mind what it might be like to go down on the road at this speed,” he recalls. He need not have worried. His partner, pumping furiously from the front seat, was Greg LeMond, three-time Tour de France champion. What were the two riders doing in Vietnam in the first place?
The year was 1998 and George Brummell had returned to Vietnam, having lost his sight there in a mine explosion more than 30 years earlier. He was on a 16-day 1,250-mile bicycle trek through Vietnam, sponsored by World T.E.A.M. (The Exceptional Athlete Matters) Sports, a non-profit that organizes events for the disabled. The ride, billed as the “Vietnam Challenge,” teamed people having disabilities with able-bodied participants. Those persons without use of their legs rode special hand-powered bikes, while blind riders pedaled from the back of tandem bikes. Together, the riders, 39 war-disabled American Vietnam veterans plus 14 war-disabled North Vietnamese soldiers, rode together from Hanoi to Ho Chi Minh City (formerly, Saigon). The event was later chronicled in the 1998 documentary Vietnam, Long Time Coming.
Surprisingly, Brummell had seriously considered returning to Vietnam even though his long nightmare with injury and blindness began in those jungles on the other side of the world. “I had no problem with that,” he calls to mind. Most veterans he knew who had fought in that war expressed no desire to “go near the place.” He had talked to some people who had gone back and explored the now peaceful country. “Wow, I’d like to have that opportunity, too. The opportunity came up and I participated.”
* * * * *
Even before he mounted that tandem bike in Hanoi, George Brummell had already been on a long journey. Born in Federalsburg, on Maryland’s Eastern Shore in 1944, George seemed to have the odds stacked against him from the start. His parents divorced when he was just an
Journal of Health and Human Experience Volume V, No. 1 141 ArticlesProfiles in Courage infant. He was raised by his grandmother in Federalsburg’s poor black neighborhood in a spare house that lacked an indoor toilet. Nevertheless, Susie Simms was a religious, hard-working woman who was employed in a local cannery and who grew her own vegetables. Even though she treated the young boy with the dignity she afforded everyone else, she was also a strict disciplinarian who cut the youngster little slack. Grandma Simms may have been illiterate, but she expected her grandson to do better in life.
Despite his grandmother’s good intentions, George was offered little opportunity due to poverty, a broken family and segregation. He was very good in math but showed little interest in his other school subjects. Much like other adolescents in this kind of despairing situation, he “acted out” in the form of bad behavior that included gambling, drinking and a dangerous and destructive liaison with an older married woman.
George soon found himself on the wrong side of the law, and it finally took a Maryland jail cell to help focus his attention. Another school suspension and removal from his grandmother’s home into foster care temporarily stabilized his dire situation.
In 1961, at age 17, he dropped out of high school and enlisted in the Army. The military became George Brummell’s lifeline. He had little trouble with boot camp discipline, and many of his fellow soldiers became male role models he never had. George had always absorbed good ideas from those he encountered and admired. In the Army, he noticed men who made good soldiers and took cues from them. Highly competitive, he wanted to be the best.
Shared experiences and privations during a deployment to Korea, as well as another short deployment to West Germany for a NATO maneuver, solidified his intention to make the Army a career. “I was glad I’d chosen the military and happy to be off seeing the world,” he muses. George reenlisted in February 1964.
While on a temporary assignment at Fort Devens, Massachusetts, he met Blanche, fell in love and got married. Six days after the wedding, George was on his way to his next overseas assignment --- South Vietnam.
The closest George had ever been to a war zone was his stint in Korea where active hostilities had ended 10 years before he arrived. Although tensions there were still high, bullets had not been directed at him or his buddies. But he soon would learn the jungles of Vietnam were different. “When we got there, it was nothing like we had trained for,” George remembers. “It was a completely different operation.”
Fighting an unseen enemy became an everyday routine as patrol followed patrol, and Viet Cong snipers did their dirty, stealthy work killing or wounding his comrades --- sometimes one or more at a time. After one brutal encounter with a hidden Viet Cong, George later recalled every member of his platoon spraying the jungle undergrowth with automatic rifle fire and hurling grenades in the direction of the VC sniper. “None of us got so much as a glimpse of the shooter,” he relates. Every fearful step forward risked triggering a booby trap, mine, or another ambush. After their first two-week patrol, Viet Cong guerrillas had killed five of George’s comrades and wounded seven. His platoon’s return fire had not yielded a single confirmed kill.
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More combat ensued. Following one jungle firefight, two soldiers from another platoon approached George’s position carrying a stretcher. He recounts with sorrow. “My heart fell. Another one! Whoever it was, he was dead--a poncho covered his face. Who was it this time? Will it be me next?”
The young soldier’s prescient thought came to pass just a month later while on another “search-and-destroy” mission. As he and several other soldiers slowly moved down a jungle road thought to be seeded with mines, a bulldozer moved just ahead, every so often scraping the surface to uncover or detonate a lurking explosive beneath.
George vividly recollects the deafening concussion that suddenly knocked him off his feet. “I felt myself whirling and flying, floating in a strange bubble of silence for what seemed like minutes. Then I started my descent, just as I was hit by a second, equally forceful explosion that slammed me to the ground with a jarring impact. Was I dying? Dead? The face of my grandmother popped into my head --- in her red head rag and green flowered dress.”
Catching sight of that bulldozer’s blade hitting the ground was the last thing the 22-year- old George Brummell ever saw. His life had changed forever.
Salvaging Life George’s injuries were catastrophic. He suffered burns over 60 percent of his body, and shrapnel fragments were embedded in his stomach. He sustained facial, chest, and leg injuries, and a broken arm and mangled left hand that would never fully function again. After initial assessment and treatment in Vietnam, he ended up at Brooke Army Medical Center in San Antonio, Texas, the Army’s premier trauma hospital. When he pleaded with the medical staff to remove the bandages from his eyes, he heard a doctor say “The bandages are off.” It was then he realized he was blind. Subsequent evaluations by ophthalmologists revealed that his vision would never return.
As with most patients who are suddenly blinded, George was predictably distressed and angry. He experienced a tremendous sense of loss, helplessness and self-pity. George would never see Blanche’s face again or gaze upon the infant boy born while he was overseas. He remembers thinking at the dark, tormenting time, “Now what? How could I help raise my new son? What can a blind man do? I’d seen blind people and how vulnerable and pathetic they seemed, tapping their way down sidewalks, needing someone to guide them through airports, unable to drive, or read, or play catch with a child, or look into a wife’s adoring eyes as they kissed.” As he lay helpless in his hospital bed, George often thought being killed in Vietnam would have been a better outcome.
He insists it was his wife’s acceptance of his injuries and her constant attention and support that enabled him to begin to salvage his life. Blanche joined him at Brooke and hardly left his side at the medical center. He remained there for several more months of additional surgeries, occupational therapy and recuperation before moving to Akron, Ohio, where Blanche’s mother lived. It was now time for him to begin more intense training at the Edward Hines, Jr. VA Hospital, located west of Chicago.
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George was fortunate. Hines had the nation’s most advanced clinical programs in blind rehabilitation. At Hines, he was better able to accept his loss of sight after he had the opportunity to be around other blind people, some who had been sightless for many years. The skilled staff taught him how to sense subtle cues and function and navigate independently in a sighted world, everything from negotiating busy streets to reading a braille watch. “At Hines I had been taught not to carry any bills over a twenty and I had a billfold with three sections --- one for fives, one for tens, one for twenties. Singles I carried in my pocket.”
Deprived of sight, George became acutely aware of his other senses --- sound and smell, and he learned to adapt to his surroundings. “I no longer could read people by their expressions, only their voices and actions,” he remembers. He began dealing with the people he encountered with enhanced awareness. And the better he mastered and appreciated his new reality, the more he realized he could make a go of it. Blindness would not hold him back to make a new future for himself and his family. He left Hines VA Blind Rehabilitation Center in April 1967, just a year after being wounded.
In reality, George’s new life was beset with misfortunes and personal heartaches. He returned to Akron to join Blanche, but finding a job that satisfied his ambition proved difficult. He found Goodwill Industries’ make-work projects demoralizing such as tearing old electric lamps and irons apart and sanding furniture. Cracks in his marriage, which later resulted in divorce, also set him back as did another mindless job packaging light bulbs for $1.30 an hour. “There was a little ironic humor in a blind man packing light bulbs,” he recalls, “but there was bitterness, too. How I wished I could screw one of those bulbs in the top of my head and produce light for my darkened life!” Training to run a blind vending stand was equally unsatisfying and short-lived.
After flailing around for some time trying to jump-start his life, several of George’s friends encouraged him to try college. Although he was a high school dropout and blind, he decided to give it a try. With a GED in lieu of a high school diploma, he began attending the University of Akron and thrived. While at UA, he was invited to a VA event in Cleveland where he was awarded vet-of-the-year for excelling in his university studies.
George took seven years to earn a bachelor’s degree, and when he graduated from Akron, he enrolled in a master’s program for social work at Case Western Reserve University. He never finished. An employment representative for the Blinded Veterans Association (BVA) phoned him about two openings for field service representatives. George interviewed and got one of those jobs, relating, “Sometimes I regret not continuing and getting my master’s and even a PhD, but I think I made the right choice because I could have had a masters degree or a PhD and no job. It was great and I really felt good having the job. But on the other hand, I was scared to death because I didn’t want to fail.” Understating his feeling of triumph at the time, he calls to mind “being both excited and frightened, but it wasn’t a bad feeling.” The new job would be aiding other blind veterans like himself, and George was more than ready to begin his new career.
Empathy, Expertise and Inspiration George was responsible for visiting blinded or visually impaired veterans in seven states in the Midwest. His job duties included aiding them in applying and receiving VA benefits and
144 Volume V, No. 1 Journal of Health and Human Experience Profiles in ArticlesCourage entitlements, and helping them settle long-active claims. He found he was very good at relating to blinded vets, many of whom were either living alone, down on their luck, and who had no one to help them navigate the Department of Veterans Affairs’ bureaucracy. In many cases, he encouraged them to take advantage of the VA’s blind rehabilitation programs. He says, “I wanted them to know that as a blind person, you can travel independently, be responsible, and get a job.” His pitch was inspirational to many. Having been in that situation himself, he had expertise and a good dose of empathy.
His service to veterans led to lifelong friendships. One of the many people George aided during his career with the BVA was a visually impaired World War II vet with a frustrating and unsettled claim going back many years. After George’s intervention, the claim was resolved to the tune of $200,000. “My wife and I have been friends with the vet and his wife ever since. Years ago they invited us to their 50th wedding anniversary, and we had a place of honor at the head table.” In 1994, George had married Maria, whom he met when she accompanied her cousin to a party for the visually impaired.
George’s proficiency at his job eventually earned him a promotion to National Field Service Director of the Association, a post he held until 2004 when he stepped down. After being with the Blinded Veterans Association for 20 years, “I didn’t want to be on the job until they kicked me out. I wanted to leave while I was on top so I left on a real high,” he proudly says.
Turning Memoir into Print George has never come down from that “high” during retirement, although he would be the first to downplay the meaning of the word “retirement.” While attending undergraduate school at the University of Akron, he found he had a real talent for writing, a skill required for most of his courses.
At that time, George took on a project he had long contemplated--a memoir. He muses, “I had a man cave in the basement of my house. I couldn’t sleep one night and went down to the basement and started recording my life story. The cassette tapes had 30 minutes on each side. I had my life story down on that 60-minute tape.”
The problem: How to transcribe what he recorded. George’s best efforts were not satisfactory because he could not see what he had typed. To help with his courses, he hired a woman paid by the VA to read and write for him, bearing in mind that “we didn’t have computers like we have now.” She typed the words and phrases that he missed on the tape. In time, he recounts, “thanks to the technology that allows a computer to ‘speak’ words, I could haltingly write and edit my thoughts.”
In a remedial English course, George asked the instructor if he could use some of the material he had written for his memoir to hand in for a class assignment and she agreed. So George had her input as far as editing and critiquing and “doing her thing as an instructor.” Two other instructors agreed to mark up and critique the other papers he turned in. George was not only honing his writing skills but also steadily moving ahead with his memoir.
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When he moved to Washington, DC, to assume his role as National Field Director, he continued to write. After retirement, George stayed in the game, volunteering at the VA Medical Center in Washington, recording veterans’ stories while in VA hospice care. After the recordings were transcribed, he took them home to edit. “I’m one-handed so I’m a bit slow typing, but at one time I was up to 35 to 40 words a minute!” The biographies appeared in the VA Medical Center newsletter and circulated among the other hospitals in the VA system.
Once George learned to use a computer, he hired a woman who transcribed everything into a Word file. That proved to be a turning point because George could now go back and add to or edit what he had written. And that is how his memoir became reality. Shades of Darkness: A Black Soldier’s Journey Through Vietnam, Blindness, and Back was published in 2006.
A New Pastime with Imagination The memoir only stoked George’s passion for writing, a pastime that nourished his imagination and creativity. And he was good at it. He loved reading novels but knew he could never compete in the fiction world. Because he has always loved young people, George contemplated writing a children’s book. One day he and his wife Maria visited the Philadelphia Zoo to see a special exhibit on moles. Even though the animals were behind glass, she began describing their activity. “The moles were climbing on top of each other, traveling backwards and digging tunnels. It was all very fascinating and stimulating to me.” When he returned home, he began researching this captivating mammal, coming across many other facts about moles.
George began working on a book with a mole as the protagonist. “Because of that animal’s lack of vision, I figured that was a subject I knew well so I could apply some of my life to the story.”
At the time, George’s granddaughter Emma was learning to play the violin, and he began sharing his stories about moles with her. Emma instantly became an additional inspiration. He linked his main character --- the mole --- with the violin. Three years later in 2013, George published The Mole and the Violin.
Following that success, George had even more fun with the next installment in what was becoming a mole series, The Mole and the Violin, Part Two: A Bunny's Odyssey, published in 2018. This book features a growing cast of characters. The mole shares his adventures with a mouse and two rabbits that provide rapid transportation upon their backs for mole, mouse, and violin, eluding tormentors to find their way home.
And at this very moment, yet another children’s book is already under way. In it, George will skillfully educate his youthful readers as they follow the plot of the new work. The mole and his friends will encounter two specialized worms –- a silkworm and an inchworm. The magical process of how the silkworm produces silk and how the inchworm measures the cloth made from it will result in a set of new clothes for the story’s engaging characters.
What is the storyteller’s creative routine? Down in his basement sanctuary, George savors a glass of wine as he begins writing in late afternoon. “Some people have a beginning and an ending when they write. I don’t. I just write and get creative as I go along.” That imagination, enhanced by a blind man’s acute senses sharpened over the past 63 years, has illuminated the once “darkened life” of a truly extraordinary man.
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Reviews
Book Review
“Becoming”
By Michelle Obama Crown Publishing Group New York (2018)
Michael Krentz, MD, MPH Independent Author Independent Consultant, Health Care & Public Health MBO Partners Norfolk, Virginia Tel: (202) 997-4757 Email: [email protected]
Author Note The insights or views expressed in this review are those of the author. They do not reflect official policy of any of the institutions the author serves. The author has no conflicts of interest.
Introduction “Now I think it’s one of the most useless questions an adult can ask a child—What do you want to be when you grow up? As if growing up is finite. As if at some point you become something and that’s the end.” — Michelle Obama, BECOMING The August 1969 Woodstock phenomenon included a young Joan Baez crooning “We Shall Overcome,” Blood Sweat & Tears singing “God Bless the Child,” and Mexican immigrant Carlos Santana’s career-launching performance. Halfway across the country on the South Side of Chicago, five-year-old Michelle LaVaughn Robinson plinked through musical scales on an old upright piano downstairs from her parents’ apartment. Her beloved, yet demanding, great-aunt Robbie gave lessons to a constant stream of aspiring musicians.
Michelle would later write, “The sound of people trying…became the soundtrack of our lives.” The precocious student completed the basics, then worked her way through prescribed consecutive songs in the piano book, relishing a “magic in the learning.” Soon she broke Robbie’s rules and mastered an advanced song, which she proudly played for her mentor. Rigid Robbie reacted with predictable outrage, but Michelle’s parents “appreciated my feistiness and I’m glad for it. It was a flame inside me they wanted to keep lit.”
Did it ever.
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The fire lit in the pasture of Woodstock propagated through decades to inspire future generations of young Americans. Similarly, the passion inside Michelle Robinson guided her into adult life. Over the years, that internal glow would flourish far beyond the South Side to illuminate the White House, the nation, and the world.
In candid, powerful language tinged with pathos, Becoming describes not only the life-journey of a singular black girl, but also the parallel growth of a society ever striving to define itself.
Summary “Becoming Me” “My family was my world, the center of everything.”
Like most Americans, Michelle’s ancestors came from someplace else. She sprang from roots transplanted to Chicago from the deep South during the post-slavery Great Migration of African- Americans. Her father, Fraser Robinson, descended from slaves in South Carolina. Her mother, Marian Shields Robinson, hailed from similar origins in Alabama. Her grandfather, nicknamed “Southside,” so resented the brutal existence of hate and “stymied aspirations” that he distrusted even his white dentist. Fraser, though denied union membership because of race, remained committed to his job as a boiler technician for the city. Refusing to give in to progressive multiple sclerosis, he never missed a day’s work. Marian Robinson stayed home to rear her children with a parental mindset Michelle praises as “a kind of unflappable Zen neutrality.” In contrast to great- aunt Robbie’s rules-based rigor, Marian Robinson taught her son and daughter to develop their own counsel. “I’m not raising babies,” she’d tell them, “I’m raising adults.”
In adolescence, Michelle worried through her ascendance to a mostly white magnet high school. “My first months at Whitney Young gave me a glimpse of something that had previously been invisible—the apparatus of privilege and connection, what seemed like a network of half- hidden ladders and guide ropes that lay suspended overhead, ready to connect some but not all of us to the sky.” In a mantra repeated through future life passages, she wondered, “Am I good enough? . . . It was doubt about where I came from and what I’d believed about myself until now. It was like a malignant cell that threatened to divide and divide again, unless I could find some way to stop it.”
Typical teenage angst? Not every adolescent grows up in a transitional neighborhood abandoned first by the white people, then by the blacks able to move out; a milieu whose racial mix transforms from a white to a black majority where “kids know at a very young age they’re being devalued.” Teenager Michelle Robinson stood on the daunting divide that any American who is not a heterosexual white male must one day confront.
Michelle responded to those external and internal challenges with Yes, I can. She reasoned that “. . . failure is a feeling long before it’s an actual result. If you don’t get out there and define yourself, you’ll be quickly and inaccurately described by others.”
When a condescending guidance counselor said she was “not Princeton material,” Michelle fumed in silence. “I’ll show you.” She not only graduated from Princeton but also from Harvard Law School. “And in the end, I hadn’t needed to show her anything. I was only showing myself.”
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“Becoming Us” If opposites do attract, Michelle Robinson and Barack Obama were a perfect match.
Michelle: Family-rooted, driven overachiever, meticulous planner, punctual and organized. Prefers verbal communication and socializing in groups.
Barack: Unique offspring of a multicultural blended heritage, idealist, lives in the moment, multidimensional, questioning, intellectual. Prefers ponderous letters to spontaneous phone calls.
Their initial meeting did not augur a future relationship or a twenty-six-year-plus marriage. As a fresh summer associate at Sidley Austin Chicago law firm, Barack came under Michelle’s mentorship. They were the only African-Americans in the firm. He showed up so late for their first session that she almost wrote him off before he arrived—not the only time in their life he would keep her waiting.
Despite their apparent incompatibility, a relationship ignited. Soon they cohabited the apartment where Michelle grew up. Family-oriented traditionalist Michelle wanted marriage and children, but free-spirit Barack “was in no particular rush.” Each owned a contrasting perspective: “He saw marriage as the loving alignment of two people who could lead parallel lives but without forgoing any independent dreams or ambitions.” For her, “marriage was more like a full-on merger.” Later, while they celebrated his completion of the bar exam, he shocked her with a traditional yet dramatic public proposal. They wed in October 1992.
Michelle intuited that her drive to become a lawyer threw her into a lifestyle she regretted. She had striven to achieve the aim but did not relish the life. Barack, meanwhile, veered toward a visionary political career that would test their marriage.
She reveals with soul-wrenching candor their struggle to have children when Barack, still afflicted with chronic tardiness, commuted each week to Springfield as a state senator. She suffered the often demeaning gamut of fertility-testing and optimization, usually alone and resentful, left to rely on Barack’s “flooring it up the interstate after a late vote so that he could hit my ovulation window.” Unsuccessful, they resorted to in-vitro fertilization to conceive their two daughters.
Early days as a family waxed discordant. Michelle adjusted her own way of life to provide her girls the family-centered stability and predictability she remembered. Barack “always had his eyes on some far-off horizon, on his notion of the world as it should be. Just for once, I wanted him to be content with life as it was.”
Accustomed to a nuclear and extended family “where everyone always showed up,” Michelle begrudged her new reality—a triad of breast-feeding baby, restless three-year-old, and a partner whose unpredictable political schedule forced her to be responsible for most everything in the home. Despite his good intentions, Barack’s unreliability in keeping time commitments rankled her. At the end of each week, she delayed dinner or kept her daughters up to greet their father when he returned from Springfield. She learned that On my way expressed optimism and enthusiasm to be home, not an exact truth. Almost home became “not a geo-locator but rather a state of mind.”
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Distressed for their marriage, Michelle cajoled Barack into couple’s counseling where they learned to separate weapons from wounds. Michelle ceased being “caught up in the notion that everything was unfair and then assiduously, like a Harvard-trained lawyer, collecting evidence to feed that hypothesis. I now tried out a new hypothesis: It was possible that I was more in charge of my happiness than I was allowing myself to be.” She describes this epiphany as her “pivot point,” her “moment of self-arrest.” The home-to-family conundrum she solved by installing new boundaries and an ironclad schedule for dinner, baths, and bedtime—holding Barack responsible to either make it on time or not. She returned to her core wishes for her girls “to grow up strong and centered and also unaccommodating to any form of old-school patriarchy: I didn’t want them ever to believe that life began when the man of the house arrives home. We didn’t wait for Dad. It was his job now to catch up with us.”
Their new normal suffered more challenging onslaughts as Barack’s political career skyrocketed. From community organizer to state senator to U.S. senator, his magnetism and vision captivated a burgeoning audience of devotees. After his speech at the 2004 Democratic National Convention launched him into the national limelight, the unspoken question became not if but when he would run for President of the United States.
When Barack Obama requested his family’s approval to pursue the Democratic nomination for the 2008 presidential election, Michelle consented. She did not want him to be President, but agreed because she thought he could not win. “We can just sort of get this out of the way,” she thought. Then they could build the stable family life she craved.
No one was more surprised than Michelle Obama when she became the heir-apparent to Laura Bush as First Lady of the United States.
“Becoming More” As if to mirror the realities of her experience during the ensuing presidential campaign and two terms in the White House, this section of the book accelerates and swirls as a Vitamix of public and private challenges, heartbreaks, and triumphs. We see a strong but sometimes uncertain woman, a devoted wife and mother, an advocate for ordinary people, an uneasy yet inspired icon: the first black woman to preside over a “house built by slaves” that was also a “fortress disguised as a home.” With adroitness honed by years of self-becoming, Michelle Obama balanced the pressure of being an exemplar of American opportunity against her earnest intention to establish as normal a life as possible for her daughters—all the while supporting the leader of the free world, himself a novelty in American history. One consolation. Because her husband worked a short stroll from the family quarters, he came home for dinner most nights to cherish a consistent relationship with his wife and daughters.
The chronicle of Mrs. Obama’s well-known public initiatives, such as the famous garden, the Let’s Move campaign, and her support for military families, affords interesting behind-the- scenes insights. They pale against her painstaking efforts to produce a traditional life-experience for her daughters, especially as they entered adolescence. One delightful anecdote describes Michelle and Malia evading their Secret Service shadows to escape the fortress on foot, albeit only to a secluded courtyard, to witness the fervor of the crowd across the street celebrating the Supreme Court’s historic judgment on marriage equality.
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The White House fortress did not shelter Michelle and her family from mean-spirited, malicious assaults on her character and that of her husband. She reflects, “For more than six years now, Barack and I had lived with the awareness that we ourselves were a provocation.” Although she understood and often disregarded the sources, the hate hurt—more so when the attacks threatened the security of her family. In the book, she tempers her few mentions of the forty- fifth president, yet leaves no doubt about her feelings. She discusses the lies questioning Barack’s birthplace and citizenship with direct, explicit language: “Donald Trump, with his loud and reckless innuendos, was putting my family’s safety at risk. And for this, I’d never forgive him.”
Sobering words from an honest, admired, and guileless woman who later proclaimed, “When they go low, we go high.”
Reflection Neither the Woodstock performers nor the half-million Americans who joined in the landmark spectacle could have predicted its culture-ripping impact on subsequent generations. Their spirit and voices symbolized the peace, love, and freedom that underlies America’s greatness.
The family-kindled flame in Michelle Robinson persisted through each twist of her adult journey—enlightening her progression from a girl who created drama by playing with dolls to an accomplished paragon who forged her own true-life drama. Telling her story, she remains ever perceptive, not only to her heritage, but to the challenges and opportunities imposed upon women and people of color by a white-male-derived culture. The glow from her internal fire and passion for truth reflect the power of free will and moral excellence that not even the darkest forces can extinguish.
In today’s contentious national milieu, the “go-high” road makes a proper legacy for Michelle Obama, not as the first black FLOTUS, but as the learned, honest, intuitive, family- devoted, and committed citizen-advocate whose strength rests in witnessing and enhancing the good in others. The beneficiaries of her keen vision are myriad: her husband, children, extended family, women, minorities of every kind, disadvantaged youths and adults, military families, and a host of Americans whose names we will never know.
Michelle Obama’s becoming story transcends the singular narrative of a descendant of slaves, who journeyed from meager beginnings to a seat of immense influence on myriad hearts and minds. It becomes the story of America itself—the real great America of humble origins, unlimited aspirations, and indomitable spirit and vision—the America that eclipses the vagaries of politics and self-adulation—the American reality that lights the cores of all citizens who strive to become their best dreams, and proclaim:
Yes, I can.
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Film Review
On the Basis of Sex
A Focus Features Film Written by Daniel Stiepleman; Directed by Mimi Leder; Produced by Robert W. Cort. (2018)
Janae Moore, DMin, LCSW Adjunct Professor School of Social Work Morgan State University Gaithersburg, Maryland Tel: (301) 442-3713 Email: [email protected]
Author Note The insights or views expressed in this review are those of the author. They do not reflect official policy of the institutions the author serves. The author has no conflicts of interest.
Introduction There is a transcendent call within all of us if we would only hear and heed it. It is a call to who we are as human beings. It defines and affirms our right to be—our right to be as all others have this same right to be. Spiritually, it beckons us to ascend to the highest of heights to honor this right for ourselves and for others. None of us can genuinely or legitimately obtain the highest state of existence unless we recognize and promote the beloved community to which we all rightfully belong.
The future Chief Justice Ruth Bader Ginsburg not only responded to this call but was passionately consumed and driven to answer it. She staked all of whom she was then and is now to engage in the age-old battle to dismantle discriminatory laws and to change systemic and cultural mindsets and practices that denied rights, opportunities and freedoms to women merely on the basis of gender. She went forward with moral justice on her side, while simultaneously standing upon the shoulders of many sisters and brothers who fought and sacrificed to affirm and live that truth. The Fourteenth Amendment was her weapon of choice: All persons born or naturalized in the United States and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United
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States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws (Section 1).
Film Summary On the Basis of Sex is a two-hour biographical legal drama that depicts the launching of the law career of Supreme Court Justice Ruth Bader Ginsburg, a career that formally began with her being one of nine white women in a class of approximately 500 admitted to Harvard Law School in the fall of 1956. Ruth began law school as a wife and mother of a one-year-old daughter, Jane. Felicity Jones is cast as Ginsburg and Armand Douglas Hammer plays her beloved husband, Martin Ginsburg, best known as Marty.
From the film’s outset, Ruth’s strength, courage and intelligence become apparent as she enters Harvard with a fierce determination to excel despite the very blatant, insensitive and condescending white male culture and environment in which she found herself. This “patriarchal (and racial) reality” is clearly reinforced when the then Dean of Harvard’s Law School, Erin Brisbane, asks the incoming law class the question: “What does it mean to be a Harvard man?” In a subsequent scene in which he and his wife are hosting a dinner at their home for nine women law students, Brisbane adds yet another patriarchal insult to his continuing female injury. He pompously mentions that it has been six years since Harvard began accepting women to its Law School. He then requests the female law students to stand up, introduce themselves and tell those gathered why they are at Harvard “occupying a seat that could have otherwise gone to a man”—a white man, undoubtedly. Ruth quickly and satirically shares that she is there to learn how to best help her husband, Marty, who is a second-year law student at Harvard. Fortunately, neither her quickness nor her satire is lost on Dean Brisbane or others in the room keen enough to note her fighter spirit and wisdom.
Shortly after Ruth’s enrollment at Harvard, Marty is diagnosed with testicular cancer. In a tender and intimate scene in which Ruth gets in the hospital bed with him and affirms that they are fighting his cancer together, we next see her attending classes for him as well as for herself. It is because of her meticulous notes and assistance typing his papers that Marty, while in cancer recovery and healing, is still able to graduate from Harvard Law School. Ruth also carries the majority of the parental responsibilities for daughter Jane as well.
After Marty gains employment with a prestigious New York law firm, Ruth is adamant that they will remain together as a family. Thus, she meets with Dean Brisbane and requests an academic transfer to Columbia University in order to finish her law degree as well as remain with her family. Dean Brisbane does not support her desire to transfer despite Ruth pointing out that she, after two years at Harvard, is number one in her class. She also reminds him that he has allowed male students to do the same. Despite telling the dean that Marty could potentially relapse without her close by, Brisbane heartlessly remains adamant. The answer is still no. Ruth’s decision to withdraw from Harvard and complete her degree at Columbia is unequivocal. In 1959, she graduated, tying with another student for first in the class.
After obtaining her law degree, Ruth met with “the good ’ole white boy” network of resistance to her being hired to practice law. She faced rejection after rejection not only for
Journal of Health and Human Experience Volume V, No. 1 155 Reviews discriminatory and sexist reasons but by potential employers who were ignorant and arrogant as well: “Women are too emotional.” “We hired a woman last year, . . . what would we want with another one?” “When will you have another baby?” “Other wives will get jealous.”
After facing the humiliation, pain and anger of repeatedly being denied the opportunity to practice law despite being well qualified to do so, Ruth is offered a teaching position at Rutgers School of Law in 1963. This occurs after a black man, Clyde Ferguson, leaves the position, and it is decided that a woman should succeed him. Eight years later (1971), Marty presents to her a case that catapults his wife onto the national, and eventually the international stage. Ruth becomes a master litigator for the equal rights of women and men under the law.
In the case of Charles Moritz vs. Commissioner of Internal Revenue, Ruth and Marty co-represented Mr. Moritz, a bachelor in Denver, Colorado who was denied the caregiver’s tax break, although he was caring for his elderly sick mother and had to hire assistance to do so. The law, as it was written and interpreted, made the assumption that only women were nurses and caregivers, as well the fact that it was never fathomed that bachelors (or men in general) would choose to be caregivers. Consequently, the prosecution, in what it thinks is a strategic defense on their behalf, brought forth 178 laws that, at the time, clearly and intentionally discriminated against women and, inadvertantly, men as well. The counselors do so to send the message to the Judges deciding the case that although discriminatory, the social norms and cultural traditions (or rather conditionings) should be maintained and, thereby, Mr. Moritz should unequivocally be denied the right to be audacious enough and loving enough to care for his ailing mother by deviating from the prescribed male/female gender roles these laws and social and cultural practices imposed.
While the preparation for this case challenges and stretches Ruth’s potential, she, in partnership with Marty and her family, and with the support of the American Civil Liberties Union (ACLU), argues the case. It is a zeitgeist moment of her career. Utilizing the very words inscribed on the walls of Denver’s Tenth Circuit Court--“Reason is the soul of all law”--Ruth Ginsburg strategically cites 178 laws the prosecution meant for harm and instead employs them in her client’s favor. She appeals to the judges’ sense of reason and pursuit of justice. Why maintain the status quo? Why not create a new history by ruling in Mr. Moritz’s favor? Reverse the tax law that unfairly discriminates against and penalizes him for providing care to his mother?
The outcome of this landmark case launches Ruth Bader Ginsberg’s stellar half-century career as a champion for the rights of women (and men)—a career that culminates in her much-celebrated appointment in 1993 by President Bill Clinton to become the second woman Associate Justice on the United States Supreme Court.
Reflection As I viewed this film, I realized that I had to process my thoughts and feelings through the ethnic and cultural lens of being an African American woman born two years after the point of departure for On the Basis of Sex, the year Justice Ginsburg entered Harvard Law School. I reflected on the long history of egregious acts of racial discrimination and evils against us as a people. As the first scene rolled before me with just “1956” written on the screen, I saw and heard the buzzing and excitement of the new and returning students moving about in in Harvard’s halls. I could not help but scan the sea of faces, hoping that some would look like me.
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Not surprisingly, there were none. Given the racist realities of those times—and sadly now-- I had to engage with the film and with Justice Ginsberg from a loftier place. That is a place within me this society with its centuries old pervasive and pathological divisions, isms and schisms would not otherwise allow. Hence, I too had to hear the transcendent call that recognizes the equality inherent in all humanity. I watched the film knowing that as Chief Justice Ginsburg engaged in fighting for gender equality, the universal principle that justified all her actions, assured that the fight was also for racial equality and all other equalities necessary to affirm our right and innate need to be.
The film clearly portrays Justice Ginsburg’s courage and clarity of purpose. She stood not alone in her quest for gender equality for there were many before her who helped paved the way. Many women gave their voices, bodies, blood, and their very lives over the centuries to the cause of equality. Their resounding cry can be summed up in the unrelenting appeal of womanist Sojourner Truth who asked the poignant question at a Women’s Rights Convention in 1851, “Ain’t I a woman?” A woman, indeed! A woman worthy of being viewed equally and treated with dignity and respect as all our brothers should as well be treated with dignity and respect.
As an African American woman witnessing this docudrama about the law career of Chief Justice Ginsberg, I was reminded that the human spirit never ceases to champion the cause for that which it knows is right. Despite our long and arduous history of failing to realize the tenets of the lofty worded Declaration of Independence, there is still something within us that will not succumb to injustice and inequality without a fight. It is a fight we take on no matter the odds. This spirited push for justice and equality is exactly what On the Basis of Sex conveys about Chief Justice Ruth Bader Ginsburg. As we watch this cinematic presentation about her legal career and life, may we, too, heed the message. She masterfully and sincerely appealed to the soul of the justices in the Denver Tenth Circuit Court to create a history that acknowledges and celebrates our equality rather than continuing a bankrupt tradition and ill-conceived social conditioning that perpetuates a history of injustice to us all. May we follow her example and, in the spirit of Woodstock, make beautiful music together as we join forces to advocate freedom for us all. Justice Ginsburg did!
Justice Ruth Bader Ginsburg (center), with Justices Sonia Sotomayor (l) and Elena Kagan (r).
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Film Review
“Boy Erased”
Directed by Joel Edgerton (2018)
Hugh A. Taylor, MFA Alumnus, Maryland Institute College of Art Ellicott City, Maryland Tel: (410) 245-2296 Email: [email protected]
Editor’s Note Among many remembrances, this year also marks the 50th anniversary of the Stonewall Rebellion. On June 28, 1969, a horrific police raid took place at the Stonewall Inn, a gay bar in New York City. The horrors of that night led to massive uprisings and the birth of the gay liberation movement. The community rose up to resist the hate and discrimination they knew --- an experience that sadly still continues in our own times toward many including LGBTQ+ persons. In the memory of Stonewall, the film review to follow is most timely. It is our hope that it can inspire us to rise up always and fight against any and all types of bigotry that ultimately destroy our very nature as human beings.
Author Note The insights or views expressed in this review are those of the author. They do not reflect official policy of any of the institutions the author serves. The author has no conflicts of interest.
Introduction Throughout the history of our nation, there have been a great many moments of achievement in which we as citizens take pride. Included among these are monumental occasions that will celebrate 50th anniversaries this year, such as the Woodstock Festival or the Apollo 11 landing on the moon – accomplishments that inspire not only national pride, but pride in the advancement and enlightenment of humanity as a whole. The world indeed is a better place for having known such experiences and moments. But these moments of joy, of love and light, of music and awestruck wonder, are only one side of the coin. The darker side, a stained side that casts a shadow on our humanity, is what is explored in Boy Erased (2018).
Based upon the memoir by Garrard Conley, Boy Erased is a soulful and heart-wrenching look into the life of a young gay man who is put into a conversion therapy center by his mother
158 Volume V, No. 1 Journal of Health and Human Experience Reviews and father. Starring Lucas Hedges, Nicole Kidman, and Russell Crowe, and directed by Joel Edgerton, the film tells the harrowing story of the kind of persecution and prejudice LGBTQ+ persons have faced and continue to face at the hands of community leaders and family members throughout the nation.
Edgerton continues to shine in this directorial effort. While the cinematography is nothing revolutionary, to be expected from an actor-turned-director in his second outing, Edgerton manages to encourage and bolster incredible performances from his cast, and he allows these performances to tell the story front-and-center. Each cast member excels in this supremely genuine glimpse into the tragedy of conversion centers.
Summary At the center of the film is Jared (Hedges), the young man who is struggling with his budding sexual identity. The movie makes use of a non-linear narrative style, intercutting Jared’s experiences in the conversion center with those of his high school and college days. Jared’s father (Crowe) is an Arkansas pastor who deals in fiery rhetoric, and his mother (Kidman) is likewise a devout Christian. Jared is shown to be the object of their affections – after a game of basketball in which Jared rides the bench, his father tells him how proud he is and hands him the keys to a car. We see Jared’s idyllic small-town life as he and his girlfriend prepare to leave for college, but we also see that Jared is not quite comfortable with the sexual advances made by his high school sweetheart.
After arriving at college, Jared quickly makes a new friend in Henry (Joe Alwyn). The two bond over a shared love of athleticism, but Jared’s curiosity soon becomes obvious. In an incredibly harrowing scene, Henry assaults Jared, leading him to leave school for a few days. When he returns home, a phone call from a suspicious Henry outs Jared to his father. This proves to be the catalyst for Jared’s commitment to the “Love in Action” conversion center.
The opening scene in the center is clinical and starkly controlled, reminiscent of a prison or a day-camp version of Auschwitz. When Jared reads the rules of the center from the guidebook provided to him, the rules seep into every miniscule aspect of life. Body language is to be regulated with precision, contact with other patients is strictly forbidden “apart from a brief handshake”, and posture is engineered to display masculinity or femininity rather than comfort. All reading material and films are forbidden, and creativity is oppressively stifled. Through these group therapy sessions Jared meets several other young men and women questioning their sexuality, which introduces us to the level of self-hatred and indoctrination that is encouraged in this environment. One young man salutes instead of hand-shaking, aiming to make absolutely zero contact with other people’s bodies. From this young man, and from a confrontation with head counselor Victor Sykes (Joel Edgerton), Jared learns that he could end up involuntarily committed to the center if Sykes decides to do so.
The true horrors of the center are revealed when one of the young men refuses to call his gay feelings sinful. After Sykes shouts at him mercilessly, the entire center bears witness to a biblical attempt at an exorcism encouraged by the boy’s family. Onlookers take turns beating the boy with a bible, and then follow as he is taken to a bathtub and submerged. Soon after, the victimized boy returns to a therapy session claiming to be renewed.
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The climax of the film takes place when Jared’s time to confess to the therapy group has come. As he attempts to do what is demanded of him and ask God to forgive his so-called “sinful thoughts,” Sykes confronts him. He demands Jared confess to having been sexually assaulted by Ricky, which Jared refuses to do. The escalated shouting match that ensues culminates in Jared running from the room and calling his mother to help him escape the center. He is aided in this endeavor by the exorcized boy, who escorts Jared from the room.
Afterwards, Jared’s mother admits that she has realized the error and the danger inherent in the center’s message, and she helps him to leave. She tells Jared that she will not allow his father to send him back to the center. Upon Jared’s return home, the police arrive to inform him that the boy who helped him leave has committed suicide.
The film ends with an epilogue four years after these events where we see Jared writing for the New York Times and happily living with his partner in the city. He returns home after finding out that his father will not read his article about the “Love in Action” conversion center; and the two have a powerful conversation in which Jared and his father attempt to reconcile their differences, which ends the film on an optimistic, hopeful note.
Reflection “At the completion of this film, 36 states still legally allow conversion therapy to be practiced on minors.”
These words appear on screen before the credits begin to roll. In light of the upcoming 50th anniversary of Woodstock, the implication of this one single sentence becomes harrowing. Fifty years after this historic festival and the inspired beauty of a movement emboldening personal expression and sexual liberation for all, conversion centers akin to “Love in Action” continue to exist --- and even to be encouraged as a form of treatment for what is by many falsely perceived as an illness.
Despite the lack of an auteur’s touch in the cinematography, Joel Edgerton has in this film told a powerful and compelling story through the performances of his cast. Viewers truly suffer alongside Jared and the band of misfits surrounding him, tormented as they are by an oppressive and nonunderstanding culture. Yet the cruel atmosphere that suffocates the actors is a mere facsimile of a suffering that is inflicted upon young LGBTQ+ persons daily throughout this country and throughout the world.
While the film ends on a hopeful note, the continued existence of and support for these centers reminds us that tragedy continues to exist here in the land of Woodstock, of those three days in August of 1969 when music, love, and freedom became the mantra of the nation. As we look back and celebrate a half-century since that empowering summer of love, it becomes imperative that we remember the rigid stain of pseudo-fascism that still resides in the greater part of our country. Thirty-six states in our Union still legally allow for the practice of conversion therapy on minors. This is the atonal harshness beneath the harmony.
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However, the hopeful nature of the film’s conclusion should also inspire that same hope in all viewers. A pervasive theme of this film is that of reconciliation, as throughout Jared struggles to reconcile his faith and his love for his family with his sexuality and his own personality. During his shouting match with Sykes, Jared refuses to say that he hates his father, despite the fact that his father is responsible for sending him to the center. When Jared and his father take the first steps towards reconciliation and understanding in the final scene, we should see an aspiring ideal. Jared’s father, who championed the conversion center at the start of Jared’s journey, by the end promises he will be the one to attempt a change. They part on amicable terms, with the understanding that more good is to follow.
It is the hope of the film, and of the truth in the story itself, to imbue this compassionate spirit within all who see it, and to inspire us to continue along the road of acceptance and empowerment we started on so many years ago. Edgerton has done a magnificent job of translating this message, speaking both to the harsh and unnerving truth of the present as well as to the optimism and reassurance of a future based not on oppression but on freedom. Photo by Seth Goldstein LGBTQ Anti-Discrimination March in Philadelphia, PA, February 2017.
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UNDER CITY LIGHTS
Under CityReviews Lights
A Poem
The Ocean
Bruce R. Boynton, MD, MPH Editor, Journal of Health and Human Experience Chief Medical Officer, CorrHealth, Ltd Santa Fe, New Mexico Tel: (858) 729-3220 Email: [email protected]
Opening Reflection
One of the amazing experiences of life itself is the way in which we, as we grow and evolve, are thrust forward into things previously unknown and very unexpected. From the moment we leave the womb, the journey never ends --- a journey that sees us catapulted into vistas and horizons over which we have no control. This is the way we learn about the world and about others we come to meet. And this experience is captured for us in a variety of ways and symbols, one of which is the ocean.
As we grow and develop, we learn so much about oceans and oceanic life in our science classes. We dissect the biology of it all for sure. And we should. But there is yet something more that happens to us when we stand at an ocean’s edge. There is something that beckons us to a deeper sense of water’s meaning than just its elements and molecules.
Over the course of my career, I have known well the experience of looking into the oceans all across the globe and studying their importance in myriad ways. But when I have been at the water’s edge in all kinds of weather, it always feels like my whole self is looking, touching, diving, and plunging into things I never knew. Small wonder that artists work to capture the richness and depths of the oceans in vast and expansively rich ways. For in their artistic works, they invite us to remember that we not only are called to study the waters – but to plunge into meaning itself --- the meaning of Life --- the meaning of who we are. who we might dare to become, and what we might do to enrich our own lives as well as the lives of others that we meet in the course of our days.
The plunge continues. And it should. For that is how we come to “know the new!”
Journal of Health and Human Experience Volume V, No. 1 165 ReviewsUnder City Lights
The Ocean
When I stand at land’s end and gaze out upon the seas I wonder at their vast extent; the profundity of their depths in the Marianas; the equator that transects them as it girds the earth and the meridians of longitude that stretch from pole to pole; the salubrious warmth of the Gulf Stream and the stagnation of the Sargasso Sea; their composition as two parts hydrogen and one part oxygen; the property of water as a solvent and the enormity of salts dissolved therein; the sea’s bounty that provides food for the world; their inspiration to artists and poets; their shifting colors from aqua marine to turquoise to navy; the pull of the moon upon the waters of the earth and the resulting tides; the flotsam and jetsam and sea wrack and ruin they daily deposit upon the beaches of the world; the winds and waves and storms at sea; the abundance of treasure within the sea and the shipwrecks and sturdy souls its waters entomb; the soothing properties of sea water and its similarity to human blood and human tears; the origin of life within the sea and its profusion of plankton, sessile animals, sea fans, sponges and anemones, various species of fish and great marine mammals; its role as a great highway for human commerce and an arena for human conflict; the toils of those who go down to the sea in ships; the dangers they face and the families they leave behind. All these things fill my mind.
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Author Note
The author is solely responsible for the contents of this vignette. The contents do not necessarily reflect the position of the organizations and communities that he serves. The author has no financial conflicts of interest. This poem was originally published in the anthology, On Viewless Wings III, in 2010 (Ron Wiseman, ed. Queensland, Australia: Bower Bird Press.), but was written in 2007 when the author became very ill while commanding a hospital ship on a humanitarian mission. The occasion upon which this poem was originally authored promotes the call to newness that is at the heart of this edition. An individual’s life experience propelled him into a new exploration of the self. And from that exploration, poetry was born in him. This points to the nature of poetry itself, namely the experience of being catapulted into the unforeseen, and the importance of that experience for the discovery of new talents and gifts.
Journal of Health and Human Experience Volume V, No. 1 167 ReviewsUnder City Lights
Vignette
A Ride to School
Brenda S. Lamkin, MEd, CA Executive Director West Virginia Parent Training Center 99 Edmiston Way, Suite 101 Buckhannon, WV 26201 Tel: (304) 918-8220 Email: [email protected]
Opening Reflection
It’s almost 10:00 AM in the West Virginia Parent Training Center office (WVPTI), and the phone is ringing. Parent Training Centers throughout the United States are federally funded projects designed to support parents and families of children with disabilities. The Parent Training Center is staffed with parent engagement specialists. In one region of the state, a specialist is training parents on their rights, and the rights of their children, to request evaluations for suspected disabilities. In another region, a specialist is training a single parent who was forced to resign her job, because of numerous calls from the school to pick up her son, who had autism and behavior problems. Her job was her only source of income.
A typical family wakes up each day and gets their children ready for school. Many families start their days with little stress; however, families of children with disabilities do not find mornings so routine. These children often have difficulty transitioning from one activity to another. It can be difficult to determine what triggers will affect the children, thus causing behavior issues. Children with disabilities frequently find challenges at school, including learning deficits, limited social interactions, and bullying. These students are at the mercy of the school system. Many lack the ability to communicate about their school and peer experiences. More often than not, teachers and aides are not be certified or trained in the children’s areas of disability. A large number of substitute teachers find themselves in classrooms without support or training for their students with special needs.
Children with disabilities have a right to public education but obtaining it is often a struggle. Parents and families reach out to us when things are not going well for their children. When we get a call or e-mail, we know that parents are searching for information and support to make things better for their children. Parents trust other parents who have been through the same process. WVPTI staff members are parents/family members of children who have educational or medical special needs. Families are referred to us by family doctors, specialists, therapists, psychologists, teachers, and other parents. Most children have an Individual Educational Plan (IEP), 504 Plan or Health Care Plan that is written to meet their special needs. The IEP is a legal blueprint that designates the services that have been determined to support children in the least restrictive environment.
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As the Executive Director, I have worked for more than fifteen years with families of children with disabilities. It has been an eye-opening experience to me. I worked with one family who had a six-year-old child in kindergarten. This child was diagnosed with a developmental delay, a physical disability and asthma. To catch the school bus, he was required to walk up a steep hill every day. The little boy had a leg-length discrepancy and the thought of him struggling to breathe while dragging his little leg up a snow-covered hill, was both shocking and heartbreaking. The parents requested transportation from their house but got no reply from the school district. Transportation is a service that is listed under the Individuals with Disabilities Education Act (IDEA) for students with IEPs. In the interim, I discovered that the county school bus picked up the star quarterback of the high-school football team who lived next door. Although parents are mandated to be equal partners on IEP teams, this mother had been excluded from discussion by the IEP team and excluded from actively advocating for her child. However, we were told they would discuss the issue and let her know the district’s decision after the Christmas break.
Attending this meeting with the family proved to be a needed support. The school district came prepared to say ‘no’ to the family’s request for transportation …and they DID say NO. They lined the table with teachers, the transportation director, and a school nurse. I sat on the other side of the table beside the mother and the little boy. The transportation director started the discussion, “There is no room to send a bus to pick up this little boy.” The little boy was sitting close to me looking wide-eyed and frightened by the rising level of voices. I could hear the mother choking back tears, and she put her arm around her son. To get the meeting on track, I pointed out that there were buses that were already picking up students, who lived next door. The mother provided the medical doctor's recommendations that the little boy should not be walking uphill with his physical disability, or walking in cold weather because of his asthma. nd the school nurse concurred with the doctor’s recommendation. The county’s special education director then announced, “This meeting is over.” She stated that the team would meet privately and consider the matter further. The mother would be given their decision when school convened after the holiday break. This itself was a violation of special education regulations because parents are mandated to be equal members of the IEP team and are allowed to give input. With that, I asked that the team not only consider the recommendations that were brought to the meeting, but also the age and the individual needs of this child. We were only requesting that this little boy be provided reliable transportation to school to ensure the accommodations that were written into the IEP.
The holiday break seemed to fly by and we heard nothing from the IEP team. I kept thinking about the frightened face of the little boy and the tears on the cheek of his mother. Two days before school was to restart the mother called. “Brenda, I’m nervous; I haven’t heard from anybody. School will be starting in a couple of days and it’s snowing here. I don’t think Sammy can make it up the hill. Even when his dad holds his hand, he can’t do it. Am I going to be in trouble for truancy?” I told her that if the school denied our request for the bus, we would reconvene the IEP team and ask that the accommodations reflect the doctor’s recommendation. If we did not do this the mother could be charged with truancy and fined. At around nine o’clock the night before the children were to return to school the mother called. She was out of breath and first apologized for calling so late. She had just hung-up after a call from the transportation director telling her the bus would pick up her son at their house the following morning at 7:45 am.
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We both shared happy tears that this struggle had been met head-on and for this night and the beginning of the new year, all was calm and bright.
Author Note The author is solely responsible for the contents of this vignette. The contents do not necessarily reflect the position of the organizations and communities that she serves. The author has no financial conflicts of interest.
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A Poem
Self Arrest
Ann Leigh Lucart, PhD Retired Clinical Psychologist United States Navy (ret) Tel: (703) 772-9204 Email: [email protected]
Sometimes, My deepest places heave Like sudden waves And all my knotted kite strings Break again, Snapping open old wounds.
And in this loneliest hour I reach for the you I cannot have And draw back lonelier still, Holding emptiness Like ice in the open hand - Melting me further away.
I fall from stars And wonder why the falling. I hold my own hand to remember your touch. There is no risk in my love Because I do not have yours. And in the freezing of the fire I find my deepest age.
Journal of Health and Human Experience Volume V, No. 1 171 ReviewsUnder City Lights
Upon Reflection…..
ThisAll our poem experiences was written havemany yearsthe potential ago while toconfronting teach. They the realityhold theof an value unrequited of sharpening the lovelens scenario through and which recognizing we view that life. my heart Being was courageously on the brink of present a painful and emotional tuned -descent.in to the self in theIn winterhard instancesmountaineering of lif e'sthere pain is a termand sorrowthat is used eventually to describe leads the method to growth, of saving compassion, oneself liberation,during a andfall/slide the abilityon a steep to icymove, snowfield. pivot, To and catch leap oneself, more the wisel climbery in forcefully the future. swings The the ice 'freezingaxe into of the the snow fire' or could ice to slownot have and hopefully been possible stop the without fall. This a maneuver previous is bleedingcalled 'self heartbreak,arrest'. justLife as 'findingis full of potentialmy deepest falls. age'Some was can onlybe averted; possible and others,because not. of At it. this vulnerable moment in my life, I pulled out my ice axe.
All our experiences have the potential to teach. They hold the value of sharpening the lens through which we view life. Being courageously present and tuned-in to the self in the hard instances of life's pain and sorrow eventuallyAuthor leads toNote growth, compassion, liberation, and the
ability to move, pivot, and leap more wisely in the future. The 'freezing of the fire' could not Thehave insights been possible and views without expressed a previous in bleedingthis poem heartbreak, and reflection just as 'finding are those my deepest of the age'author. was Theyonly do possible not reflect because official of it. policy or the position of agencies, institutions or affiliations the author has served. The author is the copyright owner. The author has no financial conflicts of interest. Author Note The insights and views expressed in this poem and reflection are those of the author. They do not reflect official(Insert Picture policy or the position1 here with caption below.) of agencies, institutions or affiliations the author has served. The author is the copyright owner. The author has no financial conflicts of interest.
The172 above Volume photo V, No. is 1 in the public domain. The original Journal is found of Health at: and Human Experience https://www.dreamstime.com/mountainous -landforms-sky-mountain-winter-public- domain-image-free-101263422
Under CityReviews Lights
Upon Reflection
Ageing in a Timeless World
Michele Savaunah Zirkle, MA, PhD 1304 Forsyth Lane Galena, Ohio 43021 Tel: (614) 270-8436 E-mail: [email protected]
It’s just digits. That’s what my sister told me when she purchased the land for her house, but digits add up to more than a down payment when the topic is one’s ageing body. As our age increases so can our perceived lack — lack of opportunities for joyfulness, vitality or for challenging careers which stimulate our creativity. However, youthful abundance can be just a thought away.
Like ageing which occurs a wrinkle at a time, abundance accumulates gradually. Every area of life flourishes when we contribute daily, even hourly, to our gratitude jar. This jar can be a literal depository of blessings written on colorful paper strips or a figurative file stored in our minds. As long as regular contributions are made, the bank of prosperity increases, filling our environment with positivity and plumping our wrinkles with playfulness.
Gratitude is the most potent anti-aging supplement on which a feeble soul can feast. Gratitude is wisdom on steroids.
Grateful I am indeed. I recently held my first grandbaby. I became a grandma to a beautiful baby boy and turned fifty within weeks of each other which inspired me to tune in to how I felt about ageing. I realized that it’s not how I feel about getting older that disturbs me, but rather the negative social stigma that emanates from the silver screen in Hollywood and trickles into the neighborhood coffee shop that has me looking a little closer at the lines in my forehead and trimming the hair in my ears.
Granted, I don’t want hairy ears, but I also refuse to conform to a depressing image of ageing due to social conditioning. I will not acquiesce to a conjured image of a limping, gray- haired granny wearing elastic-waisted pants and downing laxatives and medication for an overactive bladder. I will not complain about a bit of stiffness in the morning and give credence to the notion that I’m not only supposed to experience the stiffness, but to verbalize the injustice and inconvenience of ageing.
In my fifty years, I’ve acquired some wisdom in how to nurture my body by feeding my mind and my soul with gratitude.
I may not be ageless according to society’s standards, but I’m old enough and wise enough to not care what others’ standards are, how others judge me or assess my worth. I create my own rubric for approval. Self-approval may be the key to the door of endless; hence ageless opportunities.
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Every day I get older, not just every year, but I don’t remind myself of that every morning. I just brush my teeth and smile into my slightly different image in the mirror. I feel better than I did at twenty, so maybe changing my age should be as simple as changing my phone number. The number is irrelevant until time to collect social security or get a free pastry at Panera. It’s how I feel that matters.
This attitude allows me to experience the best of both worlds. I’m old enough to find shelter from the rain, but wise enough to know that feeling the rain on my face can be a sensory pleasure I don’t want to miss. I’m old enough to not get carded when buying my favorite cabernet, and wise enough to sip it slowly — enjoying the subtle notes on my palette.
Despairing attitudes and lack of gratitude about the blessing of wisdom each year leads to unhealthy ageing. Lack of gratitude creates a lack of energy and forms a pattern of habitual resistance to life. By complaining and buying into the idea that ageing requires a stiff, cranky disposition, a person stokes the fires of the death they fear the most.
I’m not suggesting that dabbing on collagen cream is a futile act, but I am suggesting that smoothing on the gratitude cream creates a youthful glow only wisdom can provide — and that by acknowledging the timelessness of the essence many refer to as “soul,” we can gain the maximum enjoyment from the moments in which we find ourselves. An ounce of gratitude is the blissful equivalent of a mega injection of Botox.
If I gripe about time moving forward, I would create hostile conditions within — an internal torture chamber, knowing I can’t stay in this physical form forever, but wanting to. I’d be less healthy, less vibrant by failing to embrace the timelessness of my being.
Sure, I take care of my body. I work out. I eat clean. But I value my inner landscape just as much as the flexibility I get from yoga.
Abundance begins in the brain. Abundance is an accumulation of wisdom — wisdom that’s found by feeling gratitude for all aspects of life’s journey, not just the shiny smiling times, but those darker moments in which we must polish the jewel of wisdom with our joyful intent if we are to see the gift. It is these tallies that mark our experiences in the eternal flow of our existence, rather than the tally of stretch marks, that ultimately count towards our happiness.
I often truly forget how old I am. It’s not a lack of memory skills, but rather a skill for knowing what counts — and that is not how many candles are on my cake, but the thrill I get from making wishes when blowing them out.
Not knowing my age may give the impression that I am out of touch with reality when really it’s just that my reality includes a different concept of time than the traditional birthday candle-blowing folks.
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So, while you decide what to be grateful for as you finish reading this, I will open the gift from my mom — new luggage which I will pack for a road trip to my girlfriends, knowing the ageless gift of time is in the journey, not in a box — and gloriously eat my gluten-free carrot cake.
Ah, the annual birthday thing does have its advantages.
Author Note The author is solely responsible for the contents of this vignette. The contents do not necessarily reflect the position of the organizations and communities that he serves. The author has no financial conflicts of interest. Photo by Heinrich und Friedl Winter
Journal of Health and Human Experience Volume V, No. 1 175 Henry M. Jackson Foundation Special Military Health Film Series Continues… The new YouTube series on military medicine and healthcare continues to be produced and directed by the Henry M. Jackson Foundation for the Advancement of Military Medicine. Information for the first two short episodes that have been completed thus far is found below.
These episodes are immensely powerful. They demonstrate how military medicine/healthcare enriches healthcare for all people across the globe.
For more information or for submitting suggestions regarding future topics, please contact the Creative Design Department at HJF c/o (240) 694-2000.
2018 Heroes of Military Medicine Ambassador Award The Air Force’s 99th Medical Group was awarded the Hero of Military Medicine Ambassador Award for its heroic response to the October 2017 Las Vegas mass casualty shooting. Web Address: https://www.youtube.com/watch?v=9O7sL5WPPV0
The Veterans Metrics Initiatives TVMI—The Veterans Metrics Initiatives is a novel public-private collaboration that unites multi-disciplinary research experts from the Departments of Defense and Veterans Affairs, academic medicine and social science, and industry to develop an evidence-based Web Address: https://www.youtube.com/watch?v=U2PP1QqFFSM In Memory of a True Healer who dedicated his life as a physician to healthcare as human care.
Dr. L. Edward Antosek Captain (ret), Medical Corps, United States Navy 1947-2018 The Semper Vi Foundation A 501(c)(3) public charity