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Journal of Health and Human Experience Volume II, Number 1

Spring 2016

Science and Ethics

Journal of Health and Human Experience

Cover image: Félix Parra (1845 - 1919) Galileo Demonstrating the New Astronomical Theories at the University of Padua

The Journal of Health and Human Experience is published by The Semper Vi Foundation.

Journal of Health and Human Experience

Volume I, No. 2

Journal of Health and Human Experience Preface 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).

Correspondence Manuscripts are to be submitted to the Journal Leadership. Submission of a manuscript is considered to be a representation that it is not copyrighted, previously published, or concurrently under consideration for publishing by any other entity in print or electronic form. Contact the Journal Leadership for specific information for authors, templates, and new material. The preferred communication route is through email at [email protected].

Subscriptions, Availability and Resourcing The Journal is supported completely by free will, charitable donations. There are no subscription fees. Online copies of all editions of the Journal are freely available for download at: http://jhhe.sempervifoundation.org. To make a donation, contact: [email protected]. You will be contacted in reply as soon as possible with the necessary information. The Journal’s outreach and resourcing is overseen and directed by the volunteer expert members of the JHHE Global Outreach, Opportunities & Development (GOOD) Committee. Charitable donations are processed by several members of the committee who are social justice leaders with the ICC AIHM Community of Media, PA. The Journal leadership and its readers give special thanks to the AIHM volunteers whose charitable dedication of time and effort is central to the Journal’s successful international impact.

Journal of Health and Human Experience Preface 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. 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 that was created by members of the Journal leadership beginning in 2006 with their service for another publication. 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].

Copyright Information As a private sector publication, authors retain copyright for their articles. Authors grant to the Journal an irrevocable, paid-up, worldwide license to use for any purpose, reproduce, distribute, or modify their articles in their entirety or portions thereof. Articles prepared by employees of the US Government as part of their official duties are not copyrighted and are in the public domain. The Journal retains the right to grant permission to third party requestors for the use of individual articles provided that such usage is for educational, non-commercial purposes only. Third party grantees, however, cannot further delegate their approved usage to others etc. Third party usage must give credit to the Journal and the author(s). Opinions expressed in the Journal represent the opinions of the authors and do not reflect official policy of the institutions they may serve. Opinions in the Journal also do not reflect the opinions of the publishers or the institutions served by members of the Journal Editorial Board.

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Table of Contents Preface Mission: Semper Vi Foundation.................................................................1 Journal Editorial Board.................................................................................5 Journal Gold Patrons....................................................................................9 Author Biosketches.....................................................................................13 From the Editor-In-Chief

Discovery and Discernment: The Dynamis .................................................19 Edward F. Gabriele

New Horizons

Truth, Proof and Evidence Based Medicine.................................................25 Bruce R. Boynton, Editor

Articles & Commentaries

Prepared by Graphic Arts and Publishing Services at The Henry M. Jackson Foundation for the Advancement of Military Medicine, Inc.

Human Medical Ethics Research: Where Have We Been, Where Are We Now, Where Are We Headed?...............................................................31 De Fischler Herman The Social History of Ebola in Nigeria: A Focus on Stigma and Human Insecurity..........................................................................................40 Kelechi Johnmary Ani, Paulinus Ogbonna Obiahu Intimate Ethics: A Critique of Bioethical Consultation Methodology in Hospital Settings...........................................................................................50 Etan Kuperberg

A Conversation with Calamity: Shedding Light on the Plight of Syrian Refugees...........................................................................................74 Danielle Wofford, James Shraiky, Tod Schneider Conducting Research with Limited Resources.............................................94 Julie K. Zadinsky, Margaret Barton-Burke A Brief History of the Poorhouse in America...............................................105 Katherine L. Sparrow

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Table of Contents Preface Emerging Scholars Corner

The Effect of Eugenics and Sterilization Practices on African American Women’s Contraceptive Use in North Carolina Today................................115 Valencia Quiett Aerospace Engineering and Its Role in Human Development...................134 Tyrell Tysheen Yorke

Profiles in Courage: The Next Chapter

A Refugee’s Story.......................................................................................147 Jan Herman

The Critic’s Choice

Film Review: Concussion...........................................................................159 John Winters Book Review: Claims of Innocence............................................................163 Vaughan Caines

Under City Lights

Immersion: The Experience of Belonging...................................................169 Edward F. Gabriele

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MISSION

Mission Preface 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

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Mission Preface 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!

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JOURNAL EDITORIAL BOARD and GOLD PATRONS

Journal EditorialPreface Board Editor-in-Chief and Executive Director Edward Gabriele, MDiv, DrMin Humanities, Education, Research Ethics & Human Research Protections, Academic Theology, Organizational Development & Strategic Planning Former Ethicist to the Surgeon General of the US Navy Editor Bruce Boynton, MD, MPH, FAAP Neonatology, Correctional Health, Global Public Health State Medical Director Centurion of Mississippi Senior Associate Editor Charmagne Beckett, MD, MPH, FACP Internal Medicine, Infectious Diseases Uniformed Services University of the Health Sciences General Counsel J. Michael Slocum, JD Slocum & Boddie, PC Global Outreach, Opportunities & Development Committee Chair Cedric M. Bright, MD, FACP University of North Carolina, Chapel Hill 112th President, National Medical Association Project Managers Joseph Menna, AIHM, MEd Brandywine School District of Delaware

Senior Executive Advisors Louis Guarini, BA, MS President/CEO, L.J. Guarini and Associates, LLC

Shane Nicholas, AIHM Westat, Inc.

Anthony Panto, BA, ABA President, Panto Wealth Strategies

Thomas Bradshaw, AIHM Reading Community College (cand) Driveline Retail

Nickolas L. Rapley, MBA Department of Defense

Information Technology Computer Scientist & Webmaster Zachary Slocum, BS Higher Ed Growth

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Journal Editorial Board Preface

Journal EditorialPreface Board

Special Sections Editors Cedric M. Bright, MD, FACP Internal, Community, & Family Medicine, Health Equity University of North Carolina, Chapel Hill 112th President, National Medical Association Jan Herman, MA History Navy Medical History Department (retired)

De Fischler Herman, BS, RP, SD Healthcare Chaplaincy, Spiritual Direction Capital Caring Hospice of Washington, DC

Associate Editors Yolanda Amerson, MSW, LSW, PsyD (cand) Social Work, Psychology, Human Development & Humanities Huntington Disease Society of America Vaughan Caines, MSc, MA in Law (UK) Forensic Science, Human Rights Law & Criminal Law Marc Geoffrey Barristers & Attorneys, Ltd Patrick DeLeon, PhD, MPH, JD Public Health Policy, Psychological Health Uniformed Services University of the Health Sciences Exnevia Gomo, PhD Immunology, HIV, Research Administration University of Zimbabwe College of Health Sciences Elizabeth Holmes, PhD, ABPP Psychology, Ethics, Leadership Science Stockdale Center for Ethical Leadership United States Naval Academy Ibrahim Abdel-Messih Khalil, MD, MPH Global Health, Enterology, Infectious Diseases University of Washington

Ruth Perot, MAT Education, Integrated/Holistic Health Social Justice, Human Rights Summit Health Institute for Research & Education Clydette Powell, MD, MPH, FAAP Pediatrics, Neurology, Global Public Health & Human Rights George Washington University School of Medicine & Health Sciences Dale Smith, PhD Medical History Uniformed Services University of the Health Sciences Lorenzo York, MDiv, DMin Pastoral Care & Counseling, Non-Profits, Business & Strategic Planning, Project Management Department of the Navy Julie Zadinsky, PhD, RN Pediatric Nursing, Research Ethics, Education Research, Qualitative Research Augusta University

Mildred Huff Ofosu, PhD Biological Sciences, Immunogenetics, Sponsored Research Morgan State University

Academic Review Editorial Committee Chair Thomas J. Roberts, MPA, EdD Educational Leadership, Higher Education Administration, Public Administration Florida Gulf Coast University Members Shaun Baker, PhD, MA Philosophy, Ethics United States Naval Academy Ben J. Balough, MD Otology, Neurotology The Permanente Medical Group of Sacramento, California Cedric M. Bright, MD, FACP Internal, Community, & Family Medicine, Health Equity University of North Carolina, Chapel Hill 112th President, National Medical Association Donna Burge, PhD, BC-APRN, CNS Orthopedic Surgery and Psychiatric Nursing USN Nurse Corps Reserves Bruce A. Cohen, MD, MPH Family Practice, Occupational Medicine, Undersea/Hyperbaric Medicine, Global Public Health Old Dominion University Federal Bureau of Investigation Jayasri Majumdar Hart, MFA Cinema/Radio Production/Direction, Humanities, Crosscultural Affairs Hartfilms, Inc. Jan Herman, MA History Navy Medical History Department (retired) Gordon K. Jones, DDS, MS Dentistry Lovell Federal Health Care Center

Deborah J. Kenny, PhD, RN, FAAN Women Veterans, Nursing Research, Qualitative Research Interpretive Phenomenology Beth El College of Nursing and Health Sciences Frederick Luthardt, MA, MA Bioethics, Research Ethics, Human Research Protections Johns Hopkins University Charles MacKay, PhD Philosophy, Research Protections Independent Health Care Consultancy Sharon McCarl, MBA, CRA Finance, Business Administration Carnegie Mellon University Victoria Molfese, PhD Developmental Psychology; Child, Youth & Family Studies University of Nebraska Lincoln James C. Rapley, MD, FAPA Psychiatry, Mental Health Department of Defense Nickolas L. Rapley, MBA Business Administration, Strategic Planning, Leadership Department of Defense Bruce Steinert, PhD, CCRA Pathology, Biochemistry, Clinical Trials Cancer Treatment Centers of America Sandra Titus, MS, PhD, RN Sociology, Psychology, Research Methodology & Integrity Department of Health and Human Services John Winters, PhD Health, Leisure & Human Performance Bacone College

Patricia Watts Kelley, MS, PhD, RN, FNP, GNP Family & Gerontological Nursing Science Duquesne University

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Journal Editorial Board Preface

Special Gold Patrons Preface Special Gold Patrons 2016-2017

Manuscript Editing Committee Chair Linda Youngman, MS, PhD Biochemistry, Epidemiology, Clinical Trials SAMHSA, Department of Health and Human Services Members Pamela B. Berkowsky, MALD International Affairs, Government & Non-Profit Administration Blue Sapphire Strategies Jere M. Boyer, PhD, CIM, CIP, CCRP D(ABB, Microbiol) Clinical Microbiology, Molecular Biology & Immunology, Infectious Diseases, Tropical Medicine Clinical Research Management, Inc. Dee Dee Chavers, MSM Management Science Department of Veterans Affairs Darlene Gilson, BA, CTESL English Literature, Language Education Carleton University Joseph L. Malone, MD Infectious Diseases, Internal Medicine, Tropical & Travel Medicine Uniformed Services University of the Health Sciences

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Joseph Menna, AIHM, MEd STEM Education, Humanities Brandywine School District of Delaware

We give special thanks to the following national academic leaders whose generous support and insight have guaranteed the continued presence of the Journal for the enrichment of health and humanistic scholarship.

Bryan Murphy, MBA, PE Environmental Engineering United States Fleet Forces Command

Susan Arjmand

Shirley Godwin

Lisa Osborne

Pamela Berkowsky

De & Jan Herman

Clydette Powell

Bruce Boynton

Sharon Sloane

Anne Marie Regan, MSOD Organizational Development and Innovation Walter Reed Military Medical Center American University

Cedric Bright

Elizabeth Holmes & John Mateczun Patricia Kelley

Jennifer Vedral-Baron

Joseph Thomas, MSSc, MSS, PhD Leadership Science and Public Policy United States Naval Academy Shelby Tudor, BA Communications, Literary Composition, Political Science Social Justice Services

George Ceremuga Annette Debisette Arnold & Sandy Farley Karen Flaherty-Oxler Mark Frankel Edward Gabriele

Anthony Kerlavage David Lash Frederick Luthardt

Sandra Titus Marianne Ward Michael Washington

James Martin

Andrew Young & John Blair

Bryan Murphy

Julie Zadinsky

Pamela Vargas, MBA Education and Research Administration Southeast Missouri State University Marianne Ward, BS, CRA Research Administration Duke University Franklin Eric Wester, MDiv, ThM, MSS Ethics, Professional Identity, Just War, and Spiritual Resilience Evangelical Lutheran Church in America

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AUTHOR BIOSKETCHES

Preface Author Biosketches Kelechi Johnmary Ani, BA, PGDE, MA is a lecturer in the Department of History and Strategic Studies, Federal University Ndufu-Alike, Ikwo. P. M. B. 1010 Abakaliki, Ebonyi State, Nigeria. His areas of research interest include peace, conflict, terrorism and security studies as well as diplomacy and African history. He has published over seventy peer-reviewed articles and book chapters internationally. He is a doctoral candidate in Peace Studies at North West University, Mafikeng, South Africa. Margaret Barton-Burke, PhD, RN, FAAN is Director, Nursing Research, Memorial SloanKettering Cancer Center. She is President, Oncology Nursing Society and Emeritus Professor, University of Missouri. She served 21 years in the Army Reserve and Massachusetts Army National Guard, being the first female Colonel in the latter. Dr. Barton-Burke is an inaugural and senior faculty member for the African Doctoral Dissertation Research Fellowships Training Workshop sponsored by African Population and Health Research Center in Kenya. 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 Mississippi. Vaughan Caines, MSc, MA in Law (UK) is a Barrister with Marc Geoffrey Barristers & Attorneys, Ltd of Bermuda. He is also a forensic scientist holding the master’s in forensic science from the University of Strathclyde. Barrister Caines has completed scientific internships in the United Kingdom and the United States. A defense lawyer and expert in human rights, he has published book reviews, and scholarly research concerning DNA identification and its importance in research ethics. Edward F. Gabriele, DrMin 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. An educator for over four decades in the humanities, he has held several senior executive positions in ethics, 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 serves as a hospice chaplain in Washington, DC. She is an ordained Spiritual Director, co-president of the board of the Rabbinic Pastor Association of ALEPH -- Alliance for Jewish Renewal Seminary, facilitator for Age-ing to Sage-ing, and a Champion of the Center for Medicine After the Holocaust. Rabbinic Pastor Herman is an artist, poet, educator, gardener, environmentalist, and bicyclist.

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Preface

Preface

Jan Herman, MA holds the Master’s in History from the University of New Hampshire where he also held 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.

Danielle Wofford, RN is an emergency medicine nurse and a PhD student at the College of Nursing and Health Innovation, Arizona State University. Her current research centers on understanding health disparities and improving health outcomes among vulnerable populations globally. Prior to ASU, Ms. Wofford served as an educator and international aid nurse in Southern Africa and Eastern Europe. While working for the Magdi Yacoub Heart Foundation in Egypt, she created delivery models and nurse education curriculum.

Etan Kuperberg, MA is a Research Assistant at the Northwell Health Division of Medical Ethics in New Hyde Park, NY where he is co-developing a quality assessment tool for clinical ethics consultants and co-authoring a new article. He is currently pursuing a second masters in Health Policy and hopes to pursue a doctorate in the near future.

Tyrell Tysheen Yorke is a graduating senior in aerospace engineering from Tuskegee University. During his time at the university, he has been a member of and served in student leadership for the Bioethics Honors Program. Upon graduation from the university, Mr. Yorke will be completing Officer Candidate School for a future career in nuclear engineering in the United States Navy.

Paulinus Ogbonna Obiahu, MBBS is a staff member of the Federal Teaching Hospital Abakaliki, Ebonyi State, Nigeria. His areas of research interest include public health, psychiatry, medical ethics and human capital development. Valencia Quiett is a first year medical student at the Brody School of Medicine at East Carolina University in Greenville, North Carolina. In 2015, she graduated with a Bachelor of Science in Public Health – Environmental Health Sciences from The Gillings School of Global Public Health at the University of North Carolina – Chapel Hill.

Julie K. Zadinsky, PhD, RN is Assistant Dean for Research and PhD Program Director in the College of Nursing at Augusta University, Augusta, GA. Dr. Zadinsky has a clinical background as a pediatric nurse. She also has held several administrative and research leadership positions in the United States Army before retiring in 2010 after 30 years of service.

Tod Schneider, MS is an international consultant and the Founder of Safe School Design. Mr. Schneider has served as a consultant, writer, storyteller, violence prevention instructor, homeless veterans’ analyst, counselor, social services agency director and police department crime prevention specialist. He has consulted to schools throughout the United States as well as Haiti on Safe, Healthy and Positive Environmental Design, and is currently working with InterSCT on addressing the Syrian refugee crisis James Shraiky, MARCH is the founder and director of InterSCT–The Interprofessional Studio for Complexity Thinking - a research-based studio that explores systematic solutions to current and complex social issues. Prior to creating InterSCT, he was a professor and the director of the healthcare initiative at Arizona State University. Currently, InterSCT is investigating projects that address Syrian refugee issues around the world, wellness concepts in Haiti, and environmental factors to combat PTSD among wounded veterans. Katharine L. Sparrow, MSW graduated from the Boston College clinical social work program and has worked in the mental health field on the South Shore and Cape Cod. She has been writing poetry for six years and was named Poet Laureate for 2015 on AllPoetry, the largest poetry-sharing forum on the internet. Her next project is to follow her passion for genealogy and obtain certification in genealogical research from Boston University. John Winters, PhD is Assistant Professor and Program Coordinator for sport management and recreation management at Bacone College in Muskogee, Oklahoma. During his academic and athletic career, he was an NCAA graduate assistant coach for men’s basketball and tennis. Today, Dr. Winters teaches ethics of sport and recreation. He is a widely respected researcher for college baseball history, especially black college baseball.

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FROM THE EDITOR-IN-CHIEF

From the Editor-in-Chief Preface Discovery and Discernment: The Dynamis 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] This calendar year of 2016 holds for us all a great number of very moving anniversaries. As such, both Journal editions this year will utilize these anniversaries to present a series of powerful explorations into the nature and challenges of holistic health and healthcare leadership in our contemporary society. Yet before delving into the specific anniversaries that underlie this present Journal edition, it is important for us to recall the nature of anniversaries and what they pose for the human experience. All of us are taught to honor and reverence the many anniversaries in our lives as individuals, family members, and citizens. As we grow and develop from childhood, almost from the beginning we are struck with the events our parents and families remember. Sometimes these memories make us wonder why they are so important. But as we mature and as events in our own lives take shape, we come to know and understand the power that is behind the occasions we come to recall with deep meaning. This gives us an important understanding as to why anniversaries are so important to the very nature of the beings we are. While remembering events is part of our family experiences and our history, there is something deeper inside us that calls us to a type of remembering that is far more expansive than the simple recall of calendar events of the past. The human person does not just “recall.” Rather, we come to a point in our lives where we “re-imagine,” “re-image,” and even “re-live” the inner meaning of the events that occur to us, to those around us, and to those before us. In this spirit, anniversaries become moments of “living memory” when, as some theological scholars have stated, the past reinterprets the present in the hope of the future. Memory then becomes a living phenomenon that impacts our understanding of self, others, and our world. And this includes the way critically important events, both positive and negative, impact our lives and our selfunderstanding. Memory is therefore not just a dynamic, but becomes itself, to use the ancient Greek, a dynamis --- that is, a type of quantum leap into completely unforeseen horizons and possibilities. It is in this spirit that this year’s Journal editions are steeped. And this first edition of 2016 is dedicated to reflecting upon the dynamis between discovery and discerment, between science and ethics. This year, a number of fascinating and powerful anniversaries come to our attention. Many scientists honor this year as the 350th anniversary of Isaac Newton’s discovery of gravity. The scientific community also honors the 100th anniversary of Albert Einstein’s discovery of relativity. Related to scientific discovery in an intriguing way, this year also finds us celebrating the 50th anniversary of the very first episode of the original Star Trek television series. Yet while Journal of Health and Human Experience

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From the Editor-in-Chief Preface

From the Editor-in-Chief Preface

these discoveries and events bring achievement and fascination to mind, this year also marks the 200th anniversary of Mary Shelley completing the draft of her renowned novel, “Frankenstein.” And of vastly grim memory, this year in December raises up the 70th anniversary of the start of the Doctors’ Trial at Nuremberg when we will recall the horrific and inhuman depths to which our history was sunk under Nazi genocide and egregiously immoral human experimentation at Auschwitz and elsewhere.

There is no question that we as human beings are beings of discovery. From the moment we leave the womb, we embark upon an immense journey wherein we come to know the world via our mouths, our fingers, our eyes, and our hearts. Sensory beings that we are, we begin our human discovery with what we have at our disposal. Gradually, as we age and mature, we come to see and discover more and more. Our brains begin to make connections and entertain newness all around us. This is the delight of what it means to be human. We are beings of discovery. Yet just as we as children must learn that unbridled quests can lead to burned fingers or broken platters, our learning also must lead us to know the limits of what we are able to do. We learn that discovery needs the careful companion that is the discernment of what is best, of what is The Good. Indeed, keeping the above anniversaries in mind, we realize full well that without discernment, the sinister realities of human greed and power can tempt us to become ourselves a new Dr. Frankenstein, or lead us to the gates of another Auschwitz. Discovery and discernment, therefore, are meant to be life-time companions. As such, their bond helps us to prevent the worst by promoting the best. But yet there is something even more wonderful that they do as a “dynamis.” They open a door to something yet Unforeseen. I wonder how that can best be captured in our imagination? Not very long ago, I came across a wonderful YouTube musical video. Similar to America’s Got Talent, the video was from a 2015 overseas musical competition. The song being sung was “You Raise Me Up” by Josh Groban. However, the performers were two absolutely gifted very young children: 10 year old Jeffrey Li and 7 year old Celine Tam. For those interested, the video is found at: https://www.youtube.com/watch?v=LxDXnM1Jd6Q. Despite my own long history in music, I was left in utter amazement, near shock, and unspeakable joy. That experience continues each and every time I look and listen again to this wonderful work. First of all, these two young children possess musical qualities that one would only expect of older individuals who have studied and performed for many years. But even more deeply than their artistic prodigiousness, their ability to embody and radiate the inner meaning and beauty of Groban’s work was breathtaking. They were able to bring pure joy as they gave life to the repeated lyrics of the work:

Obviously, each of these anniversaries bears much weight. Each on its own strikes us differently and in different ways. However, something else is present here. While respecting their individual meaning, there seems to be something among them that brings them together in a unique and important way. Indeed, I believe there is an important invitation for us all when we bring these anniversaries together into a type of memory-montage. For a long time, I allowed the montage of these anniversaries to stay before my eyes and mind. There seemed to be some powerful but hidden message that kept calling me to enter into a deep inner cave of reflection. Given my nature, I resisted the call to enter for quite a while. And then one day, I entered --- slowly and carefully. Walking into the depths and mists, I gradually came upon a type of mental slate on which my reflections seemed to see a message – a message based upon the often recalled opening words of the famous Star Trek series --- but added with a poignant caveat:

“Going where no one has gone before....but should we, and if so, how?”

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When I am down and, oh my soul, so weary; When troubles come and my heart burdened be; Then, I am still and wait here in the silence, Until you come and sit awhile with me. You raise me up, so I can stand on mountains; You raise me up, to walk on stormy seas; I am strong, when I am on your shoulders; You raise me up... To more than I can be. For some reason, every time I began to reflect upon the theme of this new edition of the Journal, this video kept coming to mind. There seemed to be something that kept drawing me into the lyrics and melodies that captured something unknown, different, and many-meaninged about the “dynamis” needed between discovery and discernment, between science and ethics. And then after many periods of reflection, it struck me powerfully. You see, the energies, the Journal of Health and Human Experience

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From the Editor-in-Chief Preface dynamics, the dynamis that are needed in the dialogue between science and ethics have as their goal to “raise us up to more than we can be.” The process of discovery and discernment, namely the dialogue of science and ethics, is not something that should be seen as a dire warning of how dangerous science is or how dour ethics can be made by dis-thinkers. Not at all. Certainly what is ethical is something that must maintain and protect the very character and meaning of being human. Ethics has its origins in the Greek, “ethos,” meaning fundamental character. And certainly science must launch us beyond our fears to know and discover all that helps the human animal to expand and grow. We realize, though, that both science and ethics avoid the worst and promote the very best when they are companions on that journey that our young friends sing of --- the Journey to become more than we can be. That Journey is always the pathway to The Good wherein every human person, every society, every living being is protected and even more greatly propelled without prejudice into a quantum leap of Unknown and Joyful Horizons that are amazingly and richly diverse. Ultimately, the brilliant lyrics that come off the lips of the science and ethics duet bring us beyond “scientia,” beyond cerebral knowledge, into something Utterly New, something known in Greek as “Sapientia,” in English “Wisdom.” As you page through this new edition of the Journal of Health and Human Experience, please know that you are being invited on a dynamic journey of diverse and varied insights and scholarship from all across the globe. Most importantly, you are being given an invitation to read, to know, to reflect, to be. It is an invitation for us individually as persons, as well as members of our diverse human communities, to consider very carefully who and what we are called to become. And as our friends Jeffrey and Celine have sung to us, may we stand on the shoulders of scholars and sages to be raised up to more than we have ever thought possible. Listen well….the song is just beginning…..

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NEW HORIZONS

New Horizons Prelude Articles Truth, Proof and Evidence Based Medicine Bruce R. Boynton, MD, MPH, FAAP Editor The Journal of Health and Human Experience Statewide Medical Director Centurion of Mississippi Jackson, MS 39201 Introduction New Horizons is a special opening academic editorial in each edition of the Journal of Health and Human Experience. In each article, our Editor presents to our readers particularly pertinent contemporary issues that address poignantly the theme of the current edition. The article that follows powerfully captures this edition’s dedication to the dialogue that is essential between ethics and science, between discovery and discernment. This edition’s editorial summarizes superbly the central concern we all have as human persons, namely our common commitment that healthcare, the healthcare sciences and all of their methodologies truly be about securing for us Our Health and Our Good.

We live in an age of pharmaceutical innovation. One cannot turn on the television set these days without seeing one or more advertisements for ingenious new drugs that can raise our spirits, ease our pain and help us to live happier and more productive lives. Such ads are often accompanied by the claim that the drug has been clinically proven. This is reassuring, but what does the phrase “clinically proven” really mean? The answer to this question is not straightforward. Regulatory agencies, such as the US Food and Drug Administration (FDA), require compelling evidence that a drug is safe and effective before licensing it for sale. Such evidence is gathered by testing new drugs against placebos in tightly controlled randomized clinical trials. A drug must not only be relatively safe but must also be substantively more effective than a placebo to merit FDA approval. Once a drug is licensed it can be said to be clinically proven. The wisdom of this approach seems so intuitive that it may surprise some to learn that the first modern clinical trial did not take place until 1948, when the British Medical Research Council demonstrated the effectiveness of streptomycin in the treatment of tuberculosis. In previous centuries there were far fewer drugs available and their efficacy was attested by folk usage rather than clinical trial. Everyone knew that willow bark, from which we get aspirin, reduced pain and fever; and foxglove, from which we get digitalis, was effective for congestive heart failure. During the 18th century physicians began to move away from empiric folk-usage and design therapies based on theory, sometimes with disastrous results. The most spectacular of these occurred during the Philadelphia yellow fever epidemic of 1793. During this epidemic that cost 5,000 lives in a few months, Benjamin Rush, signer of the Declaration of Independence, founder of American psychiatry, foremost physician of the age and a student of the now discredited

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Brunonian system of medicine, designed a program of treatment consisting of massive bloodletting and mercuric chloride purges. His colleagues were horrified, but Dr. Rush pointed gleefully to the few survivors of his treatment, thereby demonstrating that the best minds can be misled by anecdotal evidence. Incidents like this paved the way for the modern clinical trial. At this point the reader may conclude that if he or she is prescribed a clinically proven drug it is almost certainly going to work. Unfortunately, that is not always the case. As an example, one well known and very expensive drug for fibromyalgia alleviates symptoms substantially in only 7-11% of sufferers. That means 89-93% get little or no relief. How can a drug with such a track record be considered clinically proven? The solution to this conundrum lies in the very nature of the clinical trial. Physicians and other providers treat individuals; clinical trials study groups. In every clinical study some patients improve while others get worse. Nothing is certain; even the most efficacious treatments have non-responders, while even the least efficacious have some who thrive. Because individuals are so variable, the investigator is forced to focus on the outcome of the group as a whole. The central question for the investigator is this: Does the outcome of the study group differ from that of the placebo group in a way that is unlikely to have occurred by chance? If so, the treatment may eventually be considered clinically proven. Randomized clinical trials have additional weaknesses. It is difficult to establish the efficacy of treatments that work only in subgroups if those subgroups cannot be identified at the time of treatment. Such a situation occurred in the testing of monoclonal antibodies to treat Gram Negative Bacterial Sepsis. Patients with this form of sepsis could not be identified and segregated from those with other forms of sepsis at the time of treatment. Therefore the outcome of the treatment group, contaminated by those with other forms of sepsis, was not statistically different from the outcome of the control group. However, for those who did have Gram Negative Bacterial Sepsis, the treatment was lifesaving. Was this treatment efficacious? Of course it was; but it was difficult to prove.

Epistemology, that branch of philosophy that deals with knowledge and knowing, characterizes truth and belief as overlapping circles. There are things that we believe that are not true and things that are true that we do not believe. Nestled in their intersection is knowledge, those things that are both true and that we believe and, more importantly, that we are able to prove. But there are other things that are both true and believed that remain unproven. In many cases the randomized clinical trial is the best technique we have to “prove” new treatments. The increasing importance of clinical trials during the last years of the 20th century led to the advent of Evidence Based Medicine, a movement that has dominated western medical thinking for the past 20 years. Evidence Based Medicine attempts to base patient care on the best available medical evidence, which often consists of well conducted, randomized clinical trials. Publications are critiqued and assigned levels of evidence depending on whether they are expert opinion, case reports, cohort studies, etc. The goal is to put medical treatment on a firm footing, an effort strangely similar to the attempt of Whitehead and Russell to do the same for mathematics. In the minds of some practitioners, Evidence Based Medicine became dogma and only treatments supported by the highest level of evidence were considered science; while treatments attested by lower levels of evidence were called “almost science, empiric science, pseudo-science, half-baked science, quackery equivalent and true quackery.” In the end wiser heads prevailed, and in 2000 David Sackett and his colleagues redefined the goals of Evidence Based Medicine as integrating the best external evidence with “individual clinical expertise, patient values and expectations.” In the healing arts, scientific proof alone is insufficient or, as Kurt Gödel might have said, it is incomplete. It is refreshing to find that the leaders in Evidence Based Medicine were the first to admit this. Human care cannot be reduced to a formal calculus, but then that is its beauty as well as its challenge.

Some traditional healing techniques, such as those used in Traditional Chinese Medicine and Ayurvedic Medicine, are difficult to “prove” because they individualize treatments, making it hard to form a cohort of subjects who have received the same treatment for the same condition. Yet the efficacy of these healing traditions is attested in detailed case reports stretching back thousands of years. The variability inherent in biologic systems has its counterpart in the physical sciences. Some quantum events, such as radioactive decay, are unpredictable except in the aggregate, and some are even claimed to be uncaused. In their essence, the laws of nature appear to be statistical rather than absolute. Although Einstein exclaimed that, “God does not play dice with the universe,” He sometimes seems to be doing just that. Despairing of finding certainty in natural systems, Bertrand Russell turned to symbolic logic. In Principia Mathematica, he and Alfred North Whitehead attempted to describe the rules and axioms from which all mathematical truths could be proven. But this too was doomed to failure. In 1931 Kurt Gödel proved that any such set of rules and axioms must be either inconsistent or there must be truths that cannot be deduced from them. In mathematics as in medicine, provability is only a subset of truth.

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ARTICLES

Articles AN OPENING CHALLENGE Human Medical Ethics Research: Where Have We Been, Where Are We Now, Where Are We Headed? De Fischler Herman, RP, SD Chaplain, Capital Caring Hospice 50 F Street, NW Suite 3300 Washington, DC 20001 USA Tel: (202) 244-8300 Fax: (202) 244-1413 E-mail: [email protected]

Author Note The content of this article was originally presented to undergraduate students of anthropology and human rights and their teacher, Assistant Professor César Abadía-Barrero, DMD, DMSc, at the University of Connecticut, November 18, 2015. The opinions expressed here are those of the author alone and do not necessarily reflect those of the Capital Caring Hospice. The author has no financial conflicts of interest.

Abstract Human medical research has made huge strides in the last 150 years, but not without great human cost. Research scientists and physicians have been subject to the prejudices and forces of their ego, era and culture. Unsuspecting people may be subject to eugenics practices in the 21st century as the Human Genome project generates new and fantastic methods of reproducing and extending human life. Promoting bioethical principles, teaching the history and consequences of medical research, and modeling compassion to researchers, scientists, medical professionals and hospice teams are imperative to guide the human species in healing from trauma. Keywords: bioethics, eugenics, genome, Guatemala, Henrietta Lacks, Hippocratic Oath, medical ethics, medical research, Nazi Germany, Nuremberg Code, sterilization laws, Tuskegee, USPHS Syphilis study

Introduction In 1907 Eddie Millard was convicted of petty larceny and sentenced to prison in Indiana. There he encountered Dr. Harry C. Sharp, a respected member of the American medical profession. Dr. Sharp proceeded to interrogate Eddie and then informed him that it would be better for society if he were sterilized. Despite Eddie’s verbal protests and actual physical struggles in the operating room, a sterilization operation was performed.

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Not only was Eddie Millard sterilized without his consent, but from 1907 to 1974 medical professionals legally and forcibly sterilized 64,000 other Americans.

established the germ theory. In the 1880’s Pasteur and other researchers developed vaccines for cholera, anthrax and rabies. Wilhelm Roentgen introduced X-rays for medical imaging in 1895.

“Those who cannot remember the past are condemned to repeat it,” wrote the philosopher George Santayana. When we do not question, study, understand, and resolve past mistakes, or when we succumb to victimization and live out our lives in debilitating fear, anger, and hatred, we are destined to inflict that trauma on succeeding generations.

Science, too, was advancing. In 1859 Charles Darwin introduced the controversial and far-reaching theory of evolution by natural selection. This theory, in conjunction with Gregor Mendel’s development of the laws of inheritance in 1886, would lead to the 20th century study of genetics, genetic engineering and the mapping of the entire human genome.

On this very soil we need look no further than Native Americans whom white Europeans have brutalized. Our government, and for many of us, our ancestors, desecrated and confiscated their tribal lands, massacred most of them, then herded and removed the rest to reservations far from their homes.

In War against the Weak, Edwin Black wrote, “Eugenics was the racist pseudoscience determined to wipe away all human beings deemed ‘unfit,’ preserving only those who conformed to a Nordic stereotype,” that is, white, blond-haired and blue-eyed. While it is often associated with Adolf Hitler and Germany’s National Socialist agenda to create a “Master Race,” the idea actually originated in Britain and the United States and developed in California, decades before Hitler came to power.

Or what of African Americans, whose ancestors suffered dehumanization, enslavement and murder at the hands of the white Europeans who colonized these shores? The fallout still reverberates across the country in our own time in places like Ferguson, Charleston, Baltimore and New York. Human medical research, bioethics, and healthcare are inextricably linked to human rights. As educated and caring members of our contemporary society, we would like to think we know better than to use our professional expertise and resources to perpetrate harm wittingly or unwittingly on unsuspecting victims. Yet humanity’s collective past and our inhumane treatment of and experimentation on others tell us a different truth. Only if we take the trouble to examine our past fully and empathize deeply with our heart can we confront, develop and appropriately employ the growing and complex technologies zooming toward us like a runaway train.

Human Medical Research: Historical Notations When and how did ethics in medical research originate? What lessons have we learned from past experiences? How can we apply these lessons to make informed, wise and ethical decisions about whether, how and when to use the medical technologies that are developing faster than our lawmakers can grasp? As for the early development of medical ethics, the Hippocratic Oath has been the ethical bedrock of the medical profession for 2,000 years. It includes the statement, “…I will, according to my ability and judgment, prescribe a regimen for the health of the sick; but I will utterly reject harm and mischief.” Moses Maimonides, preeminent Jewish philosopher and physician in the 12th century, said, “Inspire me with love for my art and for thy creatures. In the sufferer let me see only the human being.” Fast forward to the 19th century. Medicine has made great strides with the development and successful use of blood transfusions, anti-septic surgical techniques and anesthesia. In 1847 Hungarian physician Ignaz Semmelweis discovered how to prevent puerperal fever by having doctors wash their hands before delivering babies. In 1870 Louis Pasteur and Robert Koch

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In 1883, the Englishman Sir Francis Galton, Charles Darwin’s cousin, coined the term “eugenics” in his effort to apply selective breeding to the human species. The initiative may have sounded laudable at first—to improve the qualities of humans by encouraging reproduction by persons presumed to have inheritable desirable traits. This was called positive eugenics. On the flip side was “negative eugenics,” improving the qualities of humans by discouraging reproduction by those having defects or heritable undesirable traits. This is where sterilization programs originated. The mainstream American scientific community played a significant and disturbing role in these programs. Beginning in 1907 in Indiana, state legislatures enacted sterilization laws. Before the laws were overturned in the mid-1970’s 33 states had statutes under which more than 60,000 Americans endured involuntary sterilization. When the states did not vigorously employ the laws sanctioning compulsory sterilization, Harry Laughlin, DSc, from Princeton and superintendent of the Eugenics Records Office at Cold Spring Harbor, New York, drafted a “model law” in 1922. By 1924 eighteen additional states passed laws based on his model. Who were the targets of compulsory sterilization? The feeble-minded, the insane, criminals, epileptics and alcoholics, as well as persons who suffered from blindness, deafness, deformities and those who were indigent. (Note well: Sterilizations of mental patients continued into the 1970’s.) Harry Laughlin even testified before Congress in favor of sterilization laws and the need to restrict immigration of populations he considered undesirable. His evidence was scientifically unfounded and overtly racist. He and his wife had no children. Another player in the eugenics saga was Alexis Carrel, a French surgeon at the Rockefeller Institute in New York, who, in 1912, won the Nobel Prize for his blood-vessel-suturing technique and contributions to organ transplantation. In his 1935 book, Man, the Unknown, Carrel, an avowed eugenicist, claimed that implementing enforced eugenics would greatly enhance humankind and promote immortality. But immortality for whom? He wrote in the book’s preface, The German government has taken energetic measures against the propagation of the defective, the mentally diseased, and the criminal. The ideal solution would be the

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suppression of each of these individuals as soon as he has proven himself to be dangerous (Reggiani, p. 71). In the book, Carrel also wrote: The conditioning of petty criminals with the whip, or some more scientific procedure, followed by a short stay in hospital, would probably suffice to insure order. Those who have murdered, robbed while armed with automatic pistol or machine gun, kidnapped children, despoiled the poor of their savings, misled the public in important matters, should be humanely and economically disposed of in small euthanistic institutions supplied with proper gasses. A similar treatment could be advantageously applied to the insane, guilty of criminal acts (Carrel, p. 13). Carrel envisioned organ transplantation and life extension as ways to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated and nonwhite. He dreamed of never-ending life for those he deemed worthy, and death or forced sterilization for everyone else (Skloot, p. 59).

Syphilis Study at Tuskegee About the time of Carrel’s writings, the United States Public Health Service began studying the effects of untreated syphilis on African American men. We are well aware of this study, conducted on 623 mostly uneducated, poor black sharecroppers in Tuskegee, Alabama. Who were the researchers and why did they choose African American men as their subjects? It is probably no surprise that segregation, racism, socio-economic inequality, the Depression and white privilege allowed it to take place. The researchers were well-educated Caucasian men who planned to observe the infected men from 1932-1933 to gain valuable information for future syphilis treatment programs. But after that first phase, Public Health Service officials argued to extend the study indefinitely to see what else they could learn from the subjects. The syphilis study continued unabated for 40 years, long after the development of penicillin, which could have cured the sufferers. Tragically, the study subjects were never treated. Lillie Head, daughter of study victim Freddie Lee Tyson, wrote: For 40 years, while they were poked and tapped, these men never knew they had syphilis. They were never informed of the harmful effects untreated syphilis had on their physical, mental, and social health. Being deliberately uninformed by the US Public Health Service doctors was not only extremely unethical, but morally wrong and spiritually demeaning. These strong men were sacrificial lambs in a study that was needless, lacked moral judgment and respect for human dignity (Head, 2013). The men in Tuskegee were not the only sacrificial lambs in a needless, heartless and unethical research project initiated by this country’s physicians. In 1946 the U.S. Public Health Service doctors began a study in Guatemala, deliberately infecting nearly 700 prison inmates, mental patients, and soldiers with venereal diseases to test the effectiveness of penicillin. The study ended quietly in 1948, since penicillin was costly and in short supply. In 2010 Wellesley College Professor Susan Reverby outed the experiment in a research paper, prompting an investigation. Interestingly, the lead public health researcher for the Guatemala experiment, 34 Volume II, No. 1

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Dr. John Cutler, was involved later with the Tuskegee study. Dr. Mark Siegler, director of the Maclean Center for Clinical Medical Ethics at the University of Chicago’s medical school said, “It’s appalling that, at the same time as the United States was prosecuting Nazi doctors for crimes against humanity, the U.S. government was supporting research that placed human subjects at enormous risk” (MacNeil, 2010).

Nazi Germany By the mid 1930’s, anti-Semitism was on the rise in Germany. As Adolf Hitler rose to power, he embraced the concept of eugenics, promoted the idea of a German master race and set into motion what would become the greatest genocide in human history. Hitler embarked on a program of state-sponsored eugenics for “racial hygiene” that performed involuntary sterilization on 400,000 Germans, euthanized 200,000 German children with birth defects or mental retardation, adult psychiatric patients and ultimately killed more than six million Jews, gypsies, homosexuals, blacks, Poles and political opponents. The most notorious perpetrator of that Holocaust genocide was the so-called “Angel of Death” of Auschwitz, Dr. Josef Mengele. He decided who would be sent to their death in the gas chambers and crematoria. And some among those he let live became the subjects of his macabre “experiments.” He was particularly interested in identical twins, so he could use one for his subject and the other for a control.

Post World War II and the Nuremberg Code This year we commemorate the 70th anniversary of the Doctors’ Trial at Nuremberg, which led to the 1947 Nuremberg Code. The code outlines ten principles for legitimate medical research, including informed consent of the human subject, absence of coercion, properly conducted experiments and avoiding unnecessary physical and mental suffering. Although the code did not have the force of law, medical associations of many countries adopted a code of ethics. Fred Gray, the attorney who represented the plaintiffs in the lawsuit that eventually brought some compensation to the Tuskegee Syphilis Study victims wrote: It is pointless to weigh one person’s suffering against another’s, and I am not for a moment equating the Tuskegee Syphilis Study with the horrors committed in the name of “science” by Nazi doctors against Jews at Dachau and other places during World War II, but the principle is the same. The Nuremberg trials against Nazi war criminals resulted in a set of standards under which the civilized world agreed that human beings would not be used as research animals and the doctors would never forget their first duty is to heal their patients. The Tuskegee Syphilis Study reiterates the necessity for commitment to these ideals (The Tuskegee Syphilis Study, p.14). Despite the existence of the bioethical principles, a few years later in 1951, yet another human injustice began. The cancer cells of a poor black woman from Baltimore named Henrietta Lacks were taken without her knowledge, grown in the lab and have been sold ever since to researchers around the world. The HeLa cells, as they are known, have made possible advances in polio vaccine, cloning, and gene mapping. Yet this young woman died, her family was not informed for 20 years and to this day they remain in poverty, unable to afford health insurance. Henrietta Lacks’ story is a collision of ethics, race, and medicine. This leads to the

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question, “How can we prevent the worst by promoting the best of who we are and what can we do to protect the dignity and respect that is fundamental to being human?” As we commemorate the 70th anniversary of the Doctors’ Trial at Nuremberg, we ask, “What have we learned from the atrocities the Nazi doctors inflicted on their subjects? What have we learned from the syphilis studies in Tuskegee and Guatemala, the case of Henrietta Lacks and all the other unethical and immoral experiments performed on unsuspecting subjects? How can we imagine and bring about a new world, free from such horrors? And, what can we do to protect the dignity and respect that is fundamental to being human?” One way is through education. The non-profit organization, Center for Medicine after the Holocaust, seeks to challenge doctors, nurses and bioscientists to confront personally the medical ethics of the Holocaust and apply that knowledge to contemporary practice and research, while mindful of the Hippocratic Oath. It is important to teach “medicine after the Holocaust” especially now when there is a resurgence of interest in eugenics and biological determinism following the success of the Human Genome Project. Controversy swirls about abortion, pre-implantation genetic diagnosis, embryonic stem cell research, assisted suicide, euthanasia and designer babies. PayPal’s co-founder Peter Thiel, along with other young Silicon Valley billionaires like Napster co-founder Sean Parker and Google’s Sergey Brin, are investing heavily in research to defy death—through reprogramming DNA, genetically modified organisms and other tinkering with nature. Another way is to document and monitor the human research protocols through an Institutional Review Board (IRB). The Food and Drug Administration (FDA) and the Department of Health and Human Services (DHHS) empower the IRB to approve, require modifications or disapprove planned biomedical or behavioral research. While the IRB is well-intentioned, does it address and include the very people who carry out the studies? R. Kevin Mallinson, PhD associate professor of nursing at the George Mason University College of Health and Human Services, has spoken about the importance of “followers.” Many times we talk about the ‘leaders of tomorrow’ and how we must learn to lead well. Yet, the majority of professional healthcare personnel will actually be followers. They will not be designing the studies or negotiating with the Institutional Review Board…that will be the Primary Investigators (the leaders). So, how do we teach the followers to be good at their role? How do we teach them to raise their hand and question something that doesn’t seem right? All too often, nurses, medical residents and others on the team will defer to the physician, just because he or she is the attending physician. It’s important to teach students to engage in respectful, open dialogue in which questions about the treatment of individuals can be examined in the light of day. When students question those in leadership, they can do so in a professional, positive manner (Mallinson, 2012). Concluding a course on Culture, Context and Vulnerability in Nursing Practice, Dr. Mallinson took ten students on a Holocaust tour in Eastern Europe. What he learned was this: “…..that the annihilation of a people has its beginnings in the stereotyping of people”

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(Mallinson, 2012). Can it, does it, happen today? Definitely! How does he raise his students’ consciousness about it? He said, We focused on teaching our students how to counter the comments in the Emergency Room that this next patient ‘...is one of those people who doesn’t care about his/her health’ or ‘this person is just a GOMER [as in, get out of my ER]’ or ‘this person is…a frequent flyer.’ Each of these comments and others that denigrate the patient because of his/her ethnic heritage, gender, religious affiliation, sexual orientation or social status is not to be tolerated. Once we can dehumanize the individual (e.g. the homosexual, the Muslim, the Jew, the Black, the Indian), we move closer to considering them less than human...closer to deciding to exterminate the entire population. It is important that the majority of people learn how to be good followers; they need to question authority figures and expose hate and discrimination for what they are…unacceptable (Mallinson, 2012). Still another way to address the wrongs is through human-to-human apology. The syphilis study ended in 1972 and only then because Jean Heller, an Associated Press reporter, broke the story. But it would take another 25 years until 1997 when President Bill Clinton publicly apologized to five elderly survivors and family members of others with these words: The United States Government did something that was wrong—deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens…The American people are sorry—for the loss, for the years of hurt. You did nothing wrong, but you were grievously wronged. I apologize and I am sorry that this apology has been so long in coming (Gray, 2013, pp. 163-164). With that the President also announced the award of a grant to Tuskegee University to establish the National Center for Bioethics in Research and Healthcare. The Center holds an annual bioethics educational conference and reunion of the syphilis study descendants to work on healing from the trauma and restoring their lost trust. Also of note regarding another important historical atrocity, sixty-two years after the Guatemala experiment, then Secretary of State Hillary Rodham Clinton and former Health and Human Services Secretary Kathleen Sebelius apologized to the government of Guatemala and the survivors and descendants of those infected.

Conclusion Ethicists, rather than providing easy fixes for the dilemmas humanity faces, pose provocative questions with which people must struggle. Dr. Sheldon Rubenfeld, professor at Baylor Medical School in Houston and founder of the Center for Medicine After the Holocaust said: Mistreatment of those we declare “others” is a universal phenomenon. The American experience with slavery and the Tuskegee experiments show that Americans are capable of barbarism. Political and religious restraints on [the] human propensity toward barbarism are [essential and] critical. The American political system in the 20th century, which encouraged free speech and religious freedom, might permit a Tuskegee whereas a totalitarian system like National Socialism in Germany would permit and even encourage a Holocaust (Rubenfeld interview, 2012).

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The felt experience of Nazi Germany did not die with the deaths of the victims of that wellorganized, mass killing machine. Some victims lived to bear witness. What happens to those like them who survive such unspeakable trauma at the hands of other people? They could not utter their stories for decades. The collective experience penetrated the very cells of the children yet to be born to the survivors. And of the twenty million who perished, every last one, from victim to perpetrator, was a human being. The Jews, the Slavs, the people with disabilities, the gypsies, the homosexuals, none of them was sub-human. But that is how the Third Reich saw them. Although the German doctors were the best in the world, they were seduced by the power to create a master race, free from disease, disability and undesirable traits. Dr. Rubenfeld wrote, Physicians in Nazi Germany betrayed the Hippocratic Oath …when they chose knowledge over wisdom, the state over the individual, a fuhrer over God, and personal gain over professional ethics. If the best physicians of the early 20th C. could abandon their patients, can we, the best physicians of the 21st C. be certain that we will not do the same? (Rubenfeld, p.5) The Human Genome project has vast potential to bring about positive change in human health. But how will it be used by those who hold its power in their hands? What ethical boundaries have been or need to be established to protect the individual of today or the progeny of the future? How can contemporary ethicists keep up with the pace of technological advances in genomic research? How can we ensure our initiatives are effective? Which leads back to the question, “How can we prevent the worst by promoting the best of who we are and what can we do to protect the dignity and respect that is fundamental to being human?” Contemporary medical education pumps student doctors and researchers with food for the brain. We can think of the left side of the brain like a heavy child on a seesaw, leaving a much thinner cousin up in the air. What sorely needs nourishment is the right side, to bring us back into balance. What is the essence of the right side of the brain? It is creativity, generativity, the wisdom of the heart. It is being in touch with feelings, feelings that may bring us close to our own pain and suffering so that, rather than seeing people different from us as “the other,” we can empathize with them, have compassion for them, and treat them, as the Golden Rule says, the way we would want to be treated. Or, to put it another way, not to treat others the ways we do not want to be treated. We might even try the more humane approach by asking, “How do you want to be treated?”

References

Black, E. (2003). War against the weak: Eugenics and America’s campaign to create a master race. Four Walls Eight Windows, www.4w.8w.com. Carrel, Alexis, (1935). Man, the unknown, (L’Homme c’est inconnu). Harper & Brothers. Gray, Fred D. (2013). The Tuskegee syphilis study. New South Books. Head, Lillie. (2013). New sunrises shines the light on past sacrifices, essay in Voices for Our Fathers. 3(1), National Center for Bioethics Research and Health Care. MacNeil Jr., D. G. (2010). U.S. apologizes for syphilis tests in Guatemala. Article in The New York Times, October 1. Mallinson, R. K. (2012). Personal interview, February. Presidential Commission for the Study of Bioethics. (2012). Moral science: Protecting participants in human subjects research. www.bioethics.gov. Reggiani, A. H. (2007). God’s eugenicist: Alexis Carrel and the sociobiology of decline. Berghahn Books, Oxford. Rubenfeld, S., ed. (2010). Medicine after the Holocaust: From the master race to the human genome and beyond. Palgrave Macmillan, Retrieved from: www.medicineaftertheholocaust.org. Rubenfeld, S. (2012). Personal interview, February. Skloot, R. (2011). The immortal life of Henrietta Lacks. Broadway Paperbacks. Szasz, T. (1977). The theology of medicine. Syracuse University Press.

We must teach tolerance and understanding. We must resist and transform racism, homophobia, sexism, age-ism and bullying. Simultaneously, we must model and promote deep listening and compassion and offer support to resolve trauma. And finally, we must educate medical students, physicians, researchers, nurses, hospital staff, hospice teams, and other healthcare workers about our human collective’s past wrongs and instill a sense of vigilance in healthcare practitioners at every level. To quote NIH director Dr. Francis Collins, “The medical profession must never forget its role in the eugenic horrors of the past and must be vigilant against the appearance of any evidence of recurrences. This past must not be prologue” (Rubenfeld, p. xxi).

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Articles The Social History of Ebola in Nigeria: A Focus on Stigma and Human Insecurity Kelechi Johnmary Ani, BA, PGDE, MA Department of History and Strategic Studies, Federal University Ndufu-Alike, Ikwo, P.M.B. 1010 Abakaliki, Ebonyi State, Nigeria Tel:+234(806)155-2284 Email: [email protected] Paulinus Ogbonna Obiahu, MBBS Federal Teaching Hospital Abakaliki, Ebonyi State, Nigeria. Tel:+234(806)094-3399 Email: [email protected]

Abstract Nigerians of all social classes will not soon forget the country’s epidemic of Ebola. The disease entered the country at a time when the Nigerian Medical Association was on strike, and the speed at which the news spread created social panic. This article focuses on the social history of Ebola in Nigeria. It will show how the virus was imported into the country as well as the health hazards and stigmatization that were created from people’s reaction to the disease. This article discusses the medical, economic, social and diplomatic consequences of the Ebola outbreak on the nation building process and makes recommendations for proactive control of deadly diseases in the country.

symptoms of Ebola Viral Disease include fever, headache, chills, diarrhoea, nausea, vomiting, sore throat, headache and joint pains. Later symptoms include bleeding from the eyes, ears, nose and the mouth as well as the rectum, eye swelling, swelling of the genitals and rashes all over the body that often contain blood. It could progress to coma, shock and death (Azoma, 2014a:9). Nigeria was certified Ebola-free on October 20, 2014 by the World Health Organization (WHO) after 42 days of no new recorded cases. The previous 13 weeks ( July 20, 2014October 20, 2014) of the Nigerian Ebola epidemic witnessed approximately 18,500 face-to-face visits by the monitoring team to search for and investigate cases of infected patients, as well as primary and secondary contacts with affected persons. There were 894 registered contacts, 19 laboratory confirmed cases, with one probable case and eight deaths (7 confirmed and 1 probable), giving a case fatality ratio of 40% (Shuaib, 2014). There were a few people who survived the Ebola virus in Nigeria, including two male doctors, a female nurse and two patients (Muanya & Anuforo, 2014:1). The news of Ebola in Nigeria spread like wildfire, fuelled by ignorance and misconception. The misconception was massive and widespread, leading to an unquantifiable level of social panic in all the corners of the country. In the course of the social panic, unwholesome attitudes and dysfunctional behaviours began to emerge as people struggled to learn more about the dreaded viral disease, how to avoid it and how to protect their lives. Consequently, social panic led to suspicion and misinformation, which brought with it stigma, unwholesome behaviours and even deaths not directly caused by EVD. This study focused on the negative social response of the Nigerian citizenry in the wake of the Ebola outbreak, including massive drinking of salt water, excessive consumption of kola nuts and the deaths that followed, which intensified human insecurity at that time.

The Spread of Ebola

Ebola Virus Disease (EVD) is a severe, often fatal illness in humans, with a case fatality rate of about 50%. The virus is transmitted to people from wild animals and then spreads through human-to-human transmission via direct contact (through broken skin or mucous membranes) with the blood, secretions, organs or other bodily fluids of infected people and with surfaces and materials (e.g. bedding, clothing) contaminated with fluids from an infected person. The early

As noted earlier, Patrick Sawyer, a Liberian, first brought the epidemic to Nigeria on July 20, 2014. The fact that Sawyer denied having any form of contact with an Ebola patient in his country and the subsequent lack of proper equipment to diagnose the virus after he landed in Nigeria, allowed for the infection of more people. Those who had primary and secondary contact with Patrick Sawyer on the flight were instructed to surrender themselves for further medical examination immediately as soon as it was discovered that the Liberian had brought Ebola into the country. These contacts also faced social stereotyping, which made the security agencies and the media not announce their names initially. Some of those Good Samaritans who assisted him were named among the 59 people placed under surveillance by the Lagos State Government and the Federal Government of Nigerian. The Nigerian Centre for Disease Control (NCDC) divided the Ebola contacts into Type one and Type two contacts. Type one contacts are those who had direct one-on-one contact with Patrick Sawyer or any other Ebola infected person, while Type two contacts are those that had contact with Type one contacts (people who had contact with Patrick sawyer or an Ebola infected person). It should be noted that, notwithstanding the form of a contact one had, whether primary or secondary, any knowledge of it by the local community immediately led to stigma and generated mass insecurity in the area. Four days after the death of Sawyer in a private hospital at Lagos, the Lagos State Commissioner for Health revealed on 27th July, 2014 that 20 of the 59 people identified as having had contact with Sawyer had been screened for EVD (Azoma, 2014b:9).

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Keywords: Ebola virus, Epidemic, Salt, Stigma, Death, Nigeria

Introduction Recently, the wind of Ebola blew across many different countries of the world. It was the worst Ebola epidemic in the world history, with over 5,000 deaths in 2014. Nigeria became trapped in the Ebola disaster on Sunday, July 20, 2014 around 16 GMT, when Patrick Sawyer, an Ebola Virus Disease (EVD) patient, collapsed upon arrival at Murtala Muhammed International Airport (MMIA), Lagos from Monrovia via ASKY Airlines. He was subsequently taken to First Consultant Hospital, Obalende, Lagos, where he died after long efforts to resuscitate him failed.

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The fear of contracting the virus was the most important factor in the social insecurity that accompanied the debut of Ebola in Nigeria. The Lagos State Ministry of Health was notified of a confirmed case of EVD in First Consultant Hospital, Lagos on July 22, 2014. An Incident Management Centre (IMC) was set-up on July 23, 2014 by the Federal Ministry of Health in conjunction with the Lagos State Ministry of Health and international partners. This IMC served as a precursor for the Emergency Operations Centre (EOC). The Federal Government subsequently declared EVD in Nigeria a National Emergency on August 8, 2014.There were 59 registered contacts before Sawyer’s demise on Friday, July 25, 2014 (Azoma, 2014a:5), though he was presumed to have had contact with 72 people (Shuaib 2014). Of the 59 registered contacts, 44 were hospital contacts and the remaining 15 contacts were within the airport. Unfortunately, the EVD continued to spread, especially from Lagos to Port Harcourt, raising panic amongst the populace.

Stigma and Human Insecurity When the wind of Ebola blew into Nigeria, there was little understanding of it by either healthcare workers or the larger population. Consequently, ignorance and lack of curative treatment were the order of the day, and the population concocted all manner of stories to cover-up their lack of information. Ignorance was a major contributing factor in creating stigma and social insecurity in Nigeria. The media deserves its own share of the blame. They could have chosen journalistic integrity but any story with an Ebola headline was a bestseller and the epidemic presented them with an opportunity to maximize their profits. Everyone wanted to get the latest information on the epidemic, sometimes without regard for the validity of the source. Some Nigerians would stop whatever they were doing whenever Ebola was discussed simply because they were hungry for any information about the dreaded viral haemorrhagic disease. The Ebola hype created a disproportionate panic, anxiety and scare. There was widespread projection that the virus was about to hit the next neighbourhood and the fear of Ebola became the beginning of wisdom. This led to a culture of widespread discrimination, suspicion of the nearest person and unconfirmed stigmatization. The situation worsened when the media reported that an Ebola patient escaped from the quarantine base in Lagos. This caused massive criticism of the government and led to the demand that the Nigerian government invoke the colonial Quarantine Act of 1926. Ebola survivors and contacts, as well as their families, found out that being declared free of the disease was just a first step; they also needed to cope with stigmatization (Moser, 2014). The relatives of Ebola victims were caught up in the dilemma of what happens to the ashes of a loved one in a society that believes that the deceased must be laid to rest at home for him or her to join the ancestors peacefully in eternity. One deceased patient, whose children intended to have their mother’s ashes buried in the village, had their plans thwarted by the village elders, who preferred that the cremated body be buried anywhere else. EBV survivors were given discharge certificates certifying them disease free, but even as they declared to people that they were free of the virus and could not transmit it to others, people consciously and unconsciously avoided them. Another Ebola survivor, whose fiancée died of the disease, had to make the campaign public in order to be accepted back among his inner circle. Unfortunately, while some of his friends pitied his ordeal, the majority kept avoiding him and holding tenaciously to the idea that prevention is better than cure. The stigmatization towards him reached the point that his landlady attempted to evict him. In a

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village in Edo state, the Southern part of Nigeria, in August 2014, an epileptic patient was left to his fate, after repeated seizures, because of the fear of contracting Ebola. Within the same week, there was a sudden collapse of a Nigerian en route to Accra, Ghana a few minutes before boarding a plane at the Lagos Airport. Several hours elapsed before this victim’s corpse was removed because he was suspected to be a potential transmitter of Ebola (Uwaleke & Allu, 2014:8). The stigmatization was not only felt within the borders of Nigeria, as Ovuorie revealed two incidents involving Nigerians outside the country. The image of Nigerians abroad was frightening, and on the slightest suspicion they were quarantined or quickly deported. There was an incident in Sri Lanka where family members attending a daughter’s wedding were quarantined at the airport with no access to food, water or toilet facilities. They were later deported with no medical check after a prolonged wait (Ovuorie, 2014). He also cited an incident in which Nigeria’s contingent to the “Keeping Children Safe in Africa Conference” in Cape Town, September 3-5, 2014, was denied a visa by the South African embassy due to the Ebola scare. A Nigerian official explained Nigeria’s withdrawal from the Youth Olympics Games in August 2014, at Nanjing, China as unusual, demoralising and an extremely difficult situation that was not unconnected to Ebola (Butler, 2014). The panic involved not only the international communities’ reaction to Ebola but Nigeria’s reaction towards it as well. Flights from Monrovia, Liberia and Freetown, Sierra Leone were temporally suspended by the Federal Government as a result of Nigeria’s claims that the operators were not observing preventive rules. These were two badly affected countries in the 2014 Ebola epidemic. Some top government officials even urged the Federal Government to consider closing some of its borders, arguing that EVD was a national security issue (Ijediogor&Oropo, 2014:1-2). The Federal Government’s response was to ensure that individuals were screened on entry or exit from the country in accordance with WHO guidelines. Not only were individuals screened but their passports were branded with an Ebola alert sticker on the back. The social response to the epidemic was terrifying. An elaborated media prank, urging Nigerians to drink excessive amounts of salt water and use the same to bathe in during the wee hours of the night to avoid catching EVD, made headlines on August 8-9, 2014. These theories were purported by HRM Idakwo Michael Ameh Oboni II (Attah Igala), a traditional ruler in the middle belt and some religious leaders (Ogala, 2014). Some received it as text messages from loved ones via their mobile phones. The message and call for people to drink and bathe in salt water was transmitted with unimaginable speed, sending millions of Nigerians scampering for salt water baths late at night. Some who did not have salt in their homes, had to go knocking on the doors of their neighbours around 3:00 am, just to beat the deadline. Before day break, when the medical and health workers began commenting on the story, casualties of excess salt intake were already recorded in almost every part of the country. Over 20 people were hospitalized by August 10, with two recorded deaths in various hospitals in Plateau State alone, in the Northern part of Nigeria, as a result of excess consumption of salt water (Isa, 2014a: 6; Isa 2014b:9). In Bauchi State, two deaths were recorded; both men died of uncontrollable diarrhoea, while a pregnant woman was admitted as a result of haematuria following the salt water ritual (Garba, 2014:5). This report would not be complete without mentioning the craze for Garcinia Kola, also known as bitter kola by the populace. This had its source in some inconclusive research conducted

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by Prof Maurice Iwu, a professor of pharmacognosy and former Nigerian INEC Chairman, alongside some American researchers in 1999. They reported that extracts from Garcinia Kola stopped the replication of Ebola virus in vitro and that the extract possessed anti-inflammatory, antimicrobial and antiviral properties. As a result, rumours circulated among the populace that continuous chewing of Garcinia Kola would keep one safe from contracting Ebola virus.

Implications for Nation Building The Ebola outbreak in Nigeria created the opportunity for many people to make quick cash due to the social panic in the country. Unfortunately, Nigeria is a country that suffers from the paradox of very poor healthcare in the midst of distinguished and globally ranked health experts. The epidemic came at a time when the odds were against proactive or strategic management of the illness. Nwosu (2014:56) in an article titled “Oh God, let this Ebola virus cup pass over us,” presented a vivid picture of the ugly situation in the Nigerian healthcare sector in a series of rhetorical questions: I feel it would be unfair for the Good Lord to allow the Ebola Virus disease to berth in our country. How can God let Ebola into the country when our doctors are on strike? In a country where maternal death is still a major challenge? Where malaria has continued to kill us the same way it did to Mungo Park and his people nearly two centuries ago? How can God allow Ebola to enter a country where, by culture, we do not disclose the cause of deaths beyond the usual “after a brief illness”? A country where relatives of the dead regularly call up editors to rain curses on them for reporting that their dead died of cancer (despite that the report was correct)? You will almost think cancer was some abominable disease. How would the widow now convince mischievous in-laws that she did not kill her husband, if she is ever meant to drink the corpse’s bath water that is loaded with Ebola virus? How can God possibly expect us to burn our dead, in the name of cremation? How are we now supposed to pamper our dead loved ones and give their corpses befitting burials? If with ordinary chicken pox, our doctors and nurses are avoiding us like plague, God what would be our lot with Ebola virus (Nwosu, 2014:56). A few days after the outbreak of Ebola, the Nigerian masses quickly joined the government in criticizing the Nigerian Medical Association (NMA) for continuing in their labour action. This period witnessed the different state governments establishing committees at both state and local government level to sensitize their citizenry on the new threat to life in the country. A number of states also established isolation centres before Ebola reached the area. The social panic against Ebola led to the avoidance of handshaking on the streets, church, schools, mosque, market place, etc. It also led to increased holiday time as the federal government, in conjunction with the states, increased the holiday period for primary and secondary schools (high schools) due to the fear that those schools are potential centres for mass infection.

claims about their ability to provide cures for EVD, urging the masses to always contact trained healthcare providers. He went on to caution the Nigerian masses to desist from the culture of sending panicky messages through their phones and the social media as it was heightening social insecurity and societal fear (DailySun, 2014b:9). The movement of people who had primary and secondary contact with Ebola patients to Port Harcourt and Enugu generated widespread alarm and pushed people to immediately start leaving those cities just as others avoided any trip to Lagos, the ‘assumed home of Ebola’. The introduction of the virus in a densely populated city in the most populous black nation led to a geometric increase in viral transmission. In these cities, the health and security workers swung into action to identify and isolate those that had contact with these individuals. The situation worsened when the media reported that an Ebola patient escaped from their quarantine base. It caused massive criticism of the government and led to the demand that the Nigerian government should invoke the Quarantine Act of 1926 (Nwannekanma & Adekoya, 2014:5). Paradoxically, during the period of the Ebola nightmare in Nigeria, those who sold bush meat (cooked wild animal parts) had very poor sales because many Nigerians began to abstain from their traditional habits of eating bush-meats. The scenario was worsened by health workers who used electronic and print media to sensitize Nigerians to the dangers of eating bush meat. Okoro (2014:11) reported that the Medical Laboratory Scientists of Nigeria, Cross River branch declared that their state might be at risk for Ebola due to the high level of bush meat consumption and bat-eating communities in the state. The state chairman of the association, Gloria Archibong, called for effective emergency response and education of Nigerians. This made the price of bush meats fall astronomically because of the massive decline in patronage. There were even cases of organized demonstrations by the members of bush-meat cartels in different parts of the country. They campaigned against the artificial ‘bad-market’ created for them, which they believed was an unnecessary stereotype of their business in the wake of the Ebola threat. Responding to Nigerians’ attitude towards Liberians following the introduction of the virus into the country by a Liberian, the Liberian Ambassador to Nigeria called on the Nigerian Government to put a stop to what he described as harassment of Liberians over the Ebola disease, noting that ‘association is not causation’ (Uwaleke, 2014:8).The Federal Government had its own problems with discrimination and filed a complaint with UN Secretary General, Ban KI Moon, over the stigmatization of Nigerians by some countries when they travelled abroad, including the unconventional withdrawal of Nigerians from the Youth Olympic Games in Nanjing, China (Clottery, 2014). It also condemned the salt water ritual in strong terms (Oropo et. al, 2014:8).

The period also witnessed the emergence of some self-acclaimed healers of Ebola. That forced the then-Lagos State Commissioner of Information, Lateef Ibirogba, to advise the citizenry to be wary of the activities of fraudulent practitioners, who were making spurious

The Ebola epidemic led to loss of valuable lives and low economic turnover. The death of Dr. Ameyo Stella Adedevoh, a Senior Consultant and Endocrinologist at First Consultant Medical Centre, Ikoyi Lagos was a major loss to the Nigerian Medical Association. She was among the earliest health care providers who attended Patrick Sawyer, the index case, and acted very patriotically to ensure that the virus was not spread. Her role in containing the EVD needs more investigation and adequate reward from the Federal Republic of Nigeria and the Lagos State Government.

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In the era of the Ebola epidemic, the then-Nigerian Minister of Health, Professor Onyebuchi Chukwu, stated that Nigeria “was able to achieve more than 50 percent success rate in treating Ebola Viral Disease patients using standard World Health Organisation (WHO) protocol... the standard WHO regime includes among other things barrier nursing, fluid and electrolyte replacement, improving nutrition and micronutrient supplementation” (Muanya & Anuforo, 2014:2).

Abubakar, M. (2014). “Jonathan Declared National Emergency on Ebola”, The Guardian, August 9, pp. 1-2.

There is the need for the removal of all forms of Ebola associated stigma and social stereotyping through the dissemination of accurate information. This will be achieved through media and civil society group partnerships that condemn unwholesome behaviours towards those who are Ebola-free. The masses need education on healthcare management and effective response to epidemics. Containing an epidemic is not the sole end, as complete victory also depends upon the proper response of the population.

Butler, N. (2014). “Nigeria Official Criticizes “Unusual and Demoralising” Approach to Ebola”, Aug 17, 2014 in http://insidethegames.biz/article/1. [Accessed on June 28, 2015].

The Nigerian land, air and sea borders need to be properly patrolled, especially in this era of increasing border weakness. Such border patrols should include health practitioners who are able to adequately assess the health condition of men and women who make their way into Nigeria through these borders. Airport checks of those flying into the country are vital, especially from the Ebola endemic countries of West Africa. The federal and state governments of Nigeria need to provide and equip laboratories for advanced medical examination of disease. The practice of struggling to build specialized laboratories only when there is epidemic should be changed. The government should also partner with the private sector to ensure the establishment of centres for disease control branches in all the states of the federation. This will help bring research, outbreak investigation and management of many diseases closer to the masses. The culture of hand washing and use of sanitizers that was embraced in schools, banks, offices and churches during the era of Ebola needs to be revived. The consciousness of the masses about such preventive behaviours is needed not only to check EVD but also to manage the rise and spread of other diseases.

Conclusion This work is centred on the social history of Ebola Virus Disease in Nigeria. A Liberian, Patrick Sawyer, brought the viral haemorrhagic disease into the Nigerian State. Those who had primary and secondary contacts with Ebola infected persons were tracked down and quarantined. Thereafter, a culture of stigmatization and social insecurity erupted during the period of the Ebola outbreak, leading Nigerians to adopt dangerous practices such as drinking excessive salt and eating kola nuts in their quest to be safe from Ebola, and thereby sentencing a number of people to their untimely deaths. This study also presented various incidents involving stigma and social insecurity, both inside and outside the country, and showed how those incidents negatively impacted people’s lives. Finally, the study recommended multidimensional approaches towards a proactive management of Ebola and other potential deadly diseases that might attack the Nigerian sovereign state.

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Azoma, C. (2014a). “Suspected Ebola Patient in Lagos”, Daily Sun, July 25, p. 5. Azoma, C. (2014b). “Another Suspected Case of Ebola in Nigeria”, DailySun, July 31, p. 9.

Clottey, P. (2014). “Nigeria President unhappy with Ebola Stigmatization”, Aug 28, 2014 inhttp://voanews.com/1/2431354.html. [Accessed on June 27, 2015]. Daily Sun, (2014). “Ebola Virus: Lagos, FG urges citizens not to panic, victim’s 59 contacts placed on closed monitoring”, Daily Sun, July 29, p. 8. Daily Sun, (2014b). “No Fresh Case in Lagos-LASG”, July 31, p. 9. Ebiri, K. et al. (2014). “Nigeria Screens Air Passengers over Ebola; Scare in Anambra”, The Guardian, August 1.pp.1-2. Garba, A. (2014). “74-year-old, two others die in Bauchi after Salt-water bath”, The Guardian, August 11, p. 5. Grigg, C., et al. (2014). “Use of group quarantine in Ebola control – Nigeria, 2014”, Morbidity Mortality Weekly Report, Feb 13, 2015, p. 124. Retrieved from:www.ncbi.nlm.nih.gov/m/ pubmed/25674994/?i=15&from=/25323076/related. Iba, L. (2014). “Ebola Virus: FG suspends airline operations from Liberia, Sierra Leone”, Daily Sun, July 30, p. 53. Ijediogor, G. & Oropo, K. T. (2014). “EBOLA: Fashola urges FG to shut Borders”, The Guardian, August 2, pp. 1-2. Isa, A. A. (2014a). “No outbreak of Ebola in Plateau says Commissioner; over 20 People Hospitalized in Jos over Salt Water”, The Guardian, August 9, p. 6. Isa, A. A. (2014b). “EBOLA: Two die over Salt intake, as House vows to tackle Virus”, The Guardian, August 10. p. 9. Moser, P.(2014). “In Nigeria, battling the stigma of Ebola”, September 30, 2014”. Retrieved from: http://unicef.org/infobycountry/nigeria_76103.html. [Accessed on June 27, 2015]. Muanya, C. &Anuforo, E. (2014). “Four More Patients Survive Ebola: How Nigeria Treats Disease...”, The Guardian, August 19, pp. 1&4.

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Nwannekanma, B. & Adekoya, F. (2014). “LCCI, Akiolu Seek Public, Private Partnership to End Virus, others”, The Guardian, August 19, p. 5 Nwosu, S. (2014). “Oh God, Let this Ebola Virus Cup Pass over Us”, Daily Sun, July 30, p.56 Ogala, E., Ibeh,N.& Audu, O. (2014). Ebola sparks panic across Nigeria as Citizens scramble for Salt-water bath “remedy”, August 8, 2014, Retrieved from: http://premiumtimesng.com/ news/1. [Accessed on June 27, 2015]. Okoro, J. (2014). “Ebola Disease: Cross River May be at High Risk-Lab Scientists”, Daily Sun, July 30, p. 11 Okwe, M., Onyedika, N., & Akpan, E. (2014). A. Catholic Church Skips Hugs, Handshakes During Mass. The Guardian, August, 11. 31 p. 5. Oropo, K. T., et al. (2014). “FG Faults Salt Water Solution to Ebola”, The Guardian, August 9,pp. 2. Ovuorie, T. (2014). “EBOLA: Nigerians Suffer Stigmatization Abroad” September 28, Retrieved from:http://premiumtimesng.com/news. [Accessed on June 27, 2015]. Shuaib, F., et al. (2014). “Ebola Virus Disease Outbreak-Nigeria”, July-September 2014. Medical and Mortality Weekly Report, October 3, 2014, 63 (39) pp. 867-872. Retrieved from: www.cdc.gov/mmwr/preview/mmwrhtml/mm6339a5.htm?mobile=nocontent. [Accessed on June 27, 2015]. Uwaleke, I., Anufuro, E. & Okeke, J. (2014). How Ebola Victim Sneaked into Nigeria from Liberia, The Guardian, August 8, pp. 1-2 Uwaleke, I. & Allu, A. O. (2014). “Mystery Deaths in Benin, Lagos Trigger Scare”, The Guardian, August 12, p.8 WHO (2015). “Ebola Virus Disease” April 2015. Retrieved from: http://www.who.int/ mediacentre/factsheets/fs103/en/ [Accessed on June 27, 2015].

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Articles Intimate Ethics: A Critique of Bioethical Consultation Methodology in Hospital Settings Etan Kuperberg, MA 2-31 Summit Ave Fair Lawn, NJ Tel: (201) 956-1102 Email: [email protected]

Author Note This article is a revised version of the author’s master’s thesis. The author would like to thank William Ruddick, Matthew S. Liao, and Linda Farber Post for their comments and critique. In addition, the author would like to thank Patricia J. O’Connor and Alan Rosenberg, without whom this article would have never been possible.

Abstract This article explores the tension between moral universalism and moral relativism in the practice of the individual bioethics consultant via two generally different methodologies for implementing bioethical consultation in the clinical setting. This exploration is presented in the context of two key problems: (1) the Problem of Dehumanization, i.e. the role of the individual consultant in countering the dehumanizing elements of clinical bureaucracy, and; (2) the Problem of Authority, i.e. the issue of legitimizing the authoritative status of the individual consultant while protecting against potential abuses of the individual consultant’s authority. This article concludes that tensions between universalism and relativism remain unavoidable and that the practice of the individual consultation occurs in the navigation of this tension. Keywords: Bioethical Consultation, Mediation Method, Mathematical Method, Dehumanization, Relativism, Objectivity, Empathy

Introduction

“Whatever is done from love always occurs beyond good and evil”

Nietzsche

The origins of bioethics consultation in clinical settings (also known as Clinical Ethics Consultation Services, Healthcare Ethics Consultation, etc.), i.e. the specific facility or service for resolving medical ethical issues in health care settings, can be traced back to the 1960s with the emergence of Internal Review Boards (IRBs). Ethics committees emerged in the 1970s and by the mid-1980s, the Presidential Commission for Study of Ethical Problems in Medicine and Biomedical and Behavioral Research had “endorsed the use of [ethics] committees in its widely influential report, Deciding to Forego Life-Sustaining Treatment . . . [including] a model statue on the role and functions of ethics committees as an appendix to its report” (Pope, 2011, p. 74-75). Over the next couple of decades multiple states including, but not limited to, 50 Volume II, No. 1

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New York, New Jersey, Maryland, Texas, and Colorado, enacted legislation requiring health care settings to create facilities or services for reviewing or resolving complex ethical issues (ibid., p. 75-76). By 2007, bioethical consultation services could be found in 81% of general hospitals while 14% of general hospitals were developing such services (Fox, Myers, & Pearlman, 2007, p. 15). While bioethics consultation has to a large extent become a familiar presence in many health care settings, fierce controversy continues within the field regarding standards for educating, licensing, credentialing, assessing, and auditing bioethical consultants, not to mention controversy over how to define the role and practice of consultation (see, e.g. Dubler, N. N., Webber, M. P., Swiderski, D. M., & the Faculty and the National Working Group for the Clinical Ethics Credentialing Project, 2009; Nilson, & Fins, 2006; Agich, 2009; Swiderski, Ettinger, Webber, & Dubler, 2010; Acres, Prager, Hardart, & Fins, 2012). This article presents and critiques different understandings and interpretations of what it means and what it is to be a bioethics consultant, focusing on the question of methodology, i.e. how bioethics consultation is implemented in the hospital setting. In particular, the discussion will focus on two general schools of thought regarding methodology, namely the Mathematical Method and the Mediation Method, presenting and critiquing both on the basis of two specific concerns. The first concern is termed The Problem of Dehumanization; the second concern the Problem of Authority. The goal of this expansive analysis is to explore the tension between moral universalism and moral relativism in the practice of the individual bioethics consultant. Therefore, this article will be divided as follows: first, it is necessary to clarify what is meant by the terms Bioethics Consultant and Bioethical Consultation, what it means that The Mathematical and Mediation methods constitute two general schools of thought, and what the dual problems of dehumanization and authority are. The second section will present the Mathematical Method and the Mediation Method will be presented in the third. Both the second and third sections will critique the Mathematical and Mediation methods on the basis of whether or not they resolve the problems of dehumanization and authority. The analysis will argue that the Mathematical Method resolves the Problem of Authority, but not the Problem of Dehumanization, while the Mediation Method resolves the Problem of Dehumanization, but not the Problem of Authority. Further, the analysis will argue that the Mediation Method renders bioethical consultation morally relativistic. Finally, this article will introduce the notions of Stranger Ethics and Intimate Ethics to argue for the conclusion that bioethics consultation is best implemented in the hospital setting by combining both Mathematical and Mediation Methods, producing a tension within which the individual consultant operates. As an extra, this article also includes a brief reflection noting the connection between bioethical consultation and health care reform.

Clarification of Terms

Bioethics Consultation and Methodology This article adopts the United States Department of Veterans Affairs’ (VA) definition of bioethical consultation as a “service provided by an individual ethics consultant, ethics consultation team, or ethics committee to help patients, staff, and others resolve ethical concerns in a health care setting . . . [the purpose of this service being] to improve health care quality by facilitating the resolution of ethical concerns” (Fox, Berkowitz, Chanko, & Powell, p. 13). Journal of Health and Human Experience

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The VA’s definition of bioethics consultation refers to three models of bioethical consultation: ethics committees, consultation teams, and individual consultants. For the majority of this article, whenever bioethical consultation or bioethics consultants are referred to, the reference is specifically to the individual consultation model as opposed to the committee and team models. The only exception will be in the immediately following subsection which will explain why this article focuses on the individual model. Note that the three models of consultation referred to – committee, team, and individual – are referred to as models as opposed to methods or methodologies. In this article, the term model refers to the composition of a consultation service, e.g. it is composed of an individual, a team, a lawyer, a bioethicist, an oncologist, etc. Method or methodology, meanwhile, refers to the manner in which a given model implements its services. All three models have theories of methodology unique to them. This article is specifically interested in exploring methodologies that can be said to pertain to the individual model. In this context, what is an “ethical concern,” (Ibid.), how can it be identified and resolved? The difficulty of this question is exacerbated when a closer look is taken at the role the bioethics consultant is asked to play, or, to be more specific, the multiplicity of roles. Engelhardt (2003), for example, has posited that there are at least five roles the bioethics consultant may be asked to play at one point or another, namely that of unlicensed attorney, risk manager, psychological counselor, ethicist, and moral expert in a position of authority to make normative judgments (p. 368-472). As an unlicensed attorney, the consultant must be aware of the legal constraints within which the consultation occurs (Ibid, p. 368). As risk manager, the consultant helps the physician or physicians avoid decisions that can potentially result in a malpractice lawsuit, a risk he or she further helps avoid by attempting to placate parties involved in the situation via amelioration (Ibid, p. 368-369). As psychological counselor, the consultant helps involved parties reconcile themselves emotionally to the proposed resolution for the ethical issue, especially if that resolution is mandated by law (Ibid, p. 369-370). The difference between the role of ethicist and moral expert might best be described thus: the role of ethicist refers to the academic, intellectual ability to analyze the situation in the context of ethical terms and concepts, whereas moral expert refers to the perception of the consultant by others, i.e. being an ethicist does not mean that others will accept your judgment as having normative weight, thus, in addition to being an ethicist one must also be accepted as a moral expert in order for the consultation to be effective (Ibid, 370-371). These multiplicities of roles exacerbate the question of what constitutes ethical concerns and how they ought to be resolved in that, depending on which role or roles a given consultant chooses to adopt, a wide variety of answers can be given. A bioethics consultant who operates strictly within the role of unlicensed attorney may take a contractarian approach to the ethics question, defining ethical concerns as legal problems, while the psychological counselor/ethicist may be driven to explicitly rebel against the law as a result of empathizing with a patient during the process of attempting to help the patient accept a given resolution. A further problem confronting bioethics consultation in general is the lack of legitimacy accorded to bioethics consultants. For example, it has been argued extensively in the past that bioethical consultation cannot claim the coveted legitimizing title of being called a “profession,” (Cummins, 2002, p. 39-40). The practice of bioethical consultation also currently does not

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require a license. Thus, the question arises: who are these people claiming to be bioethics consultants and why should we, as a society, confer on them any sort of authority whatsoever? These difficulties, questions, and ambiguities can be ameliorated via methodology: by identifying which methodology the consultant adopts, we can in turn identify what is meant by “ethical concern,” how it can be identified and resolved, what role or roles the consultant ought to play, and, by using a given methodology as a standard against which the consultant is judged, we can confer legitimacy to the consultant by saying that he or she is an expert in such and such methodology of which we approve. Turning then to the question of methodology itself, namely, what methodologies there are, what are their strengths and weaknesses, and which methodology ought bioethical consultants adopt. This article will focus on what might be called two general schools of thought regarding methodology, the Mathematical Method and the Mediation Method. This article uses these terms in the same way ethicists tend to use the terms consequentialism and deontology, namely as two general categories meant to encompass a broad spectrum of theories without denying the diverse, multiplicity of theories within that spectrum.

The Dual Problem of Dehumanization and Authority Before beginning the critique proper of the Mathematical and Mediation Methods, a very basic question needs to be asked: it has been stated that Mathematical and Mediation are referred to in the same way that ethicists might refer to consequentialism and deontology. This means these methodologies of bioethical consultation will only be critiqued in their broadest, crudest sense, i.e. as caricatures or archetypes. Space constraints preclude a more exhaustive examination of these methods in this article. Of what use, then, is this critique? Any criticism that can use against a broad, crude categorization has probably been answered by a specific, refined, and more subtle theory subsumed within that categorization long before any of these words were put to paper. Answering this question requires a brief historical interlude. The emergence of bioethics in its modern iteration (i.e. the general study of medical ethics), can arguably be said to have emerged in part as a reaction to four major and dramatic historical events: the Holocaust, which lead to the Nuremberg Code, the 1963 cancer studies at the Brooklyn Jewish Chronic Disease Hospital, the 1967 studies with mentally retarded children at the New York Willowbrook State School, and Tuskegee ( Jonsen, 1993; Anderson, 1996; Gordon, n. d.). This is not to reduce the birth of modern bioethics to any one of these events, but to draw attention to a specific problem that has troubled modern bioethics since its inception, namely the Problem of Dehumanization, the treatment of human beings as though they are something less than human and thus undeserving of full moral consideration. The Problem of Dehumanization is especially acute for bioethical consultation insofar as the emergence of consultation can be attributed to a reaction against the dehumanizing elements resulting from the bureaucratization of the modern hospital setting (Degrazia, Mappes, and Brand-Ballard, 2011, p. 3; Caplan, 1980, p. 24-25; Chambers, 2010, p. 159). To explain, consider palliative care. The need for palliative care speaks volumes about the bureaucratization of health care: presumably pain relief should be a focus for all doctors, yet the

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increasingly complex infrastructure wherein each individual doctor increasingly subspecializes, focusing on specific issues, means that the patient-as-a-whole – as a human being – is easily lost as he or she is divided amongst a team of doctors, the end result being a need for a specific unit of doctors to focus on the particular issue of pain relief. Bureaucracy is good for checks and balances and the creativity made possible via team work and cross-consultation. Yet the end result can be cold and hard, in some ways precluding the possibility of intimacy that can exist when one or two doctors devote more time to caring for a given patient. It is this worry, the loss of the perspective of the patient as a human, the reduction of the patient to a specific limb or a disease in need of curing, that bioethical consultants are asked, in part, to counteract. It is somewhat ironic, therefore, that the majority of bioethical consultation models, i.e. bioethical consultation committees and teams, are bureaucratic in nature, wherein ethical concerns are deliberated over by a group of people. While it is possible for the committee and team models to address the Problem of Dehumanization, understanding how this might be accomplished necessitates a larger critique beyond the scope of this article, which focuses on the individual model. Considering, then, the important role the Problem of Dehumanization has played, it appears reasonable to critique a given methodology of bioethical consultation on the basis of whether or not it can resolve the Problem of Dehumanization. Effectively critiquing a consultation methodology via the Problem of Dehumanization requires an anthropology, i.e. an account of what it means to be human, or what constitutes personhood, in comparison to which a given person can be said to have been dehumanized, or treated as less than. There is no shortage of candidates of characteristics for what it is to be human, or at least what characteristic is morally relevant so as to warrant full moral consideration. Popular candidates include, but are not limited to sentience, autonomy, rationality, the capacity for pleasure and pain, or the notion of a soul. These anthropologies have a tendency to get entangled in long standing debates such as why that anthropology as opposed to others and how does this anthropology differentiate humans from animals, post-singularity machines, the environment, etc.? These kinds of debates will not be entered into here. Further, these debates are symptomatic of the Problem of Dehumanization. To explain, the Problem of Dehumanization is, at its essence, a problem of reductionism, i.e. it is the problem of reducing a human being, to say that he or she is three-fifths of a human (i.e. the kind of thinking that led to Tuskegee), or not a human but less so, comparable to a rat (as in the Holocaust), or, in modern clinical practice, to reduce the patient to the limb or disease under study. To say that the above anthropologies are symptomatic of the Problem of Dehumanization, then, is to say that they are reductive, they reduce a human being to autonomy or rationality or soul. These are all arguably part of what it is to be human, but focusing on one or another fails to capture the human being as-a-whole, and while they have been and continue to be useful categorizations for the purposes of ethicists, there is no denying the harms that can potentially result from such exercises. Kant, for example, only sees a given human as worthy of being considered an end unto itself if that human possess dignity, i.e. the capacity for rationality and free will. The mentally retarded and infants are thus unworthy of direct moral consideration under classical Kantianism. For a more modern example, consider Onora O’Neill’s (2002) arguments that the insistent focus on autonomy undermines trust between physicians and patients.

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I define being human, therefore, as a conglomeration that, in some ways, approaches the chaotic. To be human is to have sentience, to be capable of experiencing pleasure and pain, to be capable of rationality, of experiencing emotions, to be capable of interpreting and critiquing one’s own history, of generating values, of generating new values and overturning old values, to eat, to see, to hear, to lust, to love, to hate, to strive, to have sex, to go to the bathroom, to read, to smell, to create, to destroy, and so on and so forth. It is all of these things and irreducible to any single particular one of these things. To dehumanize is thus to ignore or explicitly deny this conglomeration, e.g. to focus only on a patient’s cancer and, in so doing, ignore the fact that the patient is more than just his or her diagnosis. To say that the role of the bioethics consultant is in part to counteract certain trends in modern hospital settings, such as dehumanization, is to raise the question as to how the consultant ought to go about fulfilling such a role. This question can be answered via methodology, but in order for a given methodology to work, the agent enacting the method must be seen as being in a position of authority and whose voice must therefore necessarily be listened to. This in turn leads to the second problem to be discussed: the Problem of Authority. The Problem of Authority can be explained by Engelhardt’s distinction between the role of ethicist and moral expert. To reiterate, it is one thing to have an academic, intellectual ability to analyze a given situation in the context of ethical terms and concepts and another for others to accept your judgment as having normative weight. Without the acceptance of others, bioethical consultation becomes an exercise in futility. Blind acceptance, however, can be dangerous: a consultant with too much authority and power can abuse his or her position (see, e.g. Spielman, 2001). The Problem of Authority is thus twofold: on the one hand it is the problem of how legitimacy is conferred to the position of the bioethical consultant while, on the other hand, the problem of how to ensure that that legitimation is not abused. Note that the dehumanization problem is hierarchically more important than the authority problem. Given the important role the Problem of Dehumanization has arguably played in bioethical consultation historically and currently, the Problem of Authority is of secondary importance, significant to the extent that resolving it enables the consultant to fulfill his or her role of resolving dehumanization. To return, then, to the question which began this subsection, namely of what use is a critique of broad, crude categorizations, the answer is that the goals in this article are relatively modest, more akin to an introduction to a broader topic than a full exploration. The goal is to answer a basic question: given the desire to resolve the dual problems of dehumanization and authority, wherein success is defined as the resolution of these dual problems, would a bioethical consultation methodology be more likely to achieve success via the adoption of a strict set of rules, or via a more flexible, relativistic method; by approaching a given conflict from the perspective of universal, supersensible laws or from the perspective of the people involved in the conflict. It is for this reason that this article will be critiquing the Mathematical and Mediation methods: the Mathematical Method will enable us to generally explore the success of more universal theories while through Mediation this article will generally explore the success of more relativistic theories. Through this exploration, it is hoped that a conclusion about the role of universalism and relativism in bioethical consultation will be found. With that said, let us turn first to the Mathematical Method.

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When bioethics consultation emerged as a job or role within the medical community in the 1970s, the immediate issue confronting these consultants was that of understanding what that role is and how it ought to be implemented (Ruddick, 1980, p. 5-11). One of the first answers put forward is what Arthur Caplan referred to as “ethical engineering” and what this article shall, as a novelty, call the Mathematical Method, namely “the application of existing theories, principles, and generalizations from the field of ethics to issues in the domain of medicine” (Caplan, 1980, p. 25). This application can involve the application of one specific theory to a case or “complementary moral theories or individual concepts” (Caplan, 1989, p. 80). This method is referred to by this article as the Mathematical Method, as opposed to ethical engineering, first and foremost to distance from, and thus not tie down the exploration of this method to, Caplan’s specific understanding of this method. But more importantly, this method is referred to as the Mathematical Method to specifically draw an analogy between bioethical consultants and mathematicians: just as mathematicians rely upon their knowledge of mathematics, a theory of ontologically universal, supersensible rules or laws in interpreting the world around them, so too the bioethical consultant following the Mathematical Method understands ethics as a theory of ontologically universal, supersensible rules or laws and relies upon them in interpreting the world. This is not to say that the mathematical consultant necessarily draws upon and uses ethics in the same manner the mathematician draws upon and utilizes mathematical principles, i.e. mathematical consultation is not limited to making moral calculations, etc. Rather it is simply to say moral principles, rules, etc. are treated as and/or given the weight of discoverable objective truths much the same mathematical principles. The term “Mathematical Method,” despite being a novel term to refer to a consultation method is still useful in order to differentiate it from specific approaches, e.g. principalism, Rights, etc. Again, recall that the Mathematical Method refers to a broad categorization of a spectrum incorporating many specific methods but not equivalent to any specific method. A bioethics consultant approaching an ethical difficulty via the Mathematical Method might use the Kantian categorical imperative, Beauchamp and Childress’ Four-principle approach, the principle of best interests, invoke the notion of Rights, analogously utilize a prior unambiguous clinical case as a comparison, etc. All cases analyzed and resolved through the Mathematical Method share at least one characteristic in common: the appeal to prior, well established, universal, supersensible theories, principles and/or generalizations in order to analyze, identify, and classify the morally relevant variables of a given case in an effort to resolve that case’s puzzles and ambiguities and produce a morally acceptable outcome. Another way to posit this is to say that the Mathematical Method encourages bioethical consultants to approach a given case from the perspective of the moral theory as opposed to the perspective of the persons involved in the case – to ultimately see the patient, however important, as one part of an equation. (An aside: to put it mildly, this characterization comparing ethics to mathematics will likely be considered a stretch by some, if not many readers, to which the author must briefly make two replies: first, to remind such readers yet again that this characterization is meant to be broad and caricature-like in nature for reasons explained above. Second, and more importantly, it is this author’s conviction that many mathematical bioethics consultants do in fact revere and treat ethics as such both in attitude and practice, even if they do not officially admit to it to others or themselves.

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Such a conviction is admittedly a weakness of this thesis to the extent that others do not share it – but I leave it to you, the reader, to decide if you agree or not.) To give a paradigmatic example of the Mathematical Method in action, consider the work of Peter Singer. In an article he co-wrote with Helga Kuhse, Singer (1988), building on utilitarian principles, uses a cost-effectiveness analysis, i.e. the evaluation of an act’s value on the basis of how much it costs for that act to be effective, or to produce a “good,” in order to test “the assumption that . . . it is always better to save the lives of the young than the old, and the younger those saved are, the better it is” (p. 102). Defining “good” as an action that increases quality of life, Kuhse and Singer created the following method of measuring life quality: given condition P, how many years of life with P would a person be willing to sacrifice in order to live a life without P? E.g. if the person would prefer one year of life without P to two years of life with P, then that person’s quality of life with P is approximately half that of a life without P, i.e. the quality of his or her normal life is twice that of a life with P (Ibid, p. 103-104). Using this method, Kuhse and Singer quantified life quality, arguing that saving the elderly man would result in him having a life quality of ten versus the eight of the young girl. Therefore, in the interest of maximizing the good, we must save the life of the elderly man in this case. Of course, Singer and Kuhse’s method involves a specific moral calculation, but the Mathematical Method is not limited to algorithms. Consider a case of autistic child with endstage renal disease who cannot receive dialysis without simultaneously being sedated whose discharge from a hospital is being delayed because nearby dialysis centers are not equipped to handle his case. Approaching this case from the perspective of Beauchamp and Childress’ Four Principles, the first question we ask regards autonomy: is this patient capable of informed consent? If not, who is this patient’s proxy? What is the patient’s/proxy’s opinion regarding discharge? And so on: the consultant’s approach toward the case is guided/dictated by the four principles which are paramount in the consultant’s mind throughout the consult.

The Mathematical Method: Regarding the Problem of Authority To reiterate, the Problem of Authority is twofold: first it is the problem of how legitimacy is conferred to the position of bioethical consultant and, second, the problem of how to ensure that legitimation is not abused. Regarding the first aspect of the authority problem, that of acquiring legitimacy, to be seen as an authority figure with the power to render moral judgment, it is not difficult to understand how the appeal to universal, supersensible morality legitimates the bioethical consultant: after all, it is through such an appeal that religious figures, e.g. priests, rabbis, imams, etc. are legitimated, i.e. by appealing to the law of a God. In this respect, it is unsurprising that one of the metaphors used to describe the role of the bioethics consultant is that of a kind of secular priest (Engelhardt, 2003, p. 371): an important aspect of what gives the religious leader power is his or her ability to invoke, appeal to, and come in the name of an authoritative morality, accepted as authoritative by the general public. So too, by invoking, appealing to and coming in the name of a universal moral theory with a rich history and accepted as authoritative, the mathematical bioethics consultant obtains the power and authority to act as a representative of morality able to dispense recommendations, ethical rulings, etc. This power and authority is obtained in several ways. The first, as already stated, is that the theory or theories, rules, and principles he or she adopts have already been accepted as an

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ethical theory or theories, rules, and principles. Thus, the consultant has a strong claim, if only on the basis of societal acceptance, to operate within the sphere and boundaries of ethics proper and therefore clearly entitled to be called an ethicist. Societal acceptance is especially important to the bioethical consultant to the extent that the consultant operates in the public sphere: as is well known, what is acceptable in the academic community is not necessarily acceptable in the public community. Bioethical consultants must therefore be careful to use universal moral theories with broad, popular acceptance A legitimate question to ask at this point is: What moral theories, rules and/or principles can be said to have been accepted by the general public as authoritative? This question is especially acute inasmuch as the work of academic ethicists is clearly obscure to the average person. But while the minutiae of meta-ethical and normative debate may be obscure, surely many basic concepts, if understood only superficially, can arguably be said to have authoritative normative weight in contemporary Western society, e.g. concepts such as Rights, the greater good, the golden rule, etc. Thus, the mathematical consultant can operate on the basis of an in-depth knowledge of a given universal moral theory while achieving legitimation via the invocation of cliché moral platitudes that accurately summarize his or her reasoning, if only superficially. Preferably, however, a communicatively skilled consultant will be able to explain his or her reasoning without having to resort to such tactics. The Mathematical Method offers the consultant a second way to obtain power and authority by enabling him or her to claim the title of expertise, i.e. to present him or herself as a “moral expert.” Consider, the term expertise typically refers to the mastery of a body of knowledge and specialized skill set (Caplan, 1989, p. 74), e.g. the psychological expert has mastered the theories and methods relevant to the practice of psychology, the expert chemist is a master of chemistry, etc. As a mathematical ethicist, the ability of the consultant to claim expertise as an ethicist is as simple as choosing and mastering a particular theory or complementary set of theories, rules and principles. For example, a Kantian bioethics consultant expert will have mastered both the meaning of and ability to implement the categorical imperative in a hospital setting, the utilitarian the principle of utility and so on. Similarly, the consultant schooled in Beauchamp and Childress’ four principles will strive to master autonomy, beneficence, non-maleficence, and justice. A corollary of the claim to expertise is the claim to consistency. By mastering a body of knowledge and specialized skill set necessary to implement his or her chosen theory or complementary theories, rules, and principles, the consultant is both better enabled and a better claimant to understanding and implementing ethics in a consistent manner. The claim to consistency is especially important in contemporary Western culture which is arguably dominated by the scientific method, a manner of reasoning which stresses, among other things, consistency both in its internal reasoning and the application of its conclusions in a consistent way. Not only do the various axioms, corollaries, principles and rules need to work harmoniously together in a compatible manner, but a given conclusion, and subsequent applications of that conclusion to the real world, must be consistent with the axioms, corollaries, etc. that preceded it. By being able to claim consistency, the consultant allies him or herself with the dominant mood toward reasoning in Western society: the consultant can also claim to know and implement ethics in an almost scientific manner, e.g. Peter Singer, who, as explained above, can quantify life quality, resulting in readily explainable ethical decision. The

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claim to consistency in turn enhances the power and authority of the consultant who can now present him or herself as a kind of Moral Scientist, connecting him or herself analogously to an institution – science – granted great prestige in modern day culture. With consistency comes the ability to standardize: to posit a set of rules and principles for consultants to conform to. This is especially important for bioethics consultants considering the problem of the lack of obvious legitimacy conferred on their role in the hospital setting, as epitomized by the fact that there is currently no license to practice bioethical consultation in addition to contemporary ongoing disputes regarding standardization of practice (see, e.g. Arnold et al., 2011). The ability to standardize the practice of bioethical consultation means that there is a clear set of educational goals to achieve prior to obtaining the title of consultant which could lead to the creation of a bioethical consultation license. Finally, standardization enables accountability, answering the second half of the Problem of Authority, i.e. how to ensure that that legitimation is not abused. Conformance to educational goals, rules, and principles provides a basis on which to judge the entitlement to the role and efficacy of the job performed by the bioethics consultant. Thus, it would be easier to determine whether or not the person is entitled to practice consultation in the first place. It is also easier, post initiation, to critique the work done by the consultant: job oversight would entail simply determining whether or not a given case handled by the consultant conforms to the expectations set by, e.g. the categorical imperative, principle of utility, theory of Rights, Beauchamp and Childress’ four principles, etc. Failure to meet expectations would immediately constitute a red flag, calling into question whether or not the consultant is acting ethically, or is competent enough to perform his or her job properly. Accountability also enables transparency, i.e. clarifying, explaining, and presenting the role of the bioethics consultant is as simple as clarifying, explaining, and presenting the theory or complimentary set of theories, rules, and principles the consultant is expected to conform to, removing the intimidating aura of mystery that might otherwise surround the consultant’s role. This enhances the power and authority of the consultant insomuch as his or her role becomes both understandable and liable to oversight, retarding the potential for abuse.

The Mathematical Method: Regarding the Problem of Dehumanization As explained earlier, the Problem of Dehumanization is, in essence, a problem of reductionism, i.e. to reduce patients to specific characteristics or variables and, in the process, deny, implicitly or explicitly, their humanity. This is a problem the Mathematical Method, when applied too strictly, fails to resolve. Strictly employing the Mathematical Method reveals the consultant as naïve: it is to presuppose that real life cases of moral ambiguity, with all their potentially numerous minutiae, complexities and idiosyncrasies can always be reduced to the same, or similar enough, variables. A reductive presupposition considering that: (a) a given case may not contain the variables relevant to the application of the theory/theories, rules, and/or principles in which the consultant has expertise, rendering him or her unable do his or her job; (b) expertise in a given theory, rule, or principle may lead to confirmation bias, i.e. the consultant may intentionally or unintentionally interpret the case as though the relevant variables are present, despite the fact that (a) pertains. The problem of (b) in particular stems from the consultant approaching a

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given case from the perspective of the theory via which he or she interprets the case at hand. To borrow a saying from Sherlock Holmes, it is to let the theory twist the facts instead of letting facts twist the theory. Mathematical ethics may work in an academic setting, where one can streamline cases to their basic components while assuming all things being equal, but real life has a way of escaping the narrow confines of academic cases. Theory and reality may sometimes conform to one another, but when it comes to morality, this tends to be the exception, not the rule. Cases of moral ambiguity fluctuate. Theories, codes, rules, and/or principles provide a useful starting point with which to analyze a given case, but situations often progress and evolve to a point beyond which a given theory, code, rule, and/or principle prove useless. The problem of naivety and reductionism extend to the way in which the patients involved in the case are treated, undermining one of the major roles for which bioethical consultation emerged in the first place. As explained earlier, bioethical consultation was partially a reaction to the bureaucratization of hospitals and the worry that the hospital, as a bureaucracy, would reduce its patients to symptoms or puzzles to be solved, dehumanizing the patient in the process. The consultant was meant to refocus the doctors’ attention to and treatment of patients as persons (Degrazia, Mappes, and Brand-Ballard, 2011, p. 3; Caplan, 1980, p. 24-25; Chambers, 2010, p. 159). But strict adherence to the Mathematical Method encourages the consultant to do the same thing: to reduce patients to a series of relevant variables and a puzzle to be solved, dehumanizing them in the process and risking the problems of (a) and (b). This is a good place to ask the question concerning what is problematic about the Problem of Dehumanization. If the relevant variables are, for example, patients’ considered desires, hopes, general priorities, and the physicians’ resources and competencies, etc. why is dehumanization a problem? If anything, dehumanizing the problem facilitates expediency. A given consultant has only so much time to spend on a given moral conflict, especially if that conflict requires immediate attention, e.g. who gets access to a ventilator during an emergency situation involving a higher than average influx of patients, or a patient requiring immediate surgery. Further, not all characteristics or idiosyncrasies of a given patient are necessarily morally relevant, e.g. why should the patient’s preference for Microsoft over Apple affect the consultant’s decision? Surely certain characteristics of the patient are more relevant to the consultant’s decision process than others. The answer is the difference between focusing on relevant variables and ignoring everything except the variables relevant to the method. In one case, the consultant attempts to gain an understanding of the person-as-a-whole, and on that basis give greater weight to certain characteristics over others, e.g. when a patient with a well-known passionate love of running develops gangrene in his leg and prefers hospice care over amputation, the consultant may give greater weight to the patient’s love of running over a strict emphasis on assessing the patient’s capacity for autonomy. In the other case, the mathematical consultant only interested in autonomy ignores the patient’s love of running and only focuses on the patient’s capacity for autonomy, with the result that concern for the patient is reduced to answering the question does this thing have autonomy or not? The Problem of Dehumanization, therefore, is not necessarily contra-expediency, nor does it deny that certain variables are more morally relevant than others. It does, however, demand that the consultant take into account the patient-as-a-whole as much as possible, given time constraints and the consultant’s ability to establish a rapport with the patient.

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Clearly in practice, consultants do not consciously attempt to apply the Mathematical Method in the strict manner described above. But the Mathematical Method does lend itself and makes it all too easy for consultants to fall into the trap of the Problem of Dehumanization as it encourages them to approach a given case with the mindset of theories, rules, principles, etc., rather than the mindset of first-and-foremost-the-patient-is-a-human-being. In conclusion, the Mathematical Method successfully resolves the Problem of Authority by giving the consultant ready access to moral theories that enables both legitimacy and a standard via which the consultant can be held to account. In contrast, with regard to the Problem of Dehumanization, the Mathematical Method arguably fails, or at the least raises the risk of failure. The Mathematical Method encourages dehumanization to the extent that it goads the consultant into the approaching the problem from the perspective of the moral theory rather than the patient, to reductively think of and consider the patient in terms of does relevant variable P pertain? In so doing, the consultant risks failure in fulfilling the role for which bioethical consultation was, in part, created, as an agent of counter-dehumanization.

The Mediation Method In 1993 Margaret Walker published an article emphasizing the need to move beyond the Mathematical Method to a method more akin to negotiation where the consultant pays more attention to patients as persons with histories and values, wherein the consultant is morally impartial as opposed to imposing his/her chosen understanding of ethics via mathematical ethics, etc. (p. 37-39). While certainly not the first or only person to recognize the problems with the Mathematical Method (See, e.g. Ruddick, 1980, p. 10; Caplan, 1980; Caplan, 1989; Fox, McGee, and Caplan, 1998), Walker’s article does exemplify a shift in moral thinking with regard to bioethical consultation methodology from the Mathematical Method, i.e. moral universalism, to a more relativistic morality wherein moral resolutions are more relative to the idiosyncrasies of the persons involved in the given moral conflict. This more relativistic morality can be called the Mediation Method. The Mediation Method is today probably most closely associated with the works of Nancy Dubler and Carol Liebman. It is in many ways an interpretation of the role of bioethical consultation that emerged specifically as a response to the Problem of Dehumanization plaguing the Mathematical Method. The Mediation Method refers to a methodology wherein the consultant, qua mediator: . . . works with the [conflicting] parties, helping them identify their goals and priorities, generate and explore options, and exchange information that may be necessary for formulating a solution. Unlike a judge or arbitrator, the mediator is not interested in acquiring information in order to determine what happened and who is to blame, nor does a mediator decide who is right and who is wrong or impose solutions on the parties. In mediation the historical facts are important only insofar as they give the mediator and the parties an understanding of how each of them experienced the event that brought them to mediation. (Dubler and Liebman, 2004, p. 11)

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(Dubler and Liebman are not quoted in order to identify the school of mediation with their specific interpretation of the Mediation Method. Rather the intent here is to use their words out of context in order to describe the school of mediation in general and will thus diverge from their particular interpretation.) Note that the Mediation Method, like the Mathematical Method, applies preexisting theories, principles and generalizations. The difference, however, is that the Mathematical Method uses moral theories in a manner akin to a judge or arbitrator, i.e. as a person imposing a universal standard on all persons involved in the conflict and whose normative pronouncements is something that ought to be obeyed by all. In contrast the Mediation Method uses moral theories tailored to the reality of the hospital environment in general and the specific idiosyncrasies of the case at hand, not in order to impose a universal standard whose obedience is obligatory on all, so much as to enable the involved persons themselves to come to a satisfactory resolution. All applications of the Mediation Method share three general characteristics. First is an emphasis on impartiality on part of the consultant (Perlman, 2001). It is not the consultant’s role to choose a theory, principle, or generalization and force his/her conception of ethics onto a given situation or onto the conflicting parties, remaking the hospital environment in the image of his/her morals like some powerful god. The consultant is not there to make the hospital ethical. Instead, the consultant must be morally impartial. He or she is there to help conflicting parties understand their own values, morals, and the way in which the different parties interpret the issue/conflict in which they are currently embroiled. The consultant enables these understandings and interpretations via the theories, principles, and categorizations which he or she uses as linguistic tools to help the conflicting parties analyze and critique their apparent conflict in the hope of enabling a satisfactory resolution. In this way, the bioethics consultant qua mediator lets the hospital environment be ethical, i.e. he or she allows parties to decide for themselves the moral dimensions of their situation. The consultant is there to help, to enable, to guide, not to enforce, nor define, nor demand. This requires impartiality, not partiality on part of the consultant. Second is the emphasis on history and narrative, where history refers to a person’s or persons’ past and narrative refers to the story or interpretation constructed about that past, as well as the present and what will occur in the future (Walker, 1993, p. 35-36). As stated in the quote above, “the mediator is not interested in acquiring information in order to determine what happened . . . historical facts are important only insofar as they give the mediator and the parties an understanding of how each of them experienced the event that brought them to mediation” (Dubler and Liebman, 2004, p. 11). This may initially sound odd: presumably, it is important to discover the facts concerning a given case, i.e. what happened objectively. Obtaining objective facts is usually considered necessary for a sound assessment of what has occurred and how what has occurred, if a conflict is involved, might be resolved. But the Mediation Method does not treat ethics as a science or a mathematical formula: what is important is not necessarily what objectively occurred, but how the parties subjectively interpret what occurred, what narrative they constructed concerning past and current events as well as the narrative concerning what they want to happen in the future. Bioethics consultants qua mediators do not operate strictly within objective facts; they operate primarily within the subjective narratives of conflicting parties, presupposing that conflict lies within those subjective narratives. Learning these narratives necessitates treating involved parties as persons with histories, values, and value-laden narratives constructed about what has occurred in those 62 Volume II, No. 1

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histories and what those occurrences mean. This is not to say, however, that objective facts are ignored or completely irrelevant. It is important, for example, that the medical facts are objective and not merely a subjective interpretation, e.g. a diagnosis of a terminal disease ought to be objectively determined, not a subjective interpretation of a coughing fit. But a greater emphasis is placed on the importance of subjectivity in the Mediation Method than in the Mathematical Method Third is an emphasis on conflict resolution skills (Walker, 1993, p. 37-38). As stated above, the Mediation Method is more akin to negotiation than applied ethics and as such consultants qua mediators use theories, principles, and generalizations of mediation applied to hospital settings in order to do their job. It is on the basis of the question of what theory, principles, or generalizations to use and how they ought to be implemented that most theories of Mediation implementation diverge resulting in a plethora of specific mediation methodologies. One example of the Mediation Method in practice, though it incorporates elements of the Mathematical Method, is the VA’s Integrated Ethics program which advocates the CASES approach. CASES is an acronym for Clarify, Assemble, Synthesize, Explain, and Support: five steps a bioethics consultant must go through in every consultation case, although a given step may prove irrelevant to the case at hand (Fox, et al. p. 25-26). In the first step, Clarify, the consultant characterizes the request for a consultation, determining who made the request, whether it constitutes an ethical concern or if the request would be better handled by a different service, e.g. the legal department. The consultant ensures that parties involved in the request have realistic expectations about what will occur during the consultation process, and, if the problem necessitating a consultation is indeed an ethical one, formulates an ethical question, e.g. “given [uncertainty or conflict about values] what decisions of action are ethically justifiable?” or “given [uncertainty of conflict about values] is it ethically justifiable to [decision or action]?” (Ibid, p. 27-31). The purpose of the ethics question is to posit a lucid, concise formulation of the core issue in order to enable all involved parties to understand the problem at hand and give them a clear goal to work toward (Ibid, p. 30-31). Assemble, the second step, involves the gathering, verification, and determination of what constitutes relevant information, e.g. medical facts and history, the values and narratives of parties involved in the case, especially the values of patients or medical proxies, etc. These relevant facts in turn need to be concisely and lucidly summarized for the benefit of all involved parties (Ibid, p. 32-37). In the third step, Synthesize, the consultant determines how the relevant information ought to be analyzed, e.g. whether or not a committee meeting is necessary, and engages in an ethical analysis, taking care to “not rely exclusively on a single approach to ethical analyses; rather . . . draw[ing] on a broad repertoir of approaches and incorporat[ing] elements of multiple approaches as appropriate when analyzing a single case” (Ibid, p. 39). Thus, rather than always deferring consistently to the same ethical theory or principle of generalization like a mathematician, the consultant should remain flexible while choosing an ethical analytical tool as relevant and necessary to a given case, e.g. in a case involving dementia, a principle involving informed consent may be useful. The goal of this analysis is to generate ethically justifiable resolutions for the parties involved in the conflict to use, should they so choose (Ibid, p. 38-43).

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The fourth step, Explain, has the consultant summarizing the outcome of the analysis for the parties involved, including a written consultation report explaining the relevant information, resolutions, and process via which those resolutions were generated, for inclusion in the patient’s medical records (Ibid, p. 44-46). Finally, the last step, Support, involves following up with the parties to determine whether they found the consultation useful, whether or not the case needs to be reopened, and critiquing the consultation case to see if it reveals that the consultation service as a whole has problems necessitating resolution and whether or not the individual case identifies ethical problems within the general hospital environment (Ibid, p. 47-48). The VA’s Integrated Ethics program exemplifies the Mediation Method in several ways. The consultant focuses on the history and narratives of parties involved in the conflict, does not enforce his or her ethical judgment onto those parties but rather recommends resolutions for those parties to choose whether or not to adopt, focuses on conflict resolution skills, etc. It does, however, also incorporate some elements of the Mathematical Method as well, as seen by the suggestion in the Synthesize step that consultant use ethical theories, principles, and generalizations when relevant. But unlike the Mathematical Method, the Integrated Ethics program demands that the consultant “not rely exclusively on a single approach” (Ibid, p. 39), and instead be flexible in the approach adopted, even if the approach is inconsistent with prior and future approaches. The only consistencies of the CASES approach are the five steps on the basis of which standardization and accountability is enabled.

The Mediation Method: Regarding the Problem of Dehumanization An aspect of the Problem of Dehumanization not discussed thus far is moral pluralism and multiculturalism. Hospital settings by their very nature involve the ingathering of peoples from different cultures with pluralistic conceptions of values and interpretations of morality. An environment of cultures, values, and morals interacting and, at times, clashing with each other is not unique to the hospital: this can describe in almost any office space or even any household. What is somewhat unique to the hospital is that this multiculturalism and moral pluralism takes place in a tense environment with a high potential for emergency situations requiring fast decision making and thus a high potential for volatile reactions. With regard to the Problem of Dehumanization, multiculturalism and moral pluralism constitutes an element of the hospital environment that can exacerbate the problem. Dehumanization can already easily occur between two people with similar backgrounds who know each other, so how much more so between those who don’t know each other and who come from diverse backgrounds. The racism, sexism, etc. that can occur from this is well known, e.g. to use less offensive examples, that Asians are “sneaky,” the Jews “clever,” the Irish “drunks,” etc. Mediation allows for moral pluralism and ethical complexity. The Mathematical Method, as a method that invokes a universal moral theory, encourages the consultant to impose his or her moral understanding upon all parties involved, ultimately regardless of whether or not they agree with his or her interpretation of morality. In contrast, the consultant qua mediator is deliberately impartial, operating within the moral boundaries of the parties involved, not the boundaries of the consultant’s conception of universal morality. From the very start, therefore, the mediating consultant accepts the potential for a multiplicity of values at play, not all of which agree with each other. The mediating consultant operates within this complex web of

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pluralistic, competing values, actively engaging with the hospital’s multicultural environment. This precludes the possibility of naivety on part of the consultant: he or she cannot simply reduce the situation at hand to one or two variables as necessitated by a chosen ethical theory, principle, or generalization, nor fall into the trap of confirmation bias thereby. The consultant is forced from the beginning to understand that a given situation may likely have its own unique idiosyncrasies, with new and unusual relevant variables and values and morals never encountered in previous consultations. This means, further, that the consultant is forced to treat all parties involved in a conflict as persons with histories and subjective narratives concerning what has occurred. The Mathematical Method encourages the consultant to treat the patient as a variable, a puzzle to be solved, dehumanizing them in the process. Mediation demands that the consultant focus his or her attention to the patient as a person, that he or she approach a given moral conflict from within the perspectives of the persons involved in the conflict rather than from the outside perspective of a moral theory. Thus, the Mediation Method can be said to resolve the Problem of Dehumanization.

The Mediation Method: Regarding the Problem of Authority As seen above, universalism goes a long way toward resolving the Problem of Authority: universal moral theories are more readily accepted by the general public, as exemplified by religious morals, enable consistency, standards, accountability, etc. It is difficult, however, to subsume the Mediation Method to universal morality. As explained earlier, the Mediation Method does not see ethics as a science or a mathematical formula: what is important is not necessarily what objectively occurred, but how the parties subjectively interpret what has occurred, what narrative they have constructed concerning past and current events as well as the narrative concerning what they want to happen in the future. Bioethics consultants qua mediators do not operate strictly within objective facts; they operate primarily within the subjective narratives, values, and morality of conflicting parties, presupposing that it is within those subjective narratives that the conflict lays. Another way to put this is to say that the bioethics consultant qua mediator recommends moral resolutions that operate relative to the morality of involved parties, or that the Mediation Method constitutes a form of moral relativism to a degree. Resolving the Problem of Authority under the Mediation Method is difficult to the extent that it is a relativistic moral theory. As a relativistic theory, it undermines the Problem of Dehumanization as a moral problem in that the choice to focus on dehumanization as a foundation on the basis of which to critique a given methodology becomes a morally arbitrary choice. A consultant would seemingly be just as justified in choosing a moral theory that posits that the persons involved in the conflict ought to be dehumanized, learning and operating within the narratives of involved parties in order to achieve that dehumanization to the fullest extent possible. Thus, patients have every reason to be suspicious of and fear abuse from the bioethics consultant. Relativism can lead to inconsistency: some mediation theories, such as the Integrated Ethics program, explicitly denounce the practice of committing consistently to a specific theory, principles, and/or generalization: the CASES approach, as noted earlier, insists that the Journal of Health and Human Experience

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consultant “not rely exclusively on a single approach to ethical analyses; rather . . . draw[ing] on a broad repertoire of approaches and incorporat[ing] elements of multiple approaches as appropriate when analyzing a single case” (Ibid, p. 39). Even where a mediation theory does not explicitly denounce consistent commitment, the insistence of the Mediation Method that the consultant operate within the boundaries of the morals and/or values of involved parties means that the bioethics consultant may not be able to consistently commit to a given understanding or definition of what constitutes morality, he or she must fluctuate relative to the morality and/ or values involved in a given case. Inconsistency, especially within the fluctuation rendered possible by relativism, undermines the possibility of standardization and accountability and increases the potential for abuse. Further, without a set of moral standards, the question arises as to how it is possible to hold a bioethics consultant to account. On what basis can we judge whether or not the consultant has succeeded in his or her task or whether or not he or she has abused the parties involved in a given case? The moral relativism inherent in the Mediation Method thus calls into serious question whether mediation can successfully resolve the Problem of Authority. Considering, however, the Mediation Method’s success with resolving the Problem of Dehumanization it is worthwhile to explore the Mediation Method’s moral relativism further in an effort to ascertain whether or not it is also capable of resolving the Problem of Authority.

Intimate Ethics vs. Stranger Ethics Thus far, the Problem of Dehumanization has been discussed in terms of what the bioethics consultant ought not to do, e.g. do not treat the patient in a reductive manner. Discussing the Problem of Dehumanization only in terms of normative prohibitions is not necessarily the same thing as positing a solution to the problem: there needs to be a discussion couched in positive language as well, i.e. normative obligations, what the consultant ought to do. To that end, the Problem of Dehumanization might also be termed the Problem of Establishing Intimacy, a problem resolved via the practice of Intimate Ethics. The opposite of Intimate Ethics is Stranger Ethics. In some ways Stanger Ethics, can be said to emerge in response to the worry of something akin to Hobbes’ war of all against all or the fear of abuse or disrespect, intentional or unintentional. This can occur in a morally pluralistic society when we simply do not know the history, the narrative, the culture, the values, and the morals of others. Stranger Ethics refers to the interpretation of and insistence that morality ought to consist of strict, impartial, universal rules and principles applicable to all. This insistence is meant as a defensive measure in a multicultural, morally pluralistic society, a society of people estranged from one another. In a society of strangers, the only way to avoid problems of tyranny and abuse is to construct a society of general, universal rules that all must consistently obey – general in the sense that it allows for individualism as much as possible while protecting citizens from harm (Toulmin, 1981, p. 34). Being general in nature, Stranger Ethics is necessarily reductive, focusing on one or two specific universal anthropologies as a basis for extending moral consideration to as many people as possible.

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In contrast, Intimate Ethics refers to the morality of a relationship that has grown beyond the need for Stranger Ethics, beyond the need for a simple Good and Evil. To explain, Stranger Ethics is necessary insofar as members of a given society are estranged from one another, e.g. I see and experience you as something other, a foreign entity I do not understand and am thus precluded from empathizing with. Boundaries exists between you and me – as though we are interacting with a sheet of glass between us – and, since I wish to engage you in a moral fashion, I defer to Stranger Ethics so as to avoid inadvertently offending, disrespecting, and/or abusing you, as well as to avoid violating those boundaries. But, as I get to know and understand you, our relationship changes: the boundaries begin to break and shatter as you evolve from something other to something familiar, as an intimacy begins to be established between us and we understand each other’s idiosyncrasies, each other’s beliefs, hopes, desires, lusts, strengths, weaknesses, values, etc. The greater the intimacy, the less the relevance and need for the caution, hesitation, and protection of Stranger Ethics. We understand each other, know each other, we can respond in a relativistic manner to the idiosyncratic needs of each other. Morality becomes less about strict, impartial, universal rules and more about mutual discretion, respect, trust, and, hopefully, love (Ibid, p. 35). “Whatever is done from love always occurs beyond good and evil” (Nietzsche, 2000, p. 280). That being said, of course, even in a deeply intimate relationship, it may still be necessary to retain some elements of Stranger Ethics as a safeguard should intimacy fail, e.g. signing a prenuptial agreement prior to marriage, etc. It might be asked at this point what is hoped to be achieved by introducing even more terms. The answer is that these terms add a further layer of understanding that arguably explicitly exposes the essence of both the Mathematical and Mediation Methods. The Mathematical Method is arguably a reaction toward the fear of strangers and it is thus unsurprising that it resolves the Problem of Authority. In contrast, the Mediation Method, as exemplified by the discussion of history and narrative above, is concerned with establishing intimacy and thus resolves the Problem of Dehumanization. Both the Mathematical and Mediation Methods react toward legitimate concerns and desires. The ideal would be to combine both in an effort to resolve the dual problems of dehumanization and authority. More than ideal, such a combination appears necessary: both problems require resolution in order for the consultant to consult effectively and given that each given method only really solves one given problem, both methods are needed. But how can universalism and relativism, strangeness and intimacy, combine in a meaningful, coherent manner? Does not universalism preclude the possibility of relativism and vice versa?

Intimate Ethics: Resolving the Problem of Relativism The task remains, then, to construct a hybrid method of consultation that incorporates the essence and benefits of both methods in order to resolve the dual problems of dehumanization and authority. Constructing such a method in detail, however, is beyond the scope of this article inasmuch as it is introductory in nature and primarily focused on critiquing bioethical consultation methodology at a very basic level, i.e. whether a relativistic or universalistic approach would better suit the needs of bioethical consultation with regard to resolving the problems of dehumanization and authority to which the answer now appears to be all of the above. That being said, it would be improper to simply end the article at this point without tentatively suggesting a way forward.

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When one finds a given moral theory to be relativistic (generally considered a toxic characteristic amongst ethicists), there are two basic resolutions that can be enacted: one is to attempt to escape relativism altogether and posit the theory as squarely situated within the tradition of universalism. The other approach is to embrace that relativism. I would like to suggest that bioethical consultation would be better implemented via the embrace of its relativistic characteristics. As explained above, moral relativism undermines the ability of the Mediation Method to resolve the Problem of Dehumanization to the extent that it renders the decision to critique bioethical consultation via the Problem of Dehumanization or to use Intimate Ethics as a foundation of a moral theory morally arbitrary and, as a method built on an arbitrary foundation, cannot objectively posit itself as superior to any different method. In embracing relativism, the consultant would have to admit that the decision to pursue a resolution of the dehumanization problem is, in some sense morally arbitrary. But this does not preclude the consultant from doing so nonetheless. It was arguably the societal recognition of the Problem of Dehumanization that contributed to the creation of the role of the bioethics consultant. Previous sections presented the Mediation Method as a method specifically concerned with approaching a given case from within the relativistic narrative framework of involved parties in order to establish an ethics of intimacy. However, while the Mediation Method may be relativistic, it is a relativism constrained within the specific system of stranger morality: the morality of the multicultural and morally pluralistic society which created the role in the first place and the society of the parties directly involved in a given case. The bioethics consultant is not a free-range academic (Agich, 2009, p. 342), nor a politician, nor legislator, nor tyrannical dictator. The role of the bioethics consultant is unique: its continued existence is contingent on the approval of those whom the consultant serves, namely the involved parties and the society that created and continues to accept the role in the first place. It is “a practice that evolved to assist patients, families, and health professionals who were confronting ethical questions and concerns in the course of patient care” (Ibid.). Further, though the consultant qua agent of counter-dehumanization seeks to establish intimacy, the consultant still remains a stranger, an outsider brought into the middle of an ongoing issue specifically to provide a perspective of someone outside of and apart from the issue at hand. Thus, with regard to the Problem of Authority, acting within a relativistic framework is useful insomuch as it enables the consultant to establish intimacy, but that relativistic framework takes place within a larger framework – a framework based on Stranger Ethics, the ethics of the society that created and legitimated the consultant and which constrains the consultant’s power, delimits the boundaries of what constitutes an acceptable moral outcome, and prevents the relativism of the individual consultant from acting contrary to society’s desire that the consultant act contra dehumanization. In this way, insomuch as the Mediation Method constitutes a framework of relativism couched within a mathematical framework of universalism, it can be argued to resolve both the Problem of Dehumanization and Authority, though admittedly not neatly: tensions between relativism and universalism remain.

brain dead husband’s sperm for another attempt at IVF. As a practitioner of Intimate Ethics and the Mediation Method, the bioethics consultant works to understand and act relative to the values of the wife, who clearly wants the sperm harvested, the husband, whose past actions indicate approval of his wife’s desire to pursue IVF treatment, and the doctor who is morally uncomfortable with the idea of harvesting sperm from a brain dead male. On an intimate scale, we might expect the consultant to favor the wife’s values, given her history with her husband, her strong moral convictions, and the doctor being more ambiguous about the morality of the situation. On the larger scale of hospital policy, however, where stranger ethics has a stronger presence, another variable constrains the options of the consultant, namely that of informed consent. The husband’s past actions indicates favorability toward sperm harvesting, but he left no documented evidence, no signed informed consent form, specifically authorizing his sperm being harvested while brain dead. This calls into question the legality of harvesting the husband’s sperm and increases the likelihood that the consultant will recommend against catering to the desires of the wife. Thus begins the tension-filled task of respecting hospital policy while also respecting the wife’s personhood, history, desires, frustrations, etc. Relativism thus does not prevent the Mediation Method from resolving the Problem of Authority as mediation is not purely relativistic. Even within the relative confines of a given case, larger societal forces demands and imposes the Mathematical Method on the process much like an egg shell prevents the fluid yolk inside from having free rein. The process of bioethical consultation at its core can thus be construed as a tension between the contradictory demands of relativism and universalism, between mediation and mathematics, intimacy and estrangement. Describing bioethical consultation as a tension-filled process caught between contradictory demands is not necessarily surprising. As explained and exemplified by Engelhardt above, the consultant is asked to play multiple roles, some of which might contradict each other. The good bioethics consultant and good bioethical consultation methodology, based on the dual problems analyzed in this article, is the one that successfully navigates this tension, establishing intimacy with patients while maintaining legitimacy without perpetuating abuse. This tension-filled navigation is arguably the very heart of what it means to practice bioethical consultation.

Conclusions This article explored the role and success of moral universalism versus moral relativism in bioethical consultation via the Mathematical and Mediation Methods, where success is defined as the resolution of the dual problems of dehumanization and authority. It was concluded that this resolution might best be achieved by a method combining both mathematics and mediation, universalism and relativism, wherein a priority is placed on relativism over that of universalism to the extent that the Problem of Dehumanization ought to be resolved prior to the Problem of Authority and that a relativistic morality is more successful in achieving intimacy than that of a universal morality. A specific method that might achieve resolution in such a manner is the VA’s Integrated Ethics program whose CASES method, as explained previously, combines mediation and engineering.

To explain, consider the following scenario: a husband and wife have been attempting in vitro fertilization (IVF) treatment for years unsuccessfully. Recently, following an accident, the husband was pronounced brain dead. The wife is requesting that her doctor harvest her

It is not the goal of this article to endorse the Integrated Ethics program here, however, as there are many other variables besides dehumanization and authority to consider in determining which methodology a bioethical consultant ought to adopt, e.g. expediency, the relationship between law, hospital policy, and morality, etc. Further, as explained in earlier sections, this

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article is introductory in nature, only exploring bioethical consultation methodology in its broadest, crudest sense. Following up on the topics presented herein would require, among other things; (1) exploring in more depth the concepts of Stranger and Intimate Ethics; (2) exploring in more depth what it means for the role of bioethical consultation to constitute a tension between universalism and relativism; (3) a more comprehensive hierarchal list, beyond that of dehumanization and authority, of variables that consultant’s ought to consider in determining which methodology to adopt; (4) a more expansive critique of the relationship between bureaucracy and dehumanization, as well as; (5) a greater focus on critiquing specific methodologies as opposed to general schools of thought.

Reflection: Can Bioethics Consultation Contribute to Health Care Reform? As I sit and type these words, the 2016 presidential primaries have begun and the U.S. health care system finds itself at a crossroads: Democratic candidates espouse their desire to push health care further into the domain of socialized medicine be it by expanding the Affordable Care Act or switching to a single-payer system while Republican candidates demand an about-face and return to a more capitalistic, free-market-based approach. The heated rhetoric over our health care system is unlikely to be resolved via elections and one can confidently predict that fierce debate and struggles in one direction or the other will continue no matter who becomes president. The facts, however, for the time being continue to remain the same: the U.S. spends more money (17.4 % of GDP in 2013 – See, Hartman, Martin, Lassman, Catlin, & the National Health Expenditure Accounts Team, 2015, p. 2) for lesser quality of health care (Davis, Stremkins, Squires, & Schoen, 2014) for a lesser percentage of its citizens (13.4% were uninsured in 2013 – see, Smith and Medalia, 2014, p. 2-3) than any other developed industrialized nation. Whether the Affordable Care Act will ultimately prove effective in resolving these troubling characteristics of the U.S. health care system is unknown at this time, but it is known that we must continue to work to change these problems for the better from as many angles and routes as possible, to attempt to decrease these high costs while improving quality of care and increasing the percentage of people covered by insurance. One potential avenue, often overlooked and not often enough discussed, is via bioethical consultation services. While bioethics consultation is still currently in the process of standardizing and professionalizing its services, studies have nonetheless documented a link between utilizing bioethics consultation and achieving consensus in goals of care, e.g. improved communication and decision-making, as well as the reduction in unnecessary or futile medical consumption, e.g. shorter ICU and general hospital stay (see, e.g. Chen, Chu, Kao, Tsai, Huang, & Ko, 2014; Schneiderman, Gilmer, & Teetzel, 2000; Dowdy, Robertson, & Bander, 1998). Bioethics consultation, in other words, is linked to increased quality of care and decreased quantity of cost and should thus be taken seriously as a method of enacting desperately needed reform – a method admittedly insufficient on its own but one that when combined with others will positively contribute toward and strengthen the achievement of desired goals. Why, then, has bioethics consultation been so often overlooked? Certainly one explanation regards the harmful false myths that continue to surround it, e.g. that ethics consultants are the “moral police” or “ethics gestapo” out to catch naughty doctors and nurses in the act of wrong-doing like some bratty, tattle-tale younger sibling, or that ethics committees are “death

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panels” out to “pull the plug on granny.” But a deeper, more subtle and arguably more important explanation pertains as well: bioethics consultation is relatively in its infancy, having only been properly birthed around the 1970s, and many physicians remain unaware of and fail to appreciate what it has to offer and how to properly take advantage of its services. As a field, it has yet to be properly legitimized by society: hard questions remain regarding standardization of education, credentialing, licensure, and so. All this before we even discuss its relevance to health care reform. And yet, and yet! Despite controversy within the field, the studies cited above clearly indicate that bioethics consultation is in fact relevant to reform nonetheless. Can it contribute to health care reform? Yes. The question of how is one that cannot be answered here definitively, but it is a question worth exploring and one that I hope will be asked and answered more frequently as the fierce debate over U.S. health care marches on ever forward.

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Ruddick, W. (1980). How can doctors and philosophers work together? In Ruddick, W. (Ed.), Philosophers in Medical Centers (pp. 1-11). Schneiderman, L., Gilmer, T., & Teetzel, H. D. (2000). Impact of ethics consultations in the intensive care setting: A randomized, controlled trial. Critical Care Medicine, 28(12), 3920-3924. Smith, J. C., & Medalia, C., U.S. Census Bureau, Current Population Reports. (2014). Health insurance coverage in the United States: 2013. Washington, DC: U.S. Government Printing Office. Spielman, B. (2001). Has faith in health care ethics gone too far? Risks of an unregulated practice and a model act to contain them. Marquette Law Review 85(161), 161-222. Swiderski, D. M., Ettinger, K. M., Webber, M., & Dubler, N. N. (2010). The clinical ethics credentialing project: Preliminary notes from a pilot project to establish quality measures for ethics consultation. HEC Forum 22, 65-72. Toulmin, S. (1981). The tyranny of principles. Hastings Center Report 11(6), 31-39. Walker, M. U. (1993). Keeping moral space open: New images of ethics consulting. Hastings Center Report 23(2), 33-40.

Hartman, M., Martin, A. B., Lassman, D., Catlin, A., & The National Health Expenditure Accounts Team. (2015). National health spending in 2013: Growth slows, remains in step with the overall economy. Health Affairs, 34(1). Jonsen, A. R. (1993). The birth of bioethics. Hastings Center Report 23(6), S1-S15. Kuhse, H. & Singer, P. (1988). Age and the allocation of medical resources. Journal of Medicine and Philosophy 13(1), 101-116. Nietzsche, F. (2000). Beyond good and evil. (W. Kaufman, Trans.). In W. Kaufman (Ed.), Basic writings of Nietzsche (179-436). New York, NY: The Modern Library. (Original work published 1886) 72 Volume II, No. 1

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A Conversation with Calamity: Shedding Light on the Plight of Syrian Refugees Danielle Wofford, RN PhD Student, Nursing and Health Innovation Arizona State University Tel: (406) 437-1903 Email: [email protected] James Shraiky, MARCH Director, InterSCT - The Interprofessional Studio for Complexity Thinking 1705 E. Pebble Beach Dr. Tempe, AZ 85282 Tel: (602) 740-7887 Email: [email protected] Tod Schneider, MS Director, Safe School Design 894 W. 4th Avenue Eugene, OR 97402 Tel: (541) 543-1774 Email: [email protected]

Author Note This research was supported by funding from the National Institutes of Health/National Institute of Nursing Research (NIH/NINR), award T32 1T32NR012718-01 Transdisciplinary Training in Health Disparities Science (C. Keller, P.I.). The content is the sole responsibility of the authors and does not necessarily represent the official views of the NIH or the NINR. Human subject approval was received from the Institutional Review Board on January, 28, 2015, # HRP-503a. The application included consent forms, user’s recruitment letters, and interview questions. There are no financial interests or conflicts.

Abstract Civil war has driven over 11 million Syrians from their homes. While over 6 million remain trapped within the nation’s borders, well over 4 million have fled to the five closest countries-Turkey, Lebanon, Iraq, Egypt and Jordan-- driving all five nations to a point of near saturation (Amnesty International, February 2016). Hundreds of thousands of more refugees continue to push farther north in search of safe haven, and this exodus shows no signs of abating. As a consequence, European nations are feeling overwhelmed on multiple levels, with their responses inconsistently coordinated and, in many ways, at risk of failing, both in terms of quality of service and in terms of capacity. Throughout the affected regions, refugees’ circumstances remain bleak and their quality of life continues to decline. The purpose of this research is: (1) to gain insights into the quality of services they are receiving, particularly in such areas as health, 74 Volume II, No. 1

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safety, education, shelter and ongoing support -- particularly from the refugees’ perspectives, (2) to gather refugees’ thoughts on how to improve their circumstances, and (3) to ultimately use this research to help design improved service and delivery options. This research adapts a seven-level social ecological model as a synthesizing framework for assessing refugees’ needs. The design for the study is qualitative, using grounded theory methodology. Three overarching themes which have emerged from the data collection process are: (1) Refugee Assets and Deficits, (2) Official Obstacles and Supports and (3) Unofficial Obstacles and Supports. Keywords: Syrian Refugees, Syria, Current Issues, Displacement Zones, Displaced Population, War, Vulnerable Population

Introduction On the morning of September 10th, 2015, along Turkey’s Bodrum Peninsula, the body of a young boy washed ashore. His family was fleeing the war in Syria by sea, when their smugglers’ small fiberglass boat capsized. The smugglers swam away, leaving their passengers to fend for themselves. The boy was Aylan Kurdi, two years old, and he did not die alone. His mother, Rehen, and his four-year old brother, Galip, drowned as well. His father Abdullah survived, spiritually broken. He told reporters, “Everything I was dreaming of is gone.” (Fanz & Schoichet, 2015). One such story is a tragedy that grabs the world’s attention, albeit briefly. Tens of thousands of such stories congeal into a grim statistic, blurring the human cost of Syria’s ongoing disaster. One goal of this proposal is to remain rooted in the human element and not to forget the hundreds of thousands of people like Aylan, his family and his friends, living and dying under horrific circumstances. But the Syrian diaspora is a complex, fragmented tragedy, with each facet deserving of attention. One obvious question that arises is: where should we begin? The war itself is a hornet’s nest of complications. For millions trapped within Syria’s borders, survival is unlikely, but escape is equally challenging (UNHCR, 2015). For those who reach other countries, finding shelter is quite difficult. The closest five countries are already overloaded, with hundreds of thousands of people pouring across their borders; more distant countries, while seeing far fewer refugees, are still scrambling to come up with cohesive plans for who to accept, who to reject, how to meet international legal obligations, how to respond with compassion, how to assuage the concerns of citizen groups resistant to accepting refugees, and beyond all of that, still address the very real, pragmatic challenges that come with suddenly taking in thousands of desperately needy individuals, while filtering out any who might pose serious threats -- and paying for it all (Kaye, 2010; UN, 2015; UNHCR, 2014). For those refugees who make it past all of these hurdles, there remain only glimmers of light at the end of the tunnel. Rebuilding their lives remains a monumental challenge, with no right to seek work, with inadequate health services, food, clothing, shelter or clean water, with sparse opportunities for children to continue their education, and with timelines in the years, and more likely decades, before any country will fully welcome them as immigrants (BBC, 2015; Norwegian Refugee Council [NRC], 2014; Rummery, 2015; UNHCR, 2013a). As with any crisis of such magnitude, nations of conscience are making an attempt to help, but the size and scope of the problem set the stage for scattered, frantic, underfunded

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interventions. At least five years into this crisis, European nations are still floundering to find a common path forward, and it is proving challenging (Kegels, February 2016). The supply of shelter and services just cannot keep up with the demand, and donor nations have dragged their feet in contributing funds. Jan Egeland, head of the Norwegian Refugee Council, was quoted as recently as November, 2015, saying that aid programs at that time were going nowhere, and that “the only thing we have is a half-hearted emergency relief plan that is not nearly enough to meet the needs of the refugees.” With all of this as background, it is no surprise that attention to both fundamental capacity and quality of service, appears far from adequate. At the same time, there is hope. The international community pledged $2.9 billion to the U.N. to address the Syrian refugee crisis in 2015. Unfortunately, less than half of those promised funds were actually delivered. But an international conference held on February 4, 2016 generated a new promise of $10 billion, including $7 billion this year in immediate humanitarian aid, both in Syria and in host countries, and $5 billion more over the four years that follow. This is an immense contribution that will undoubtedly make a difference – if the funds arrive as promised – and if the funds are used in a productive manner (UN, 2016). As impressive as that amount may sound it is apparently just a down payment; the World Bank believes a fully effective ten year Marshall plan for the region is really what is needed, upping the costs dramatically, to “$170 billion over 10 years to rebuild Syria...” (Laub, 2015). Of course, that assumes an enduring peace is first achieved. While visiting the Za’atari refugee camp in Jordan, Filippo Grandi, the United Nations Refugees Chief, called for “greater international efforts to end the world’s worst humanitarian crisis.” (Dunmore, 2016). The World Bank highlights the need for “bold and new ideas for helping Syrian refugees ” (Gazzar, 2015). Our proposed research project takes these pleas to heart, but with cautious pragmatism. We have high hopes that countries will make good on their pledges, and that those funds will be used well. At the same time, it is important to acknowledge that international aid efforts have a long, rocky track record, with at least as many failures as successes. One of the lessons that agencies have been slow to acknowledge is that imposing solutions from an outside perspective, with minimal regard for the insights of those who are most intimately impacted, almost inevitably lead to disaster (Easterly, 2006). The purpose of this investigation is to bypass political filters and engage directly with refugees in many of the affected areas, in formal camps as well as other settings, (1) to gain insights into the quality of services refugees are receiving, particularly in such areas as health, safety, education, shelter and ongoing support, (2) to gather their thoughts on how to improve their circumstances, and (3) to ultimately use this research to help design improved services and delivery options. We initiated this project using a Grounded-Theory approach, the essence of which is to gather data first, and only then formulate conclusions about the situation (Corbin & Strauss, 1990). We furthermore intentionally framed our questions from multiple, open-ended perspectives, specifically to avoid taking too narrow a view of the situation, succumbing to researcher, media or political bias, and prematurely jumping to conclusions regarding the situation we were investigating. A seven-level Social-ecological model provided us with these multiple, open-ended perspectives. The purpose of this endeavor was to explore current issues facing Syrian refugees, as narrated by refugees and aid workers, in displacement zones within Turkey.

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Syria and the Conflict For the past five centuries, Syria has experienced internal and external conflicts, beginning with the invasion of the Ottoman Empire in 1516. The Ottomans ruled the region for over 400 years until the Kingdom was expelled in 1918, when British forces captured the Syrian capital, Damascus (McHugo, 2015). Two years later the Sykes-Picot Agreement was signed between Britain and France; the contract granted both nations’ governments control of several regions of the Middle East. The British gained the majority of Iraq and the southern parts of Palestine and Jordan while the French controlled Syria, Lebanon, Alexandretta, and other portions of southeastern Turkey (Barr, 2011). The French mandate over Syria lasted until 1943, and the last French troops left the area in 1946. Syria’s culture and economy prospered for the following three decades until Hafiz Al-Assad, who was the prime minister, revolted against the government, and became the new president (McHugo, 2015). Ruling with an iron fist and following communist Eastern European leadership ideologies, Syria became the region’s most watertight police state, with a mix of military agencies and spy headquarters (Ariosto, 2012). The quality of life continued to decline until Assad died in 2000, and his son, Bashar, became the president. As a product of boarding schools in the United Kingdom, Bashar introduced contemporary western-based lifestyles to Syria. During the first five years of his presidency, he attempted to decouple his father’s anarcho-syndicalist strategies and open Syria’s economy to the world. However, his father’s cabinet remained in power and the quality of life for the Syrian people continued to decline (Lesch, 2012). Influenced by the Arab uprising in Tunisia and Egypt, Syria’s political turmoil erupted in March of 2011 when a group of teenagers painted revolutionary slogans on a school wall. The incident inspired protests throughout the country; the Syrian Army controlled the majority of demonstrations by dividing protesters, and killing many (Erlich, 2014). The government reaction led to years of violence and unrest that steadily spread nationwide and allowed for the infiltration of foreign separatist groups. Today, there are at least nine militant groups operating inside Syria, not including splinter factions, along with a number of foreign nations whose aerial bombings have only added to the largely indiscriminate killing (Zavadski, 2014).

Current State of Syrian Refugees The United Nations considers the Syrian refugee crisis the “biggest humanitarian emergency of our era,” and the civil war one of the worst moral crises of modern history (UNHCR, 2014). This new and unprecedented exiled group is the world’s largest refugee population under the UN’s mandate; their displacement is the worst exodus since the Rwandan genocide over 20 years ago (UNHCR, 2013b). It is estimated that 7.6 million Syrians are internally displaced. At least 4.5 million have fled to just five neighboring countries: Jordan 635,324+, Iraq 245,022, Turkey 2.5M+, Egypt 117,658+ and Lebanon 1.1M+ (Amnesty International, 2016). Over 4.7 million refugees have registered in host countries (Syria Regional Refugee Response Inter-agency Information Sharing Portal c); how many have failed to register is anyone’s guess. Many reside in refugee camps, but others find shelter wherever they can, under bridges, along riverbanks, doubled up in overcrowded tenements or squeezed into any other available spaces.

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The existing immigration, political, and environmental approaches in all of the countries involved are struggling to rise to the level of the demand, in terms of both capacity and quality of service. Due to the complexity of the issues, aid organizations are overwhelmed and struggling to effectively allocate scarce resources; the situation is growing more acute with no end in sight (UNHCR, 2016). A literature review of current issues facing Syrian refugees revealed major health, education, employment, social, and political challenges.

Health Issues Syrian refugees living in neighboring countries frequently appeared to suffer from significant mental health problems, including PTSD, depression, and psychosomatic issues. A study in a refugee tent city near the Syrian border revealed 33.5% of the population suffered from PTSD; being a female with a past diagnosis of a psychiatric disorder and experience of two or more traumas predicted a 71% chance of having PTSD (Alpak, et al., 2014). Children were found to have staggering rates of mental health problems. In one camp, an assessment on children revealed 60% had symptoms of depression, 45% PTSD, 22% aggression, and 65% psychosomatic symptoms which had a serious effect on children’s level of functioning (Özer, Sirin, & Oppedal, 2013). A growing number of reports stress the desperate need for mental health care tailored to: (1) the culture and (2) to specific needs of war survivors. Short-term medical mission groups working at refugee camps to relieve the tremendous burden on the local health care system report that physicians each see an average of 40 patients per day (Alghothan, Algothani, & Atassi, 2012). Surveillance of epidemiologic rates emphasize poorly controlled chronic diseases (such as hypertension and diabetes) and inadequate health care for women and children. Cutaneous leishmaniasis (CL) is on the rise among refugees and local communities near refugee camps. CL is a parasite that can lead to disfiguring painful ulcers on the skin. The parasite is spread through sand-fly bites and emphasizes the unhygienic environment of the refugee camps (IncI et al., 2015). More serious and life threatening is the emergence of meningococcal meningitis serogroup B. The WHO (2016), defines meningococcal meningitis as a bacterial infection spread by saliva (kissing, sneezing, sharing utensils) which can lead to severe brain damage or death in 50% of cases. An 11-year-old Syrian refugee girl residing in Turkey was diagnosed with this serious infection; she lived after antibiotic treatment (Tezer, Aslinur, Saliha, Belgin, & Dilek, 2014). Tezer et al., continue, advising that the immunization for this specific B strain is not given in Turkey, raising a concern regarding the need for vaccinations for refugees entering the country (2014). Difficulty obtaining access to care is the primary theme underpinning health issues.

Refugees in one host country are allowed to reside for two years, but work permits are extremely difficult to obtain, leaving a high unemployment rate among refugees. While significant inflation in food prices and housing costs has occurred in Turkey since the Syrian conflict began, the effects of employment rate changes among the local Turkish population are conflicting (Akgündüz, Van den Berg, & Hassink, 2015)(Karakoç & Doğruel, 2015). Syrians fortunate enough to find work are employed without proper paperwork, and the majority only find work in low skill, low pay, physically demanding jobs. Karakoç & Doğruel report an interview of a local citizen regarding Syrian refugees, “We also have people who have come from Syria in our village. Poor and frightened, they have settled in vacant properties and work as labourers in the fields for a low wage.” In these dark times for refugees, children and young women are sold as brides in hopes that they will be provided food and shelter. “In fact they get married for so little money, even for one gold bracelet. The families do it to save the girl from poverty, and give the girl away to marry, saying, ‘as long as she has food in her stomach ... ‘ ” (Karakoç & Doğruel, 2015, p. 359) It is not a surprise that with limited resources for refugees, the amount of illegal drug trafficking in Turkey has increased by 85% since the Syrian conflict began (Arslan, Zeren, Çelikel, Ortanca, & Demirkiran, 2015). These facts highlight the complexity of the workforce issues facing refugees and the host country.

Societal and Political Issues Host countries have become increasingly weary and distrustful of immigrants. One local resident recalls her response to seeing Syrian refugees at the airport: “My attention was drawn to the brown spots on their shoes. This scared me” (Karakoç & Doğruel, 2015, p. 362). Karakoç & Doğruel’s (2015) interviews of local citizens and Syrian refugees focused on “human security.” Their report suggests that Turkey’s political stance on Syria has resulted in negative repercussions involving economic and political insecurities for both local citizens and refugees. Local women complain of their husbands taking on second and third wives or concubines from the vulnerable Syrian population. Relationships are increasingly brittle due to differences in social and political views between different religious sects of Sunni, Alawite, Arab Christian, Armenian Christian, and numerous minority religions throughout the region. Violence between refugees and host countries receives local media coverage, compounding an atmosphere of insecurity.

Framework and Methodology

Education School for children is optional. One country hosting refugees assigns locals to teach in refugee schools, which compromises the schooling’s effectiveness due to language barriers. Lack of supplies and books in Arabic further limits the children’s learning. Tents are small and children must come in shifts to accommodate the limited space. “In the media, the Syrian children are often described as ‘The Lost Generation.’ We would say they are the generation that has been robbed of their lives by a monster of war that most governments in the world – including Syria’s –have promised them the right to be protected against” (Özer et al., 2013, p.38).

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The design for the study is qualitative, using Grounded Theory methodology. As mentioned in the introduction, a seven-layer social-ecological model helped avoid approaching the topic from only one perspective, while maintaining the integrity of the Grounded Theory approach by keeping the inquiries broad enough to avoid premature conclusions. Refugees and aid staff interviews served as the main data sources. Semi structured interviews followed Simons-Morton, McLeory, and Wendel’s (2012) revised social ecological model as a guiding framework for investigating refugees’ needs (figure 1). Social ecological models are fundamental guiding frameworks for investigating complex research questions that cross multiple and diverse environmental factors. They are used as heuristic tools for assessing the impact on individuals and behaviors, on several micro and macro societal levels. Typically, there are five

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nested levels; individual, interpersonal, community, organizational, and policy (The Center for Disease Control, 2015). Simons-Morton, etal (2012) added two more layers: (1) the physical environment and (2) the culture, due to their significant influences in the larger ecological system. Additionally, the development and the behavior of individuals can also be understood in the context of their backgrounds and the environments in which they live (Simons-Morton, B., 1 McLeroy,Figure K & Wendel, 2012).

Refugees (n=36), staff of Non Governmental Organizations (n=12), and health care providers (N=17), who currently reside within displacement zones adjacent to Syria, were invited to participate in (36) semi-structured interviews and (14) focus groups. Interviews were held in private rooms within displacement zones, NGO offices, and health centers. Recruitment letters were distributed through NGOs’ and health centers’ databases. Inclusion criteria encompassed male and female refugees between the ages of 18-80, who had resided within the host countries for at least six months. We also included children ages 6-17 in the presence of a parent or legal guardian. Individual interviews began with a review of the IRB’s paperwork and signing consent forms. Interview questions were categorized according to the seven layers of the social ecological model and focused on the overall displacement experience, starting with the individual interviewees’ typical previous lifestyles in Syria, continued with descriptions of their war experiences, and concluded with their life experiences in host countries. Examples of questions include: “Can you describe your life prior to the war?” “What happened when the war started?” “What made you leave your home?” “Would you describe, in detail, your current life?” and “What are the top challenges you face?” Similar questions were asked in the focus groups. The interviewer invited participants to add and build on each other’s responses. NGO members and health care providers were asked about challenges they had encountered, particularly in terms of barriers to delivering services. They were also asked about their perceptions of issues facing refugees. Examples of questions include: “What is the purpose of your organization?” “What types of services do you provide?” “What are the challenges you face?” and “What are the top issues facing the refugees you have served?”. Follow-up questions explored the impact of policies, culture, community, and organizational activities on the refugees’ experiences in host countries. All stakeholders were encouraged to build on each other’s answers.

Figure 1. Simmons-Morton, et. al (2012) Social Ecological model highlighting the two additional layers The individual level includes the refugee’s background and specific characteristics, such as age, religion, ethnicity, health status, and economic status, which may affect behavior and well-being in displacement zones. The interpersonal level is concerned with the impact of social systems on refugees, such as family, friends, and religious networks. The organizational level outlines the rules and regulations of service organizations such as GO’s and NGO’s while evaluating their quality and performance. The community level outlines the relationship between refugees and navigation among service organizations such as NGOs, health departments, schools, transportation systems, and religious institutions. The environment is the context where refugees live; whether a geographical location, the natural world, or the built environment. The culture layer discusses models that address social norms and outlines how refugees may meet their cultural needs. The design for the study is qualitative, using semi-structured interviews and observational methods. It follows Simons-Morton et al. as a synthesizing guide for researching existing studies and guiding the literature review process. We used terms from the seven layers as key search terms to review the current state of Syrian refugees. Authors then reviewed best practice examples of refugee camps, service models, and displacement outcomes. Results of literature reviews are highlighted in previous sections. Based on the limited body of knowledge, the authors created a research protocol that was reviewed by the Institutional Review Board (IRB) and determined exempt. The authors travelled to three countries that border conflict zones to conduct the study. 80 Volume II, No. 1

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Data Analysis Individual interviews, observation and field notes, along with focused group interviews, were transcribed. Due to safety concerns and strict confidentiality requests, all identifying information was removed from the transcripts and data sources. Numbers were substituted for all geographical locations, including the identities of countries and displacement zones. NGOs and health centers’ affiliations were substituted with Latin Alphabets; pseudonyms replaced refugees’ and providers’ identities. Each data source was individually analyzed and open-coded by authors. Keywords, lexicons, sentences, and paragraphs generated new codes. Authors’ individual codes were discussed, refined, and redefined through continuous comparison and reviews of data sources. Following Miles and Hubermann’s (1994) guidelines for building confirmability and trustworthiness in data analysis, authors spent substantial time referencing assumptions with transcripts as well as results from literature review.

Results Authors distilled responses into three overlapping and overarching themes: (1) Refugee Assets and Deficits, (2) Official Obstacles and Supports and (3) Unofficial Obstacles and Supports:

Refugee Assets and Deficits This theme addresses financial resources, connections and traumas brought along on refugees’ journeys. Our data show that the level of difficulty encountered by refugees attempting Journal of Health and Human Experience

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to settle in host countries, the speed and efficiency of the process, and refugees’ success in accessing support services, were all impacted by: (1) assets--the refugees’ own individual and collective resources, such as funds, personal health and stamina, level of mutual support, connections and ability to prepare, and (2) challenges--individual and collective handicaps or obstacles, such as injuries, illness, individual medical needs, individual psychological needs (especially depression and PTSD), the need for special family supports (i.e. children, the elderly, the disabled) fear of religious and political persecution, and lack of funds or connections. Those who were able to plan their exits from Syria and travel to border countries without any rush faced less anxiety and fewer obstacles in their migration journeys than those who lacked such advantages. Predominately, the former refugees were more financially comfortable than those who followed later. As one family member stated, “We knew the war is escalating, we knew death is inevitable, we sold our house and travelled here on a visitor visa. This was two years ago.” These families had ample time to search for housing in host countries and navigate through aid organizations and services. The same person continued, “. . . though our money might be running out soon. We don’t know how we may support ourselves afterward.” Another refugee stated, “I don’t have a lot of money to house my family.” This person noted one financial impact of the massive influx of refugees, area rents had gone up. “It is very expensive to rent a flat here. We can’t afford it.” Due to resource limitations, his family is living in his brothers’ onebedroom flat. “Ten children and four parents live in that cramped space.” Those who experienced chaos throughout their escape journeys also typically struggled with navigation after reaching host countries. One young refugee who lives in an urban setting stated, “I was drafted for forcible military service, I only had two weeks to decide; I either will have to fight with the government and possibly kill my friends and family members or, I have to escape somewhere else. I chose to escape.” He continued describing his experience of not knowing what to do, or where to go upon arriving. After he spent two weeks “renting a cheap hotel room” a friend of a friend connected him with a rental property for Syrian refugees. “I was excited to learn that six young Syrian men are living there and are trying to find jobs.” When asked about joining a refugee camp, he stated, “I have saved up enough money to find a job and support myself financially. I don’t need to join a refugee camp.” Another refugee, living in a town beyond the Syrian border, stated, “The day of my college entrance exam, I saw hundreds of armed soldiers marching towards my village. The family quickly packed and fled the same night. Our house was burnt the following day.” When asked, “Where did you go, and why?” he stated, “My uncle fled six months prior (and) rented an apartment. We called him and he hosted us for three months until we could stand on our feet.” Another refugee reflected on “how quickly we fled” when they heard that the Islamic State was approaching. Because of that, he couldn’t complete any paperwork and is “not allowed to legally work.” Finding work was a problem expressed by many refugees, with comments such as, “A big challenge for newly arrived refugees, and especially for those who don’t carry a passport, is employment.” Another refugee talked about the danger of living in a refugee camp because of political and religious backgrounds. He explained, “We may actually get killed because of our religious backgrounds.” Because the war has politicized religious differences, “It is perceived that each religion or denomination supports a specific group or government agency.” There is a fear of persecution by those who belong to opposing parties. He concluded, ”You may need to hide who you really are, or pretend to agree with people in order to survive in displacement zones.”

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Official Obstacles and Support This theme has multiple layers, starting with funding, acceptance of refugees and the establishment of camps, but it also extends beyond that: rules, regulations and policies have a notable impact on the degree to which the nation’s actions function smoothly, impeding or improving settlement. As mentioned earlier, despite the billions of dollars of international aid pledged in 2015, much of it reportedly never reached the GOs or NGOs on the front lines. This shortage has a major impact on both shelter capacity and service quality, undermining the ability to provide basics such as food and medical care, let alone anything more. The existing infrastructure in all host countries reached full capacity well before the time of our initial study, both in terms of quality of service and in terms of overall capacity, and there were no signs of quick, significant improvements on the horizon. Even where funding might be theoretically available, the engineering demands involved in creating cities overnight were clearly daunting. At least one camp saw its population grow by the tens of thousands over a period of months -- an extraordinary load for any established community to take on, let alone a municipality starting from zero. One NGO coordinator pointed out, “We were not ready to assist this massive number of asylees. We are overwhelmed.” This was supported by one of the refugee’s statements: “We can’t access any camp, they are all full, we are hoping and praying for a new temporary camp for us to live in.” Another refugee, who lives in an urban setting and is receiving assistance from a local NGO, stated, “They are understandably behind on assistance. There is too many of us here.” To make matters worse, beyond whatever funding and capacity were present, or basic structures and operations in place, refugees and service providers alike consistently remarked that rules, regulations and policies were exacerbating the problems at least as much as they were helping. For example, as discussed under personal assets and deficits, the paper chase for required documents was frustrating. One refugee stated, “Having your paperwork here determines everything. If you have a passport, your life will be easy. If you don’t, you will have to struggle through existing policies.” He pointed out several challenges that face refugees who don’t carry legal documents, including difficulty accessing camps, assistance, and miscellaneous services. “You can’t even get a phone without a passport here. You will get a temporary visitor phone chip for only two weeks, then the service will be disconnected.” When asked, “Why doesn’t every person get a passport?” he described the difficulty of obtaining legal documents inside Syria. “Remember, many of the refugees have never travelled outside of their countries and never held a passport before...obtaining a passport means travelling to areas where dangerous separatist groups exist. They may shoot you.” Another refugee, whose entire family except for himself carries passports, stated, “The law in this country allows me to stay here for only two months and forces me to leave the country for at least a month before I am allowed to enter again.” He explained the laws and penalties of overstaying his visa. “If a police officer stops me in the street, and he sees that I overstayed my visa, they will force me to pay thousands of dollars, or I will go to prison.” An NGO staff member noted, “The only way to obtain a refugee status is to live in refugee camps. If they are full, you are considered a temporary guest and must leave after several weeks.” She further explained that most asylum-seekers would have to leave their family members, travel to ISIScontrolled areas, and then obtain another visa to enter the country as guests. “This comeand-go cycle continues until families enter refugee camps.” A health care provider’s comment established the destructive impact of this policy on individuals who were ill. “If they are sick,

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this means they can’t receive care for a month, and those who survive and are able to return, they become more ill. More than a few acquire more health issues throughout their travels.”

are sick and require health services.” They refer, and sometimes transport, children who require medical attention.

One country provided ample opportunities for refugees who carry legal documents to temporarily integrate into the local community. One refugee stated, “I am one of the blessed ones, I have a passport.” He continued, explaining, “I was granted a visitor card that allowed me to work and receive free healthcare and education.” However, it was important to him to emphasize his continuing, underlying trepidation. “…I don’t know what will happen to me in the future--all of those who carry the card are not allowed to receive permanent residency here.”

Individuals admitted into refugee camps are considered “blessed for receiving financial aid from the government of the host country.” One former refugee camp resident stated, “However, the money is not enough, you need a job and the camp can’t offer employment.” He clarified the difficult process of entering and exiting the camp: “You need a written permit to leave the camp; the issuing process takes days or weeks. One NGO staff member stated, “Most refugees who reside in camps are talented and educated, and qualify for several available jobs.” Her co-workers felt that these policies “exacerbate the already desperate conditions in camps,” not only for the residents, but for family members who cannot access camps in order to find or connect with loved ones.

For Syrian healthcare providers, including nurses, physicians, and technicians, the policies for aiding refugees are sometimes helpful but come with challenges. In some surrounding countries, they are not permitted to deliver care. In others, they can do so, but with limitations. All such specialists, even where they are permitted to work with foreign aid agencies, can only triage, or treat minor ailments. Any patients who require specialty care cannot be treated directly. Instead, they must be referred to the host country’s health system. One Syrian pediatrician who works at a philanthropic clinic stated, “The law forces me to refer critically ill children to local specialists. In many cases, the patient gets lost in the system and does not receive care.” A gynecologist echoed this concern: “I can’t deliver babies, I can only check pregnancy progress. What if a mother needs emergency birthing? I will have to refer her to the emergency department.” She reflected on several cases she had observed. “In many cases emergency medicine staff are not trained in labor and delivery procedures.” An orthopedic patient whose ankle required several surgeries described his experience after he was shot in the leg by one of the separatist groups and managed to flee to a border town. “After I was hit, my foot was shattered. I needed care immediately; I was able to receive primary care from one of the physicians I know. However, I needed to see a local doctor for my surgery.” He spent weeks navigating the system. When he finally found an available provider and scheduled the surgery, the provider warned him, “I don’t have the appropriate surgical instruments to perform the surgery.” Funded by national and international NGOs, one of the most innovative impromptu, yet planned, health models is what refugees call “Healing House.” A healthcare technician described this facility as “a rented flat where sick refugees, who require long-term care, can reside under the supervision of a housemaster.” This novel concept was created shortly after the war in Syria when “the healthcare system in host countries could no longer support the acuity and the volume of chronic illnesses.” Refugees, such as those who suffer from shattered bones, bed sores or mental illnesses, were sometimes transported out of camps to reside in these houses. One health provider stated, “There is a health provider, such as nurses, doctors, and pharmacists, who will be present 24/7.” Additionally, physically and mentally challenged patients are transported out of war and displacement zones for long-term rehabilitation care. One NGO worker stated, “It is devastating for someone to lose movement in their body. When foreign providers visit the house, you see hope and determination in refugees’ eyes to work hard and get better.” One refugee, who lived in a healing house for three months, expressed his gratitude, saying “I didn’t think I could walk anymore. I am grateful for those doctors, who traveled from far countries, to help me heal and walk again.”

Unofficial Obstacles and Supports The final theme addresses concepts of corruption, crime, citizen support and the underground economy. Our data highlighted several unofficial obstacles, or counter-systems, that were obstructing the placement process, including bribery, corruption, and crime. We also identified unofficial supports, including outreach from friends, neighbors, ad hoc citizen groups, unapproved or underground support services, and the underground economy. One NGO member, a health care provider, and two refugees expressed that the most damning and harmful issue in refugee camps is corruption, particularly in the form of bribery. One former camp resident stated, “Even though camps provide a form of stability, there is a pecking-order to who receives aid and moves in and out the camp.” One patient, who is on a waiting list to enter the camp, stated, “I can’t afford entering the camp.” When asked, “What do you mean? Aren’t the camps free of charge?” he replied, “That’s what you hear from governments and news outlets.” He outlined a comprehensive system for acquiring tents or temporary housing in established camps following basic real-estate principles. “There are different prices for tents, starting at $1,000 for an area and up to $5,000 if the tent is large and in a prime location.” One health care provider pointed out that an average employee monthly salary in Syria is $150--not enough to pay fees to camp coordinators. “Some of the refugees sell all of their possessions to afford a tent.” Another former camp resident stated that other, already established refugees are also at fault. Some of the refugees who arrived shortly after the beginning of the war “have fake identification cards and occupy several tents. They sell or rent these tents to refugees who are on the waiting list.” One NGO member went into detail about the economic desperation refugees face that pushes them to do “anything to provide stable life for their families.” While it is illegal for non-residents to enter camps, three refugees stated that you could bribe the guard to gain entry. One refugee explained, “you can pay the guard $10 and they will let you in.” When asked why refugees would leave the camp, they explained that families are separated and want to reunite. His friend stated, “I left when I got a job.” He advised that only those who receive special permission, or who can afford to pay a bribe, manage to leave the camp, usually because they are working in the city. They often return, he noted, days or weeks later.

Service organizations were allowed to build make-shift schools in some displacement zones. As one NGO staff member stated, “School is helping children taste some level of normalcy.” Other staff members stated that the school system is allowing teachers to “identify children who

Several NGO staff and health care providers stated that the local economy and culture in border towns has drastically shifted. Local businesses employ undocumented individuals

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because “Syrians work harder than locals with the fraction of the fee.” One philanthropic organization volunteer who owns a local shop, asked, “Why not? This is good for my business.” Another refugee stated, “I need to live. I am willing to do any job.” The cost of living has increased 1,000%. One NGO coordinator advised that refugees “who can’t access camps have to rent flats.” One refugee explained, “When the war started, you could rent a large house here for $50. Now, you won’t even find a small studio for $500 a month.” Another refugee detailed the lucrative rental system here: many locals, who were not initially planning on renting their spaces, lease them for a large amount and relocate to other cheaper areas. One volunteer added that it was now sometimes difficult to find milk in grocery stores. “The population of our town is now triple.” Another refugee discussed the challenges he faces to find fresh produce and grocery products, explaining that when he does find them, “They are six times the actual price.” As a means of survival, several underground business were created by locals and by already established refugees to accommodate the growing demand for healthcare, food, shelter, services and documents. One NGO member warned, “Don’t ever leave your passport in the car.” He then described a comprehensive forgery system in which underground print shops reassign lost and stolen passports to new individuals. When asked about the validity of the story one refugee replied, “Of course, I can show you several shops. The price tag varies between $1,000 for an Arabic passport to $10,000 for a foreign one.” Another underground, though not subtle, business is cell phone hacking to get long term cell plans. Undocumented visitors are permitted to purchase two weeks of cell service. While strolling through markets, we kept seeing “phone breaking” signs. When asked about the nature of the business, one refugee spoke of a comprehensive phones modification system to permit “long term cell service.” The fee is $100 per phone, he reported. He went on to specify particular cell phone manufacturers whose products were easy to break-into and others that were impossible to modify. “Refugees,” he disclosed, “know what brand to purchase.” “Resources are being drained,” one NGO staff member reported. Financial support, medical equipment, and monetary help, including food and clothing are “being stolen by several distribution coordinators.” One health provider stated, “Someone, could be a refugee, an aid worker, a local, or anyone else, has stolen all the medical equipment from our healing house.” He continued outlining yet another black market for selling aid materials. Another NGO stated, “Everybody is desperate for help; many are pushed to desperate choices,” while others, by nature, “love to take advantage of any system.” One NGO lead observed that some of service centers that are funded by “rich countries” are rundown and inefficient because a “few employees are pocketing resources…it takes (only) one selfish person to drain any system.” There is a rising tension and divide among locals in border towns. Some residents are helping with the refugee conflict, while others see the displaced population as a burden on an “already broken system.” One health care provider reflected on the rising hostility towards refugees on the part of some of the locals, because even they could no longer afford the rising cost of living. He further pointed out that health centers are crowded, overwhelmed, and are delaying care to locals. One NGO volunteer, who is also a business owner, stated that locals believe that “Syrians continue to steal their jobs,” noting that fights had erupted at employment centers.

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Discussion The research process faced tremendous challenges. As a first step the authors relied on media coverage, agencies’ reports and scholarly journals (there are relatively few scholarly articles on the current state of Syrian refugees) for purposes of literature review and to establish a baseline understanding of the Syrian crisis. In 2015, following the literature review, we visited Syrian refugee displacement zones to conduct qualitative research, in the form of individual and group interviews of refugees and service providers. Utilizing a seven layer social-ecological model, we facilitated comprehensive interviews that covered a large spectrum of refugee needs. The research documented the daily struggles refugees face, ranging from meeting their most basic survival needs to coping with the stress of family separation, handling local antipathy toward refugees, and frustration with bureaucratic aid mechanisms. The seven-layer framework helped to illuminate multiple aspects of the refugee world, with findings that further mirrored what we read in our literature review. We then further distilled our findings into three overarching themes. The thematic findings largely reinforced what UNHCR, UN, UNICEF and other organizations have reported on Syrian Refugees’ experiences in host countries. However, the research efforts also contributed a more nuanced understanding, and helped to uncover aspects of the refugee experience that were rarely touched upon in literature, agency or media reports we reviewed--to a large degree because refugees hadn’t been asked directly for their insights. Three overall themes emerged: (1) Personal assets and deficits, (2) Official obstacles and support, and (3) Unofficial obstacles and support. The authors identified numerous personal assets and deficits to consider in humanizing the refugee population--factors worth considering when designing services on refugees’ behalf. It became clear that strengths and needs are individual, and services should adjust accordingly. Refugees come from all walks of life and have a much better understanding of what they need and what they can offer than any well intentioned outsider can offer. If services are to be functional for as many people as possible, this reality should be respected and incorporated into planning. The authors studied official supports and deficits in the region, finding a mixed bag of good intentions, begrudging responses, kindness and hostility. There was ample media coverage and other documentation regarding, simultaneously: (1) beefed-up national borders serving as settings for tense confrontations, with police or military troops on one side, desperate refugees on the other, and a growing wall of barbed wire in-between, and (2) a huge international effort, pledging billions of dollars in aid for refugees, inside and outside of Syria. Those funds, and other, private donations, are slowly finding their way into the hands of local governments and NGOs-with an end result that is immense in scope, but still insufficient in terms of catching up with the continuing demand, especially when various players along the delivery chain are apparently pocketing these resources. With all of that as background, in regards to those refugees who did manage to reach displacement zones in host countries, we also gathered considerable feedback on rules, regulations and policies that hindered the refugee settlement process. The authors also studied unofficial supports and deficits, with similarly mixed results. Interviewees painted a complex picture of ad-hoc resources and occasionally subversive systems. Individuals and citizen groups have done remarkable work on the front lines, rescuing refugees from sinking rafts, providing warm clothes, food and shelter. These good Samaritans have been generally operating on a shoestring, relying on donations through service groups or Internet requests. We also found that the refugees themselves, if given the chance, can design,

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pull together, or advocate for, innovative solutions. One solution in particular was the Healing House model. Another was the development of responsive and culturally appropriate schools in camps. Both examples were the products of refugee thinking, and both are worth emulating in future operations. On the darker side, there was unprecedented evidence of xenophobia and resentment among locals, especially as it pertains to employment opportunities. Details emerged regarding a black market in documents, and other types of corruption in displacement zones or otherwise within existing service systems. In addition to the three overall themes discussed above, two significant issues arose of particular note: (1) a need for anonymity and (2) the prevalence of corruption. Regarding anonymity: Although refugees were eager to talk, they uniformly insisted on anonymity, for fear of retribution against themselves or their family members, either on-site or back in Syria. The fear of persecution within host countries and from all separatist groups in Syria runs deep. This was unfortunate, as overt identification would have helped us classify results according to regional needs and would have strengthened the weight of our report and our scholarship, establishing much more specific contexts. But it was clear that this would have left interviewees feeling at-risk and betrayed, and would have undermined future qualitative research efforts. In response to these demands, they were assured of anonymity in regards to any and all identifying factors. This concern applied not only to people, but to places. Identifying locations could have put individuals in danger. To have frank discussions with service providers, as well as refugees, it was important to once again assure people that we would not betray their trust. An alternative would have been to simply ignore system shortcomings, accepting official versions of operations and using a quantitative research approach, rather than conducting qualitative research that might make waves or put people at risk. In this respect, accepting official versions of operations at face value clearly would have been the easiest route to pursue with participating entities, paving the way for easier future access, and it would have allowed us to name sites. Unfortunately this also would have generated much less useful data, glossing over controversies or areas that needed attention, and as a result might undermine the value of the research conducted. Hopefully, we found a middle way. Although we pushed the boundaries of research protocols in doing so, eliminating identifiers allowed gathering critical input without violating the trust of those who permitted access and, simultaneously, protected the safety of interviewees. A related sensitive topic was constructive criticism. Identifying shortfalls, incompetency, or areas needing improvement required considerable diplomacy. Arranging access to displacement zones where there was the potential for uncovering unflattering realities was challenging enough, and it was essential to establish a sufficient, continuing level of trust to gain entry not just once, but repeatedly, and in multiple locations. Word travels fast between displacement zones, and to embarrass one would undoubtedly keep us from visiting others. It was clear that in most cases, understandably, coordinators wanted to put the best possible face on their efforts, and were anxious about the possibility of research efforts morphing into exposés and uncovering wrongdoing. Even constructive criticism could create some anxiety, as its impact on individuals’ jobs, or funding for operations could not be predicted with confidence. In terms of funding, it is worth remembering that a good portion of service shortfalls could reasonably be laid at the feet of the international community, whose donations, as mentioned earlier, had yet to come close to promised levels. 88 Volume II, No. 1

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Regarding corruption: While many reports have reviewed the difficulties refugees face, most appeared to tactfully avoid discussing, or were truly unaware of, some of the issues tackled in our results. Specifically, we didn’t find official publications that addressed deep levels of corruption as standard operating procedures--particularly in terms of bribery. This is raised not at all with an intention of passing moral judgement, but as a pragmatic issue. No doubt, quite a bit of corruption ties directly to straight-forward greed, but that is not the whole story. Individuals who have been struggling to survive in failed states or repressive settings often find that primal fears and the drive to feed one’s family trumps the moral standards that are taken for granted under more comfortable circumstances. It is easiest to be virtuous when one knows where the next meal is coming from. In fact, the extent of corruption, or other criminal behavior, can even serve as a useful red flag—a reflection of the degree to which citizens don not feel that legal options are meeting their needs, or that there is an adequate safety net. Regardless of where one stands on the issue of corruption in terms of ethics, to sidestep a conversation on the topic would undermine the practical effectiveness of any assessment of refugee services or any attempt to realistically fine-tune plans for the best use of funding.

Next Steps and Recommendations This initial research barely scratches the surface in terms of what more can be researched or what solutions might be applied. Further research efforts on the core issues discussed in this paper, including improved habitat, health, education, safety and, equally important, long term approaches that help refugees move forward with their lives, are clearly needed. In addition, focused attention on the following topics can present new ideas worth considering:

Leveraging Informal Supports In every nation touched by the exodus, individual citizens have extended themselves in a variety of approaches. They have offered free food, clothing, shelter and entertainment. They have helped rescue refugees from capsized rafts, or helped pull them ashore. While media coverage of these acts of kindness has occurred, no formal research has attempted to look more closely at this phenomenon, to see what potential citizen-initiated actions might hold for improving a nation’s response to any future influx of refugees, and how nations might benefit from supporting those actions. (For example, nations have the ability to buy in bulk, eliminate tariffs, waive housing density requirements, or permit camping on public land, while citizens have the flexibility to respond where needed at little or no cost to governing bodies.)

Rethinking Structures Within, and Layout of, Refugee Camps There are a number of international entities with tremendous experience and know-how regarding establishing refugee camps, and they deserve appreciation and respect for their dedication and their efforts--building entire tent cities overnight is a superhuman feat. There are even a few camps that have received good press for cleanliness, security, schools or job training. But unfortunately the list of model camps appears to be short. Paradoxically, despite these phenomenal efforts, the consistent message we received from refugees and front-line workers alike was that no one was truly happy with any such habitats. Some refugees suggested eliminating them entirely. On top of the initial designs, assessment of camps is complicated by very different management styles and power dynamics in different locales, ranging from authoritarian to participatory and many points on a spectrum between the two. In follow-

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up, designs and operating procedures are well worth a constructive review by fresh eyes, with different perspectives and skill sets. In line with the transdisciplinary approach to problem solving, a review team might include not only civil engineers, but architects, seamstresses, artists, counselors, advocates and, most especially, refugees. Every aspect of the camps is worth exploring, including not only such basics as the number of tents per latrine, or how to expand to accommodate overflowing demand, but more nuanced components such as differentiation of spaces for a greater variety of functions, including privacy, small and large group gatherings, spiritual comfort, health care, child care, job training, education and the arts. A functional sewage management system is critical, but so is access to electronic equipment (specifically for internet communication, digital outreach for support, distance-learning and entertainment). Other topics worth mulling over include camp security against external threats, and personal safety within the camp; a functional and trustworthy criminal justice component; selecting ideal locations, equipment and staffing for on-site schooling; adequate on-site medical facilities; adequate access for emergency vehicles as well as maintenance vehicles (for water, sewage, delivery, ambulances); mail services; and sustainability in terms of site management and power sources. Research may explore practical engineering approaches to solving camp challenges, such as construction materials, mud control, sanitation and power sources, but it can also address overarching themes, such as ethical considerations in camp design, starting with the common use of Spartan shelters, barely adequate for short-term use in mild weather, as long-term, dysfunctional mass housing under the worst of conditions, clustered into demoralizing, semipermanent purgatorial city-states.

Examining Implications for Use of Space External to Refugee Camps Many refugees find work and housing within host countries outside of official camps, and consider it a preferable arrangement. This is a relatively unexplored area for research that might look at the impact on habitability standards, public health and safety, as well as the advantages and disadvantages that come with ignoring or embracing this new wave of immigrants. Ultimately it might explore possible new models of affordable shelter, public sanitation resources, (such as toilets and handwashing facilities), and health care services, (including vaccinations and emergency services) outside of refugee camps.

General Recommendations Some general recommendations for improving the quality of life, derived from refugee interviews, center on creating new overarching models to help refugees navigate through the displacement journey, to settle and find fulfillment in host countries. Many refugees’ testimonies reinforced a desperate need for aid in the migration process at countries’ access points. The majority of our subjects pressed us to eradicate the existing refugee camp system entirely and generate new models that allow refugees to thrive. Whether peace comes to Syria sooner or later, the overall sentiment expressed by refugees is that they would love to go home. But as much as all would like to see safe repatriation, bringing peace to Syria is far beyond the scope of this research paper. It would be immensely helpful to see a political resolution to the Syrian conflict that allows refugees to return to and rebuild their lives in their home country, which now lies in ruins. In the meantime, whether the current crisis drags on for decades, which seems likely, or manages to find a quick resolution, the questions that have surfaced as a result of the Syrian disaster will remain, and will be relevant to similar

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crises around the globe in the decades to come; constructive solutions will be of immediate value in addressing the current crisis and, in addition, should yield insights into how the international community can better tackle such challenges in the future. In all such cases, preventive, peacemaking actions that keep future refugee crises from developing will always be preferable to post-apocalyptic repair work. Unfortunately, our track record as a species suggests that we should not count on this becoming the norm anytime soon. In the meantime, our next steps will focus on establishing partnerships and applying for research funding to further investigate specific, pragmatic solutions. We plan on continuing with our Grounded Theory approach, using the same Social Ecological model as a tool for maintaining multiple perspectives while gathering further data. The latter approach provides a safeguard against becoming too narrow in our perspective, and thus in our proposed solutions, while allowing us to simultaneously maintain a focus on pragmatic action. Ultimately, our intent is to use refugee input to help craft implementable interventions such as improved or new spaces, programs, and systems that can transform the quality of refugees’ lives in host countries.

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BBC. (2015). Syria refugees: UN warns of extreme poverty in Jordan - BBC News. Retrieved from http://www.bbc.com/news/world-middle-east-30815084 Corbin, J. M., & Strauss, A. (1990). Grounded theory research: Procedures, canons, and evaluative criteria. Qual Sociol Qualitative Sociology, 13(1), 3-21. Dunmore, Charlie (2016). UN refugee chief urges focus on Syria crisis during Jordan visit. Retrieved from http://www.unhcr.org/569d17876.html Easterly, W. (2006). The white man’s burden: Why the west’s efforts to aid the rest have done so much ill and so little good. New York: Penguin Press. Erlich, R. W. (2014). Inside Syria: The backstory of their civil war and what the world can expect. Amherst, NY: Prometheus Books. Fantz, A., & Schoichet, C. E. (2015). Drowned Syrian boy’s dad: Everything is gone. Retrieved from http://www.cnn.com/2015/09/03/europe/migration-crisis-aylan-kurdi-turkeycanada/ Gazzar, B. (2015). Should the U.S. stop accepting Syrian refugees in light of Paris attacks?. Retrieved from http://www.dailynews.com/general-news/20151116/should-the-us-stopaccepting-syrian-refugees-in-light-of-paris-attacks Laub, K. (2015). New ideas to tackle Syria refugee crisis: Investing, not aid. Retrieved from http://bigstory.ap.org/article/cbd0458f41b0487e865389847c0b9679/new-ideas-tacklesyria-refugee-crisis-investing-not-aid Inci, R., Fatih, I. M., Ozturk, P., Mulayim, M. K., Ozyurt, K., & Alatas, E. T. A. (2015). Effect of the Syrian Civil War on Prevalence of Cutaneous Leishmaniasis in Southeastern Anatolia, Turkey. Medical Science Monitor, 21, 2100–2104. http://doi.org/10.12659/MSM.893977 Karakoç, J., & Doğruel, F. (2015). The impact of Turkey’s policy toward Syria on human security. Arab Studies Quarterly, 37(4), 351-366. Kaye, J. (2010). Moving millions: How coyote capitalism fuels global immigration. Hoboken, NJ: Wiley Press. Lesch, D. W. (2012). Syria: The fall of the house of Assad. New Haven, CT: Yale Univ Press. McHugo, J. (2015). Syria: A recent history. London: Saqi Books. Miles, M. B., & Hubermann, A. M. (1994). Qualitative data analysis: An expanded sourcebook. Thousand Oaks, Calif.: Sage. Norwegian Refugee Council. (2014). A precarious existence: the shelter situation of refugees from Syria in neighboring countries. Retrieved from http://www.nrc.no/arch/_ img/9179861.pdf 92 Volume II, No. 1

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Özer, B., Sirin, S. & Oppedal, B. (2013). Bahcesehir Study of Syrian Refugee Children in Turkey: Bahcesehir University. Retrieved from: http://www.fhi.no/ dokumenter/4a7c5c4de3.pdf. Rummery, A. (2015). Loss of hope and deepening poverty driving Syrians to seek refuge in Europe. Retrieved from http://www.unhcr.org/560558b06.html Simons-Morton, B., McLeroy, K & Wendel, M. (2012). Behavior Theory in Health Promotion Practice and Research. Jones & Bartlett: Sudbury, MA. Tezer, H., Ozkaya-Parlakay, A., Kanik-Yuksek, S., Gulhan, B., & Guldemir, D. (2014). A Syrian patient diagnosed with meningococcal meningitis serogroup B. Human Vaccines and Immunotherapeutics, 10(8), 2482. http://doi.org/10.4161/hv. 289 51 United Nations [UN]. (2015). Syrian refugee numbers pass four million as war rages on. Retrieved from http://www.un.org/apps/news/story.asp?NewsID=51368#. VobjBZMrJp8U United Nations [UN]. (2016). Record $10 billion pledged in humanitarian aid for Syria at UN co-hosted conference in London. Retrieved from http://www.un.org/apps/news/story. asp?NewsID=53162#.VsulQygrLIU United Nations High Commissioner for refugees [UNHCR]. (2014, August 29). Needs soar as number of Syrian refugees tops 3 million. Retrieved from http://www.unhcr. org/53ff76c99.html United Nations High Commissioner for refugees [UNHCR]. The future of Syria: Refugee children in crisis. Retrieved from http://unhcr.org/FutureOfSyria/the-challenge- ofeducation.html United Nations High Commissioner for refugees [UNHCR]. Total number of Syrian refugees exceeds four million for first time. (2015, July 9). Retrieved from http://www.unhcr.org/559d67d46.html United Nations High Commissioner for refugees [UNHCR]. (2013b).UNHCR chief urges states to maintain open access for fleeing Syrians. Retrieved from http://www.unhcr.org/51e55cf96.html United Nations High Commissioner for refugees [UNHCR]. (2016). UNHCR Syria Regional Refugee Response. Retrieved from http://data.unhcr.org/syrianrefugees/regional.php The Center for Disease Control [CDC]. (2015). Social Ecological Model. Retrieved from http://www.cdc.gov/cancer/crccp/sem.htm World Health Organization. Meningococcal meningitis. (n.d.). Retrieved February from http://www.who.int/mediacentre/factsheets/fs141/en/ Zavadski, K. (2014). A Guide to the Many Groups Fighting in Iraq and Syria. Retrieved from http://nymag.com/daily/intelligencer/2014/10/guide-groups-fighting-iraq-and-syria.html Journal of Health and Human Experience

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Special Commentary Conducting Research with Limited Resources Julie K. Zadinsky, PhD, RN Assistant Dean for Research PhD Program Director College of Nursing (EC-4513) Augusta University 987 St. Sebastian Way Augusta, GA 30912 Office: (706)721-2469 Email: [email protected] Margaret Barton-Burke. PhD, RN, FAAN Professor Emeritus, University of Missouri St. Louis and Director, Nursing Research Memorial Sloan-Kettering Cancer Center 205 East 64th Street Room 251 Concourse Level New York, NY 10065 Office: (646) 449-1074 Email: [email protected]

Author Note The opinions expressed in this article are solely those of the authors and do not represent the opinions of their employing organizations. The authors previously presented an American Association of Colleges of Nursing (AACN) webinar on this topic. Also, Drs. Barton-Burke and Zadinsky presented this topic at a Sigma Theta Tau Biennial meeting in Baltimore, MD and at a Sigma Theta Tau Beta Omicron conference in Augusta, GA, respectively. The authors have no conflicts of interest.

Introduction Much is written about the challenges of research productivity (Conn, 2010a, 2013; Conn, Porter, McDaniel, Rantz, & Maas, 2005; Nolan et al., 2007; Smeltzer et al., 2014a, 2014b). In the academic and clinical settings over the past several years, faculty have experienced restricted intramural funding with declining university budgets and decreasing endowment funds. At the same time, the workload for researchers without funding has been increasing. Grants are the usual way to fund research activities, and grant writing requires a significant time commitment to be competitive. The competition for extramural funding is fierce, with low success rates making it harder than ever to obtain extramural funding and build a program of research. Only a small percentage of federal research grant applicants receive funding, increasing faculty dissatisfaction with the grant development process (National Institutes of Health, 2014). With dwindling intramural research funds, little to no health system research funds, and an extremely competitive extramural environment, researchers in both academic and clinical environments should consider alternative ways to fund and conduct research. The purpose of this commentary is to discuss strategies that the authors have found useful when conducting research with limited resources. Keywords: research, research funding, grant writing, academic publications

Go Slow to Go Fast Damian Pitts (2016) refers to the importance of “... the ability to slow things down at half speed to improve situational awareness before moving forward” (p. 4). In fast-paced and stressful work environments, researchers need to slow down and decrease stress to increase their situation awareness related to planning research activities. Situation awareness refers to being aware of what is happening around you and understanding what the knowledge and information in your current situation means to you now and the implications they have for the future (Endsley, Bolte, & Jones, 2003). Situation awareness enables you to process real-world, constantly changing knowledge and information in such a way that you can make effective decisions and take appropriate actions. This includes knowledge and information related to your ongoing research activities and overall program of research. Stress, including stress in the current research environment, impairs situation awareness in such a way that it becomes difficult to think about planning your research. For example, symptoms of impaired situation awareness include decreased short-term memory; a syndrome of increased workload anxiety, fatigue and other stressors (WAFS); and data overload (Endsley, Bolte, & Jones, 2003). With impaired situation awareness, one can experience complexity creep as well as attentional tunneling – that is, fixating on only a limited set of all the information vying for attention (Endsley, Bolte, & Jones, 2003). This makes it difficult, if not impossible, to engage in effective research planning. Slowing down improves situation awareness and thus enables one to be more effective in planning research. Start planning by considering the Why, What, Who, Where, When and How of your research program (see Table 1). Think through the following questions, beginning with the purpose of your research: Why do you want to engage in research? What should be the focus of a research project that can move you to the next level of your research program? Who will be impacted by the research? Is your research question significant and innovative, and will it

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have a major scientific impact? Where are the gaps in capabilities and resources needed for your research? When should you expect to arrive at your major milestones in your research program? Finally, how can you work most effectively and efficiently? Table 1. Research Planning Considerations ´  Why do you want to engage in research? ´  What should be the focus of a research project that can move you to the next level of your research program? ´  Who will be impacted by your research? Is your research question significant and innovative, and will it have a major scientific impact? ´  Where are the gaps in capabilities and resources needed for your research? ´  When should you expect to arrive at your major milestones in your research program? ´  How can you work most effectively and efficiently?

Think Efficiency and Cost-Effectiveness Building a research program is a lifelong commitment. Therefore, selecting a fundable research topic that you are passionate about is important. Ensure that the research has scientific impact; that is, it should have the potential to make a broader impact than simply answering a research question (Cohen et al., 2010; Conn, 2010b). Review funding agencies’ priorities and speak with their program or project officers to determine if your proposed research topic is fundable through their organization. There are a variety of ways to investigate different aspects of a research program. For example, in breast cancer research one can study the genetics of the disease, the side effects or symptom management, or one specific researchable area like lymphedema. Consider multiple funders who have an interest in your research topic and might fund aspects of your work. This type of thinking is an efficient way to consider funding your research. Think creatively. Consider a gap in completed research or what still requires investigation on a particular topic, and add to the body of scientific knowledge. Build on existing programs of research by working with a robust, interdisciplinary research team.

Build Your Team

Think strategically about a collaborative research team, and partner with colleagues outside your discipline. Meanwhile, maximize the benefits of collaborations inside your team. Examples of such benefits include sharing or transferring knowledge, skills and techniques; crossfertilization of ideas that may generate new perspectives; and connecting with other researchers’ scientific networks (Bozeman, Fay, & Slade, 2013; Katz & Martin, 1997). When selecting your research team, consider team members’ characteristics that will influence team effectiveness (Stokols, Misra, Moser, Hall, & Taylor, 2008). For example, look for team members who have mutual respect and openness to other disciplinary perspectives as well as those who have had good experiences with others on previous interdisciplinary projects. As a team leader, focus on participatory leadership that empowers others to take an active part in your research team. Additionally, think about how to avoid the five potential dysfunctions of a team (Lencioni, 2002). First, focus on building a trusting team in which team members believe that their peers’ intentions are good and that there is no reason to be protective of oneself in the group. This will enable team members to appreciate and tap into each other’s skills and experiences. Second, create an environment in which your team feels comfortable engaging in productive conflict. This is essential for discussing critical topics and learning about each other’s ideas. Third, create clear direction and priorities to foster commitment, encouraging everyone to put their opinions and perspectives on the table so the team can confidently commit to a decision. Fourth, insist that team members hold each other accountable. Team members need to establish mutual respect and identify potential problems quickly. Each member of the team needs to be willing to identify performance or behavior that may hurt the team. Fifth, focus on specific team objectives and outcomes to help team members move toward and value their collective results.

Engage Students in Your Research In academia, student engagement yields both tangible and intangible rewards while moving your research forward. In clinical settings, working with a student who requires a research residency can yield the same rewards. Students from a variety of disciplines and from various academic levels, such as baccalaureate, masters and doctoral programs, can make valuable contributions to your research activities. Design a course that you teach to include projects related to your research so students can participate and contribute to the work. For example, baccalaureate students can assist with literature searches and review of the literature. Service learning projects can include students working with you on your research-related initiatives like developing assessment or demographic forms. In some cases, undergraduate or graduate students can collect data as part of a course assignment, and students from the psychology or other departments can code research data, input data into your electronic spreadsheet or database, and perform other research activities.

With the complexity of today’s health problems and the increasing specialization of research methods, it is essential to build a research team with individuals who have complementary areas of expertise necessary for a successful, fundable research grant submission. Before building a research team, consult a reference on team science. For example, Collaboration and Team Science: A Field Guide is helpful for developing and managing your research team (Bennett, Gadlin & Levine-Finley, 2010).

Students can work with faculty through paid or unpaid internships, independent study courses, or as work-study students. It may be possible to recruit students from a variety of universities to work with you if the research topic is of interest to the student and their faculty are amenable to such an agreement. Engage students in your writing. Students who are English majors are perfect for writing or editing manuscripts, and students at all levels of education can participate in manuscript development. Working with students can be a reciprocal relationship for the faculty member, clinical agency, and students. There can be an increase in the number

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and type of publications. Students receive authorship on faculty publications, and your research productivity and dissemination increases – something that contributes to success when applying for research funding.

Publish . . . Publish . . . Publish As you launch into an area of research, consider publishing a concept analysis followed by a systematic review of the literature. Examine the research conducted in your area and the extent of available systematic review, meta-synthesis, and meta-analysis articles related to your research topic. Journal editors and researchers are looking for thoughtful and well-written review articles that provide the state of the science on a given research topic (Conn, 2009). Researchers in academic and clinical environments should collaborate on publishing interesting clinical papers and case studies. Review the literature for what is known. Include this review with an analysis of a clinical case and ideas for future research. Look for alternative ways to publish. For example, you may want to conduct a critical review of an instrument for the Directory & Repository of Educational Assessment Measures (DREAM). This is a repository for instruments used in health sciences research. Your critical review could be included in the peer-reviewed MedEdPORTAL Publications. Also, there are other repositories that may be suitable for your research-related publications. Exploring possible non-peer reviewed publications may be fruitful as well. For example, consider submitting a review of a book on a topic related to your research. Also consider writing a letter to the editor about flaws that you may find in an article. If you have a program of research, submit abstracts to be peer-reviewed for meetings. Consider both poster and podium presentations. This allows you to disseminate aspects of your research to scholars with the same interest and to meet influential people in your field. Also, sometimes these abstracts are published in conference proceedings.

Diversify Your Research It is not uncommon for researchers to have variety in their research. Some manage more than one research program at the same time, although junior faculty are encouraged to stay focused on one fundable research program. This is especially true during early stages of an academic career. Yet faculty can diversify their research simply by focusing on more than one aspect of their research program. For example, research can be diversified by conducting studies with different populations or using different methodologies. Also, there are always opportunities to use existing data to conduct secondary data analyses in your area of research. Many times this is done between funded grants. Collaborate with a research team that focuses on translational research (Woolf, 2008). Translating research findings into clinical practice, health services, and healthcare decisionmaking is a current trend in research. This is another opportunity for academic and clinical researcher collaboration. Furthermore, findings from translational research have the potential to improve the quality of healthcare.

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Remain open to learning new methodologies that expand and diversify your research, and focus on developing expertise in new areas. Funders may be willing to fund aspects of a diversified study if it contributes to a body of scientific knowledge. Funding is available for planning and conducting pilot and feasibility studies to determine areas of research worth pursuing in the future.

Find Alternative Funding Methods Federal funding sources include agencies such as the National Institutes of Health (NIH). Other federal agencies to consider include the Departments of Labor and Education, Health Resources and Services Administration (HRSA), Centers for Disease Control and Prevention (CDC), and National Science Foundation (NSF). Additionally, the Department of Defense (DoD) as well as state governments and foundations are potential sources for research funding. Consider also the Departments of Human Resources, Health, and Labor in your state and state healthcare foundations. Other potential sources of funding include private companies and local business, such as telecommunications companies, banks, and company foundations such as the Coca Cola Foundation. Professional associations and foundations often have research grants available. Check websites of associations that are a good fit with your area of research. Finally, philanthropists often offer grants through their foundations. A few examples are the Ford Foundation, Bill and Melinda Gates Foundation, Hearst Foundation, Josiah Macy Jr. Foundation, W. K. Kellogg Foundation, Kresge Foundation, Rockefeller Foundation and Spencer Foundation. Another alternative way of funding your research is to chunk your grant applications. As you shop around for funding agencies interested in your research, you may not be able to find one funder that is willing to fund your entire research project. Instead, you might need to chunk your grant by applying for several smaller grants, especially in the beginning stages of your research program. For example, one funding agency may be able to pay for your instruments, another may be able to pay for the lab work, and yet another may be able to pay for data analysis. In this way, you can get your research project funded using multiple alternative funding sources.

Think Creatively about your Pink Sheets At one time when an NIH grant was not funded, the principal investigator received a written grant review printed on pink sheets of paper – hence the term, pink sheets. When a research proposal is not funded, the principal investigator should be prepared mentally to address the needed revisions. Reading and making the best use of pink sheets is one way to improve the quality of the grant and prepare for resubmission (Agarwal, Chertow, & Mehta, 2006; Chao, 2008). One way to understand and make best use of reviewers’ comments is to build a matrix of review themes that you find throughout the reviewers’ comments. This helps you understand the commonalities and differences among reviewers’ comments and better interpret the reviewers’ feedback as a whole. Use the review comments matrix with your research team. Bring the team together and consider each comment while planning your next steps. Look for reviewers’ comments that

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suggest there is a fatal flaw in the grant. A grant with a fatal flaw needs to be reconsidered, and a determination must be made regarding whether it should be revised completely or whether the grant should be abandoned altogether. Also read for especially insightful comments that could help in revising and resubmitting the grant. These comments are invaluable; if used wisely in the revision, it is possible that there is a better chance of being funded with resubmission. After revising your grant, read the complete revised proposal out loud. This helps determine whether the revisions fit well in the grant and whether your writing flows logically. Give the reviewers’ comments to a colleague with expertise in the research area of your grant, and ask them to review your revised proposal. An external review of this type is invaluable and ensures improvement of your grant proposal.

Practice Time Management It is critical to manage your time when planning and conducting your research activities. Time management strategies can maximize your research productivity. Chase et al. (2013) presented a detailed discussion of time management strategies that address behaviors related to time assessment, planning and monitoring. Your strategies should be individualized or tailored to meet your needs. However, there are general strategies that you will find useful. For example, utilize SMART (Specific, Measureable, Attainable, Realistic, Time-Bound) planning and goal setting. Plan immediate and intermediate activities that lead to the successful accomplishment of long-term research goals. At the same time, manage your priorities. Set your goals in a way that prioritizes your most important research activities. Schedule research activities to maximize efficiency and effectiveness. Some researchers routinely get up early in the morning or stay up late at night to have time for writing without distractions. While some researchers are most productive in the morning, others work better late at night. Also, sometimes researchers schedule a concentrated block of writing time for particular research activities such as submitting a grant or finalizing a manuscript for publication. This may be a week-long or a weekend sabbatical, or it may be shorter, more frequent blocks of time. The key is learning what schedule works best for you and holding yourself accountable for working according to your set schedule. Maintain focus on your research program, and find synergies within work responsibilities. For example, in academia engage in teaching, practice and service that support your research. Find ways to protect your research time and maintain your research work schedule. The importance of this was highlighted in a recent study examining research and scholarship productivity of doctorally prepared nursing faculty engaged in teaching and mentoring doctoral students. In this study, Smeltzer et al. (2015) found that the strongest predictor of productivity was the average number of hours spent on research/scholarship-related activities.

Do Not Be Discouraged It is easy to get discouraged when you keep submitting grants and those grants are not funded. You may feel like the funding agencies do not appreciate your science or do not understand your study. Many times this discouragement manifests itself by researchers throwing themselves into other parts of their work such as additional service. This can become problematic, so persist in pursuing your research goals. Do not be discouraged. Fishing provides us with a good illustration of the importance of persistence. When you are serious about catching a fish in either deep salt water or a lake you cast the fishing line several times before you actually hook a fish. It is critical not to lose sight of your goal whether it is writing a manuscript or pursuing research funding. Keep revising and resubmitting your work. Just like a fisherman keeps trolling for fish by casting the line out and reeling it in before eventually catching a fish, so will the process of revising and resubmitting make you a better writer and success will come your way. If one organization does not fund your grant, try a different organization. Take inspiration from your passion, and do what you enjoy while contributing to the body of scientific knowledge related to your area of research.

Conclusion This commentary proposes several strategies for conducting research with limited resources; you also may have several strategies of your own (see Table 2). Consider slowing down to improve your situation awareness and engage in thoughtful research planning and goal setting. Build efficiencies and cost-effectiveness into your program of research. Pick a research program that you are passionate about and that will sustain you over your career. Build and work with an interdisciplinary team and engage students from various academic levels and disciplines. All can contribute to a successful research career. Disseminate your research through abstract submissions for poster and podium presentations, and finish the dissemination process by publishing your research in a variety of venues. Diversify your research by learning and using new methodologies, working with different research team members, and focusing your research in different areas. Look for alternative sources of funding that fit your research activities, and be creative about the sources of research funding you pursue. Also find ways to use your grant reviews to improve your next submission, and practice time management. Finally, and most importantly, do not get discouraged. Try the suggestions in this commentary to improve your success with funded research in either academia or clinical practice.

Keep in touch with your needs and pace yourself so you can stay the course to meet your long-term research goals. Managing a research program requires that you give up some activities. However, maintain what is most important to you, and be your own cheerleader by rewarding your small accomplishments. Finally, periodically check your time management strategies to see what course corrections, if any, are needed to keep you on time and on task. Identify facilitators and barriers to achieving your research goals, continue working on time management strategies, and realize that there is no one who manages their time perfectly. 100 Volume II, No. 1

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Table 2. Considerations for Conducting Your Research ´  Have you considered the Why, What, Who, Where, When and How of your research program? ´  How can you apply the principles of efficiency and cost-effectiveness to your research ideas? ´  How can you build a collaborative and interdisciplinary research team? ´  How can you engage students in your research? ´  What ideas do you have for new publications?

Agarwal, R., Chertow, G. M., & Mehta, R. L. (2006). Strategies for successful patient oriented research: Why did I (not) get funded? Clinical Journal of the American Society of Nephrology, 1(2), 340-343. Bennett, L. M., Gadlin, H., & Levine-Finley, S. (2010). Collaboration and team science: A field guide. Bethesda, MD: National Institutes of Health. Retrieved from http://teamscience.nih.gov Bozeman, B., Fay, D., & Slade, C. (2013). Research collaboration in universities and academic entrepreneurship: The-state-of-the-art. The Journal of Technology Transfer, 38(1), 1-67. Chao, N. (2008). What do you do with the “pink sheets?” Hematology American Society of Hematology Education Program, 2008(1), 23-25.

´  How can you diversify your research? ´  What alternative funding methods might be right for you? ´  How can you use your grant reviews to improve your next submission? ´  What new ideas do you have for managing your time in ways that can maximize your research productivity? ´  What are some ways that you can start taking better care of yourself while working on your research?

Chase, J. A., Topp, R., Smith, C. E., Cohen, M. Z., Fahrenwald, N., Zerwic, J. J., . . . Conn, V. S. (2013). Time management strategies for research productivity. Western Journal of Nursing Research, 35(2), 155-176. Cohen, M. Z., Alexander, G. L., Wyman, J. F., Fahrenwald, N. L., Porock, D., Wurzbach, M. E., . . . Conn, V. S. (2010). Scientific impact: Opportunity and necessity. Western Journal of Nursing Research, 32(5), 578-590. Conn, V. S. (2009). Western Journal of Nursing Research welcomes stellar review articles. Western Journal of Nursing Research, 31(3), 3-5. Conn, V. S. (2010a). Keeping nursing research afloat in a sinking economy. Western Journal of Nursing Research, 32(3), 279-280. Conn, V. S. (2010b). Scientific impact considered. Western Journal of Nursing Research, 32(5), 575-577. Conn, V. S. (2013). Lightening the load: Leadership strategies for enhancing faculty research productivity. Western Journal of Nursing Research, 35(2), 151-154. Conn, V. S., Porter, R. T., McDaniel, R. W., Rantz, M. J., & Maas, M. L. (2005). Building research productivity in an academic setting. Nursing Outlook, 53(5), 224-231. Endsley, M., Bolte, B., & Jones, D. (Eds.). (2003). Designing for situation awareness: An approach to user-centered design. Boca Raton, FL: Taylor & Francis. Katz, J. S., & Martin, B. R. (1997). What is research collaboration? Research Policy. 26, 1-18. Lencioni, P. (2002). The five dysfunctions of a team. San Francisco: Jossey-Bass. National Institutes of Health (2014). Research project success rates by NIH institute for 2014. Retrieved from http://report.nih.gov/success_rates/Success_ByIC.cfm

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Nolan, M. T., Wenzel, J., Han, H., Allen, J. K., Paez, K. A., & Mock, V. (2007). Advancing a program of research within a nursing faculty role. Journal of Professional Nursing, 24(6), 364-370.

Special Commentary A Brief History of the Poorhouse in America

Pitts, D. D. (2016). Go slow to go fast: Planning to execution presentation [Online supplemental material]. Pitts, D. D. (2016). Go slow to go fast. New York: Morgan James Publishing. Retrieved from http://bit.ly/GS2GFSlidedeck

Katharine L. Sparrow, MSW Dennis, MA Email: [email protected]

Smeltzer, S. C., Cantrell, M. A., Sharts-Hopko, N. C., Heverly, M. A., Jenkinson, A., & Nthenge, S. (2015). Assessment of the impact of teaching demands on research productivity among doctoral nursing program faculty. Journal of Professional Nursing. Advance online publication. Smeltzer, S. C., Sharts-Hopko, N. C., Cantrell, M. A., Heverly, M. A., Wise, N. J., Jenkinson, A., & Nthenge, S. (2014a). Challenges to research productivity of doctoral program nursing faculty. Nursing Outlook, 62(4), 268-274. Smeltzer, S. C., Sharts-Hopko, N. C., Cantrell, M. A., Heverly, M. A., Wise, N., Jenkinson, A., & Nthenge, S. (2014b). Nursing doctoral faculty perceptions of factors that affect their continued scholarship. Journal of Professional Nursing, 30(6), 493-501. Stokols, D., Misra, S., Moser, R. P., Hall, K. L., & Taylor, B. K. (2008). The ecology of team science: Understanding contextual influences on transdisciplinary collaboration. American Journal of Preventive Medicine, 35(2S), S96-S115.

Author Note This article was inspired by the author’s search for her great grandfather, who was born in a Scottish poorhouse in 1872. The opinions expressed here are those of the author alone. The author has no conflicts of interest.

Introduction We read headlines every day about how the percentage of people living in poverty is rising in America’s struggling economy. Debate rages among our law makers as to how best to assist the poor in our society. This debate is far from new. There have been several approaches to addressing poverty over the nearly four hundred year history since the colonization of America. As we search for better means of addressing poverty in our modern society, it is worth reviewing the efforts and failures of past eras. One very common means of providing for the poor in our country’s not-too-distant past was the poorhouse.

Woolf, S. H. (2008). The meaning of translational research and why it matters. Journal of the American Medical Association, 299(2), 211-213.

Figure 1. A colonial village in the era of indentured servitude. 104 Volume II, No. 1

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We read headlines every day about how the percentage of people living in poverty is rising in America’s struggling economy. Debate rages among our law makers as to how best to assist the poor in our society. This debate is far from new. There have been several approaches to addressing poverty over the nearly four hundred year history since the colonization of America. As we search for better means of addressing poverty in our modern society, it is worth reviewing the efforts and failures of past eras. One very common means of providing for the poor in our country’s not-too-distant past was the poorhouse. The first large scale poorhouse in the United States was built in 1660 in Boston, Massachusetts. Up to that time, the poor had been the responsibility of each small town and village. Sometimes they would be placed in the home of another resident who would provide for them in exchange for their work around the household or on their farm. Often times, a poor person or even a whole family would be shifted around to different households for a year at a time in each place, until they were able to care for themselves. The decisions about what to do with the destitute in a given community would usually be made at a village meeting, most often after a Sunday service at church. With the growth of villages into towns, the system became a bit more formalized. The children of poor families were “bound out.” This meant that they were auctioned off to the lowest bidder - the one who said they could provide for them at the lowest cost. This sum would be paid to the winning bidder by the town, which garnered the money through taxation. The person or family who “won” the child at auction would be required to provide a certain minimum standard of shelter, food, clothing and medical care, and usually they would be required to minimally educate the child, or train him in the trade of the caretaker. In this way, the child would presumably be able to care for himself once he came of age, which was 21 years. At that age, the care-taking family was typically responsible for providing the young adult with a new suit of clothing and a certain amount of cash so that he could then strike out on his own and hopefully find employment. As can easily be imagined, this system, also called indentured servitude, could be easily abused and with little oversight there were many children who were neglected, abused or overworked. If a child was lucky enough to have an honest and kind master, the system could work in his favor, but all too often such a child suffered miserably until his 21st birthday. Girls especially did not fare well in this system, as the only thing they were generally trained for during their indenture was domestic service. The education requirements were not equal to that of the boys, and were often non-existent for the girls. When they reached the age of maturity, they had little choice but to find employment as a housemaid where they would find themselves in much the same situation as the one in which they had grown up.

Changing Efforts for the Poor With the advent of the industrial revolution in the early 1800’s, cities grew very quickly, and so did their poverty problems. The system of binding out was no longer practical with so many poor needing assistance. At first, the cities tried using a system of “outside relief ”, which meant outside of an institution, or help that was given to them in their own homes. This system

would provide struggling families with fuel, food, clothing and cash for a period of time, again, paid for through local taxation. The role of religious poor relief efforts must also be considered here. Since the founding of the Christian church, monasteries across Christendom had the perpetual tradition of welcoming the poor and infirm, offering food, shelter and medical care. This tradition of providing for the destitute was brought to American with people of faith. One shining example of this is in the person of Mother Frances Xavier Warde, one of the original Sisters of Mercy in Ireland, who brought her mission across the ocean from her native Ireland to the United States in 1843. The aim of the Sisters of Mercy was three-fold: to provide immediate relief for those in need, to spread the Christian word to the hopeless, and to build permanent centers for education and health care in areas with greatest need. Many of these facilities remain today, serving the needy under the loving oversight of the Sisters of Mercy. Despite the successes of Outside Relief and religious outreach to the poor, it was thought that bringing the poor together to provide for them in an institution had a better chance of “reforming” them and encouraging them to develop a better work ethic, which was thought to be the main reason for them being poor in the first place. The short-sightedness of this assumption is stunning to us today, as we understand that the roots of poverty are complex and cannot be categorized so simplistically. However, to this end, the earliest poorhouses were built on farms, and the poor were required to work. It was also believed that this method would be more cost-effective than providing benefits directly to the poor. Figure 2. Children at a Poorhouse.

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This, then, brings us back to the poorhouse. Though the first poorhouses, also called almshouses, had appeared as early as the mid-1600’s, they did not become the norm until the early 1800’s, when states began to legislate that the poor were to be provided for by the state rather than the individual localities. This process was complete by about 1875, when most states administered their care of the poor through a state Board of Charities. The high hopes for these poorhouses or “almshouses” as money-saving and reforming institutions would quickly be dashed. People filled these poorhouses from all corners of the disadvantaged population. Besides being a refuge of last resort for the financially destitute, they became a magnet for the chronically ill, the drug and alcohol addicted, unwed pregnant mothers, disabled individuals, elderly who had no family to care for them, and the mentally ill, as well as droves of abandoned and orphaned children. The burden was a difficult one to manage, and many poorhouses became horrific places indeed, over-packed with sick, disabled, and mentally ill people who had no place else to go, as well as the poverty stricken. There were limited resources to provide for them, and poorly trained staff to administer them. The idea of having the poor work, while living at the poorhouse, failed for simple reasons. One was the lack of training for staff in the organizational skills needed to mount such an effort within the poorhouses. Secondly, as much of the poorhouse population was made up of either elderly, infirm or children, there were relatively few able-bodied residents available to work. Thus, those almshouses that attempted to manage farms on which the residents would work quickly failed in this endeavor.

Figure 3. A Poorhouse dormitory.

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A survey of the poorhouse system in the mid-1800s found these institutions to be sorely lacking in their care of the poor, and not to be cost-effective, as had been hoped. They tended to be poorly constructed buildings with inadequate ventilation which increased the spread of disease within the facilities. They were commonly filthy, providing less than adequate food and clothing. They were rat-infested and chronically short of even the most basic needs, such as beds and bedding. Medical care was sporadic at best, and many who might have been saved with proper care simply died there and were buried in the poorhouse graveyard, often with no ceremony or grave marker. Babies born in poorhouses by unwed mothers and prostitutes were frequently abandoned and seldom survived more than a few pitiful weeks or months in such conditions. By the 1870’s, certain groups of disadvantaged people began to be re-directed to other emerging institutions. Facilities such as mental hospitals for the mentally ill, county hospitals for the chronically sick, maternity homes for unwed mothers, and orphanages for children were more focused on specific segments of the poor populations, and hence more responsive to their needs. However, with help for the addicted still several decades away, they continued to utilize the poorhouses, but tended to be transient, as need for their substance of choice pulled them back to the streets. That left poorhouses to tend mostly to poor adult individuals, primarily men, who were usually short-term residents. The one population that remained a fixture within the poorhouse system was the elderly who had no means of caring for themselves. In this way, many poorhouses gradually transitioned to old age homes as the 19th century came to a close. The sad history of the poorhouse can still be traced through records which, for the most part, were very well kept and chronicle with great detail the statistics of each individual at admittance and at their discharge or, more often, their death. Pouring over these records is a fascinating endeavor for history buffs and genealogists alike, and doing so makes the experience of the unfortunate who ended up there more real and tangible. They are a reminder of a time when the poor were pushed to the margins of society, neglected and downtrodden, with little if any hope of escape from the grip of poverty. Anne Sullivan (later Macy), the beloved teacher of deaf/blind Helen Keller, spent four years of her childhood in a poorhouse. From the age of ten to fourteen (1876-1880) she lived in the Tewksbury State Almshouse in Massachusetts. Much later in her life she wrote about her experience there, a chapter in her life that she had not spoken about to anyone up until that time. Her words illustrate what we now know to be post-traumatic stress disorder, an understandable reaction to having spent four very vulnerable years in the Tewksbury institution where she was, as she describes, not separated from the mentally ill, addicted and violent populations within the institution. The following portion of Anne Sullivan Macy’s notes provide a striking glimpse into the degradation and hopelessness that must have been the reality for many who populated nineteenth century poorhouses.

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Figure 4. Anne Sullivan Macy, circa 1881.

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Articles

“Unexpected good has filled the chinks of frustration in my life. But at times melancholy without reason grips me as in a vice. A word, an odd inflection, the way somebody crosses the street, brings all the past before me with such amazing clearness and completeness, my heart stops beating for a moment. Then everything around me seems as it was so many years ago. Even the ugly frame-buildings are revived. Again I see the unsightly folk who hobbled, cursed, fed and snored like animals. I shiver recalling how I looked upon scenes of vile exposure - the open heart of a derelict is not a pleasant thing. I doubt if life, or eternity for that matter, is long enough to erase the terrors and ugly blots scored upon my brain by those dismal years.” Anne Sullivan Macy

and health services. The settlement movement advocated study and research into the roots of poverty and believed that private charitable organizations were best suited to deliver needed services and promote change for the poor. Through work in settlement houses, those in the upper classes who had little prior knowledge of the plight of the poor observed their condition and became advocates for social change. For example, one of the main causes of poverty noted was injury to the family bread winner due to work accidents, which were very common. Out of this concern the seeds were sown toward enacting labor laws to protect workers from unsafe working conditions. The settlement movement marked a shift in the perception of the poor and poverty. Rather than focusing primarily on “reforming” individuals so that they could pull themselves up, the settlement movement champions sought to identify environmental and societal conditions that made it impossible for struggling families to emerge from the cycle of poverty. This also marks a transition back to administering to the poor in their own homes and neighborhoods rather than housing them together in the poorhouses.

Figure 5. Alms House in Anne Arundel County, Maryland, circa 1933.

The Pendulum Swings Back Beginning in the 1880’s a new approach to poor relief came to the forefront with the emergence of the settlement movement. These pioneers of research into the causes and dynamics of poverty believed that living among those they sought to help was the best way to evaluate need and administer relief. Settlement houses, like Jane Addam’s Hull House, were built in poor neighborhoods and offered a variety of services including legal help, education

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Figure 6. Mealtime at Saint Pancras Almshouse.

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Articles Legacy of the Poorhouse With the advent of the welfare state and social security benefits in the 1930’s and 40’s, the need for the remaining poorhouses finally diminished, and those still in operation transitioned to hospitals or nursing homes, or were torn down completely. Many settlement houses became community health care centers, schools or community centers. The debate regarding the causes of and cures for poverty continues today, and in the United States there is always room for improvement in our treatment of and assistance to the poverty stricken among us. The experience of the poorhouse in America taught us how not to treat the poor. It remains our task as a society to complete the job of discovering the most humane and effective ways to offer hope and help to the disadvantaged of our time.

For Further Reading Crannell, L. (2014a). “The Poorhouse Story,” Retrieved from: http://www.poorhousestory.com/ Crannell, L. (2014b). “Historical Overview of the American Poorhouse System,” Retrieved from: http://www.poorhousestory.com/history.htm Deutsch, A. (1941). “The Sick Poor in Colonial Times,” Am Hist Rev 46(3): 560-579. Retrieved from: http://www.jstor.org/discover/10.2307/1839102?uid=3739696&uid=21 29&uid=2&uid=70&uid=4&uid=3739256&sid=56215701223 Liptak, D. (2007). “On Frances Ward and the U.S. Mercy Tradition She Began,” Retrieved from: http://www.mercyworld.org/_uploads/_ckpg/files/mirc/brief/liptakA4.pdf Marx, J. D. (2014). “Women, Settlements and Poverty,” The Social Welfare History Project. Retrieved from: http://www.socialwelfarehistory.com/settlement-houses/womensettlements-and-poverty/ Primary Research (2008-2009) “The Boston Overseers of the Poor,” A review of The Eighteenth Century Records of the Boston Overseers of the Poor, E. G. Nellis and A. D. Decker, eds. Retrieved from: http://www.primaryresearch.org/pr/index.php?option=com_content&vi ew=article&id=455&Itemid=300068 Tewksbury Hospital Cemetery (2009). Vital Records (click under Death Records for a chart of names, dates and causes of death) http://www.tewksburyhospitalcemetery.mavitalrecords.org/recordsindex.html Wikipedia (2016). History of Social Work, Retrieved from: https://en.wikipedia.org/wiki/ History_of_social_work

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EMERGING SCHOLARS CORNER

Emerging Scholars Corner The Effect of Eugenics and Sterilization Practices on African American Women’s Contraceptive Use in North Carolina Today Valencia Quiett First Year Medical Student Brody School of Medicine East Carolina University 447 Continental Dr. Durham, NC Tel: (919) 618-1799 Email: [email protected]

Author Note The author gives special thanks to Dr. Ashley Ward, PhD for her support and guidance during the writing of this article. The opinions expressed here are those of the author and do not reflect the position of the Brody School of Medicine at East Carolina University. The author has no conflicts of interest.

Abstract There is a legacy of abuse and neglect from the Eugenics Period. It is likely that these past abuses have resulted in current reproductive health disparities (e.g. abortions, unwanted and/or unintended pregnancies) of African American women. However, there is no existing literature that analyzes current reproductive health disparities from a Eugenics Period perspective in North Carolina. This research aims to associate the influence of this movement and the many reproductive health disparities that exist within this state. To investigate this relationship, an extensive history of the Eugenics Period, birth control practices, and distrust of minority people towards the medical community was researched in order to understand the context of past ideology that may impact current minority reproductive health disparities. In addition to the historical perspective, GIS spatial analysis was conducted in order to identify correlations between coerced sterilizations during the peak of the Eugenics Period (1946-1968) and reproductive disparities today (2010). Furthermore, connections were made based on themes in the literature indicating how the Eugenics Period influences reproductive health disparities in African American women currently. In conclusion, this article demonstrates geographical and literary connections that support that the Eugenics Movement may be an underlying factor impacting current reproductive health disparities in black women. Keywords: Eugenics, coerced sterilizations, African American, African American women

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Introduction Currently, there is evidence that education levels, socioeconomic status, reproductive health resources, and types of contraception contribute to health disparities in contraceptive use amongst African American women nationally (Finer & Zolna, 2014). These health disparities manifest themselves in higher rates of unintended pregnancies and higher rates of abortion (Cohen, 2008). However, due to the relevant historical past, the question arises of whether past eugenic practices and coerced sterilizations also contribute to the health disparities seen in contraceptive use amongst African American women of child-bearing years. By seeking to understand contraceptive health disparities from a eugenics historical perspective and analyzing a legacy of distrust from black peoples towards the medical community, this research article explores whether or not past negative eugenics policies and forced sterilization practices contribute to health disparities in contraceptive usage among African American women in North Carolina today.

Eugenics’ Historical Context The United States has an extensive history of controlling and manipulating the fertility of African American women. During the trans-Atlantic slave trade, pregnancy and birth among slave women was prohibited because it disrupted workflow on plantations. However, after the close of the slave trade, African American women were encouraged to have as many children as possible to increase the owner’s property. This encouragement ended when the slaves were freed, as there was a strong desire to reduce the number of African Americans present in the South (Harris & Wolfe, 2014). This reduction can be attributed to White’s fear of Black uprisings in the South, much like the Nat Turner uprising (Gates, 2013). Similar to this fertility manipulation during slavery, the Eugenics Movement of the twentieth century is another era in which African American women’s fertility was controlled (PBS, 1999). The sterilizations during the Eugenics Period in North Carolina have had a lasting impact on its inhabitants, especially minorities. At first, the movement focused its efforts on members of the white race. However, over time, this ideology shifted to limiting the African American population (Charlesworth & Charlesworth, 2014). According to its proponents, this limitation was for the greater good of the public as African Americans in general created a burden on the state’s welfare system. North Carolina had a “compelling state interest” in “prevent[ing] the procreation of children who will become a burden on the State.” (Silver, 2004).

Beginnings of Eugenics

“Of all the problems which will have to be faced in the future, in my opinion, the most difficult will be those concerning the treatment of the inferior races of mankind.” Leonard Darwin Eugenics is a term coined by Francis Galton in 1883. Influenced by Darwin’s Theory of Natural Selection: “Survival of the Fittest,” eugenics is a science that aims to improve the hereditary qualities of a race or breed. The ideals were built upon genetic theory: a new idea at the beginning of the twentieth century resulting from a lack of understanding of genetic heredity. The initial victims of the Eugenics Movement were white females and males who

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had “undesirable” traits that state officials and scientists within this movement did not want inherited. These traits included “feeble-mindedness,” criminality, insanity, pauperism, alcoholism, and many others (PBS, 1999). There are two forms of eugenics: positive and negative. Positive eugenics is the improvement of health and performance of the population by increasing the rate of reproduction of those with the desired traits and capabilities. Negative eugenics is the improvement of health and performance of the population by preventing reproduction of its least healthy and least capable members (Charlesworth & Charlesworth, 2014). Generally, negative eugenics is the main form of eugenics in which the government and social groups in the 20th century engaged. Negative eugenic practices included forced sterilization of women and men. Forced and coercive practices included withholding welfare assistance, sterilization without knowledge after medical procedures, and taking advantage of people in mental institutions (Siegel, 2011). As a result of Genetic Theory research, the American Eugenics Society (AES) was formed in 1921. Throughout the century, the AES popularized eugenics through cooperation with clergymen and other members of importance within communities. By 1928, eugenics was a theme in 376 separate college courses (~20,000 students), religious sermon contests, and the local and state fairs. Sermons and formal education were both methods used to promote eugenics and relay the message that immigration restriction, segregation, and sterilization policies should be maintained for society’s good. The contributions of the AES lead thirty-three states to adopt Eugenics Programs (Selden, n.d.). In 1927, sterilization laws were legalized in Virginia due to the Supreme Court case ruling of Buck v. Bell. Carrie Buck was a 17-year-old Virginian resident who had a daughter out of wedlock; she also had a mother who was deemed mentally unstable. Due to her circumstances, the State of Virginia labeled her “feebleminded” (a very subjective term meaning that a person was not conforming to expected social norms (e.g. having a child out of wedlock, mentally unstable, “promiscuous,” etc.) and aimed to have her sterilized (Silver, 2004). Justice Holmes, one of the associate judges of the case, stated, “Three generations of imbeciles are enough.” This ruling would allow and legitimize eugenics sterilization programs in many states across the nation, including North Carolina. It would not be until 1985 that historian Paul Lombardo acknowledged that Carrie Buck was not “feeble-minded” or “morally delinquent.” She was raped (Harris & Wolfe, 2014).

Eugenics in North Carolina In 1929, North Carolina passed its eugenics law stating that those who were deemed “feebleminded, mentally diseased, or epileptic” could be sterilized. North Carolina would grow to have one of the most aggressive sterilization policies and executions under the State’s Eugenics Board (Silver, 2004). As indicated by Railey and Begos, five members of this board judged whether or not an individual should lose the right to reproduce. Sterilizations were granted for more than 90% of the cases with very little investigation into the “evidence” (Railey & Begos, 2002). Over the course of forty-five years, this program would affect approximately 8000 North Carolinians (Silver, 2004).

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After World War II, many eugenic state programs ended because Hitler and the Nazi Regime in Germany justified their actions in the Nuremberg Trials by citing Buck v. Bell as legal precedent for the Nazi’s purity programs (Silver, 2004). Their work was based on the eugenics premise of creating the master race (Begos, 2009). However, North Carolina’s sterilization program was unique in that it expanded its services. One unique aspect of North Carolina’s sterilization program during this time was that it allowed social workers to petition for sterilizations of their cases. This practice increased the likelihood of involuntary sterilizations because social workers were entering the homes of poorer populations regularly. There were also cases of women in labor who were sterilized during the delivery of their children. This happened to Elaine Riddick, a Eugenics Movement victim. A man raped her on her way home from her school at age 13. When she gave birth, doctors allowed her illiterate grandmother to sign forms, consenting to her sterilization (Youtube, 2011). Winston Salem, North Carolina was the heart of North Carolina’s Eugenics Movement. In 1947, a group of elite formed the Human Betterment League. One of its benefactors was Dr. Clarence Gamble, the heir to Proctor and Gamble. The League used their influence and finances to fund and push a publicity campaign promoting eugenic sterilizations, making it possible for more people to be sterilized involuntarily due to public support (Begos, 2002). In addition to this publicity campaign, money was given to The Bowman Gray School of Medicine at Wake Forest University in 1953 to further population genetics research. Wickliffe Draper, a known racist and benefactor of research aiming to “prove” white superiority, also provided money to this particular research program (Begos, 2002). He attempted to use science to prove white superiority and reduce, if not eliminate, the reproduction of African Americans (Begos, 2002). The white superiority research pushed the Eugenics Movement to disproportionately target minority peoples. The peak of racially charged eugenics collided with the Civil Rights Movement. This was a time when racial tensions were escalating in our nation’s history - time when African Americans were fighting for basic rights. The right to be treated equally as their white counterparts, the right to be treated as human beings. As a consequence of the Civil Rights Movement, more money was allocated towards welfare programs for African Americans. This marked the shift in victim demographics. Eugenics was no longer about bettering the Caucasian race, but controlling the growth of minority populations. For example, federallyfunded family planning facilities opened their doors in predominately African American communities. The goal of these facilities was to limit the growth of minority populations and in turn reduce minority population dependency on welfare programs (Wilder, Bromfield, DeFiebre, & Prine, 2014). During the period from July 1946 to June 1968 this targeted practice affected African American women in North Carolina disproportionately in comparison to other racial groups. Women entered the hospital to give birth and left with no indication that they would never be able to have children again. Alternatively, some women were presented with a choice: have the surgery or have welfare withheld. Either way, these women’s reproductive rights were stripped from them. It has been noted that approximately 500 cases were “voluntary. This means approximately 94% of the sterilizations were forced. It is possible that the alleged “voluntary” sterilizations were actually involuntary as notes kept for each case were vague and the procedure for the victim may not have been adequately explained (e.g. the permanence of the procedure) (Begos, 2002). There are few choices one has when having assistance withheld.

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Current Impact In the twenty-first century, the issue of eugenics is not yet resolved. In 2012, thirtyeight years after the end of the sterilization program, Governor Bev Perdue apologized publicly to people affected by these policies. She proposed a $10.3 million compensation fund for sterilization victims (Perdue, 2012). As of 2012, there were only 177 known living sterilization victims remaining in North Carolina. To receive compensation, however, extensive paperwork was required from the victims. This paperwork included medical records indicating sterilization: tubal ligation for women and vasectomy for men. For some, this was impossible because there were no records indicating surgery or hospitalization. In the case of Mary Frances English, the medical records were destroyed. There are no medical records of either her hospitalization during the birth of her third son or the sterilization that occurred immediately afterward (Barnes, 2014). The topic of eugenics is still relevant because victims still seeking rightful compensation were denied. As of October 2014, close to 786 claims were filed, but only about 213 were deemed qualified for compensation (Evans, 2015). Due to wording of the compensation law, many were considered unqualified because the sterilizations were ordered by authorities other than the State Eugenics Board. Another victim, Ruby Brown-Davis, spent a decade trying to conceive a child with her husband, before learning that she had been sterilized under the order of county welfare officials in 1947. Her compensation claim was denied in October 2014. Advocates for victims like Ms. Brown Davis, pushed for the compensation law to be rewritten in a manner that encompassed all people wrongfully sterilized in the state of North Carolina and not just by the State Eugenics Board (Brown, 2014). As of the end of 2015, qualified victims have received two checks in a three check series summing $35,000 per person. Governor McCrory hopes that this compensation will help victims find some comfort (Evans, 2015).

A Legacy of Fear and Distrust The legacy of abuse in the medical system leads to continued distrust by the African American community and impedes successful recruitment of African Americans and other minority groups for research studies (Corbie –Smith, 2002). Sterilizing African American women against their will, without regard for their reproductive rights, ultimately resulted in sentiments that alienated these women from physicians (Begos, 2002). In a study conducted by Corbie-Smith, Thomas, & St. George, 527 African American and 382 white responses for a telephone survey were evaluated. A Distrust Index was created using the responses to three statements and seven questions. The statements and questions were phrased in a manner that one could either respond yes (or its equivalent) or do not know. The sum of the number of yes answers gave the score for the distrustful responses (Appendix - Table 1) (Corbie-Smith, Thomas, & St. George, 2002). The results of the study indicated that African Americans were more likely not to trust physicians to explain research fully, and they were less likely to believe that they could freely ask questions. They also believed that physicians would expose them to unnecessary risks. They were concerned about the medical community’s motives because previous studies dictated that there were generally more harmful outcomes for Blacks that participated in studies. This study revealed that African Americans were five times more likely to have distrust index values of five

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or higher than their white counterparts. This demonstrates that race is strongly associated with higher distrust in the medical community (Appendix – Figure 3) (Corbie-Smith, Thomas, & St. George, 2002). Additionally, there are many other studies that document the distrust African Americans feel from the medical community due to the manipulation of female fertility. Distrust in the medical community is also interconnected with conspiracy beliefs about the intentions of contraception. (Wilder, Bromfield, DeFiebre, & Prine, 2014). A study by Thorburn and Bogart demonstrated that more than one third of their respondents believed that medical and public health institutions use poor and minority people as “guinea pigs” to test new birth control methods (Thorburn & Bogart, 2005). African American men and women in recent studies have cited fear of genocide and government manipulation. These perceptions contribute to reasons why this population avoids contraception (Wilder, Bromfield, DeFiebre, & Prine, 2014). Another study demonstrated similar results, 32% of African Americans strongly or somewhat agree that the government tries to limit minority populations by encouraging birth control. These populations also believed that contraceptive implants are a form of population control targeting minority communities (Rocca & Harper, 2012). In another study conducted by Turner and Darity, 39.1% of African Americans believed that birth control programs are part of a plot to eliminate black people (Turner & Darity, 1973). These fears acknowledged by Corbie-Smith, Thomas, & St. George, Rocca, Harper, Turner and Darity are not unwarranted. In the 1960s, as African Americans gained more rights, they became increasingly suspicious of government-sponsored birth control: more specifically, the pill. Many believed it was very possible that birth control was part of the larger plan to minimize the black population. Rumors that there were two different types of pills helped fuel these fears. There was the white version, which temporarily prevented ovulation, and then a black version, which caused sterilization. These rumors were unsettling and made many African Americans question the intentions of the government. African American women resented the way whitedominated organizations seem to push the pill in black communities. Why could they not obtain basic health care like aspirin for a headache, but they were able to get birth control at no cost? (PBS, 1999). Why was white America pushing for family planning in the black community but failing to push for equal educational and occupational opportunities? (Turner & Darity, 1973). Another violation of trust of African Americans by the government involved a longterm birth control product, Norplant. In the 1980s, President Reagan suggested that women on welfare deliberately had more children to increase the amount of their welfare checks. Consequently, states encouraged women on welfare to use the long acting Norplant by providing monetary incentives. Some legislators even sought to create a policy that required welfare recipients to have the Norplant implanted to receive welfare benefits (Harris & Wolfe, 2014). Norplant was a form of birth control used primarily for African American female teenagers in the intercity populations. Norplant was also associated with long-term side effects, the most worrisome of which was irregular bleeding. This side effect can divert medical attention from serious conditions such as ectopic pregnancies and ovarian cancer (Burrell, 1995). To African Americans, contraception appeared to be a tool that decreased the “burden” on the welfare system and limit reproductive rights, instead of providing greater reproductive

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freedom and protection from unintended births. As Burrell stated, “Time and time again, African American mothers are subjected to the limited reproductive liberties” (Burrell, 1995); this is only a continuation of manipulated fertility and further injustice in the black community.

Evident Results: Racial Disparities, Sterilization, and Contraceptive Methods Disparities in health, health care, and health outcomes have been extensively documented in public health and biomedical literature (Corbie-Smith, Thomas, & St. George, 2002). Amongst these many disparities, there is a national disparity in reproductive health outcomes. Many authors in the field agree that African American women have higher rates of unintended pregnancies, abortion, and unplanned births amongst women of reproductive age (ages 15-44) (Rocca & Harper, 2012 & Wilder, Bromfield, DeFiebre, & Prine, 2014) in comparison to other racial and ethnic groups. According to the National Health Statistics Reports, 83% of African American women at risk of unintended pregnancies currently use a form of contraception compared to 95% of White and Hispanic women and 90% Asian women. Another alarming statistic is that half of births to black women are unintended in comparison to 27.1% and 30% for white and Hispanic women respectively (Thorburn & Bogart, 2005). A reason for these higher rates associated with unintended pregnancies is that low income and minority women are less likely to have effective contraception methods (Wilder, Bromfield, DeFiebre, & Prine, 2014). Another reason is that the use of contraception among African American women is characterized by inconsistency and high discontinuation rates. This is particularly true for the pill and condoms (Rocca & Harper, 2012). Abortion rates are another area where African American women exceed their counterparts (Wilder, Bromfield, DeFiebre, & Prine, 2014). Poor contraceptive usage among African American women and difference in knowledge and overall attitudes about contraception contribute to this disparity. The attitudes portion is particularly important, as there is concern among members of the African American community that birth control programs may be a method of perpetuating black genocide (Turner & Darity, 1973). Black women are more likely to seek family planning than black men. However, overall, 60% of black people believed that birth control is a form of controlling the black population (Turner & Darity, 1973). Thorburn and Bogart also cited fear of genocide and government manipulation as reasons as to avoid the use of contraception (Thorburn & Bogart, 2005). Sterilizations are most common among Blacks and Hispanics living below 150% of the federal poverty line, women with less college education, and women that are publicly insured or uninsured (Wilder, Bromfield, DeFiebre, & Prine, 2014). As such, African American women are more likely to have family members who have undergone tubal sterilization. This same demographic also believed that sterilization could be reversed to easily restore fertility. This further implicates a lack of patient understanding and of the failures of doctors to obtain informed consent in the medical community. Furthermore, studies indicate that men’s beliefs impact (positively and negatively) women’s contraceptive use and overall reproductive health. According to Wilder, Bromfield, DeFiebre,

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& Prine, many women with whom they interacted in a primary care setting indicated that their partners influenced both their choice to use birth control and the type of birth control to use (Wilder, Bromfield, DeFiebre, & Prine, 2014). This fact becomes particularly important when evaluating what elements influence the partner’s beliefs.

Research Methods

GIS Research Methods To explore the connection between eugenics practices and current health disparities, the number of sterilizations per North Carolina County during the peak Eugenics Period ( June 1946-July 1968) was accessed from North Carolina’s Office of Justice for Sterilized Victims. The sterilizations were normalized by average total population of childbearing years for both men and women (ages 15-44) (US Census, 1940s, 1950s 1960s). As sixteen percent of victims were men, the male population was included (Schoen, 2005). The data were viewed using the five natural breaks to determine if there were outliers in the data set. ArcMap was used to visualize the number of sterilizations in each North Carolina County. The number of unintended pregnancies is a sound indicator of lack of contraceptive use or misuse of contraception. Data for unintended pregnancies were obtained on a county level. To measure unintended pregnancies on a county level by African American women in North Carolina counties, the number of abortions by county was considered. The number of abortions reported by North Carolina’s health officials for the year 2010 was used as an indicator of unintended pregnancies in African American women because both sets of data follow similar patterns (Appendix – Figure 4). The raw number of abortions was acquired from the North Carolina Department of Health and Human Services (North Carolina Reported Pregnancies, 2010). The raw number of abortions by race was normalized by the number of either Caucasian or African American women of reproductive age (ages 15-44) of each race respectively (i.e. number of black abortions/number of black females of reproductive age in the county). This normalized information was gathered from the U.S. Decennial Census using SocialExplorer (US Census, 2010). This demonstrated whether the number of abortions disproportionately affected a certain demographic group based on the overall demographic population of each county.

Research Results

GIS Spatial Analysis African Americans were disproportionally impacted by Sterilization policies during the peak of the Eugenics Period (Appendix – Figure 5). Poorer counties in the eastern, western, and central North Carolina with a legacy of minority peoples appear to be more affected by coerced sterilizations as illustrated by Figure 1. Normalized Sterlizations: July 1946 - June 1968

Figure 1. The number of sterilizations per county normalized by the average total population of childbearing years (ages 15-44) in each county. The average total population of childbearing years for each county was calculated using data from the U.S. Decennial Census. Figure 2 is a map of the proportion of normalized African American abortions above the state average. This map demonstrates a similar pattern in eastern, western, and central North Carolina. Proportion of African American Abortions Above State Average - 2010

The proportion of the rate of African American abortions to the rate of white abortions was calculated per county resulting in an average ratio of approximately 3.75 for all counties. A map was created illustrating the individual county proportions in comparison to the average.

Literature Research Methods In addition to the GIS Research and analysis, connections based on major themes within the literature were made.

Figure 2. The proportion of normalized African American abortions to normalized Caucasian abortions. The average proportion was approximately 3.75. The darker regions indicate proportions above the state average in 2010. 122 Volume II, No. 1

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The specific patterns considered are outlined in yellow on Figure 1 and Figure 2. In the Northeast part of North Carolina, counties most impacted by sterilizations were Camden, Perquimans, Gates, and Chowan. The corresponding counties in Figure 2 where African American abortions were above the state average were Chowan, Edgecombe, Halifax, and Bertie. Although the counties are not exactly the same regarding sterilizations and abortions, there is still a concentration of counties disproportionately impacted in a similar geographic zone. It is important to note that Chowan County has a high number of sterilizations during the Eugenics Movement and a high proportion of African American Abortions. This intersection supports a potential connection between these two eras in the indicated region. Another area of interest is in central North Carolina. Moore, Lee, and Chatham counties exhibit a higher number of sterilizations during the Eugenics Movement. In more recent times, Moore County continues the trend with representing a higher proportion of African American abortions. Again, this correspondence is important because it indicates evidence of historical bonds and generational ideology passed down resulting in decreased contraceptive use. In addition to these regions in Eastern and Central North Carolina, there are also counties in Western North Carolina that depict a comparable pattern. In Figure 1, Transylvania, Mecklenburg, McDowell, and Polk counties represent higher proportions of sterilizations. In Figure 2, counties characterizing higher proportions of African American Abortions are Transylvania, Henderson, Rutherford, McDowell, Mecklenburg, Gaston, and Union Counties. Counties demonstrating a higher number of sterilizations and proportion of African American Abortions in this region are Transylvania, McDowell, and Mecklenburg. As previously specified, counties that have this overlap may indicate that abuses during the Eugenics Movement affect African American women’s contraceptive use. As aforementioned, center regions and counties indicate a higher number of sterilization as well as represent a higher number of abortions in the African American female population. Because of these intersections, the Eugenics Period and its abusive practices should not be discounted when investigating the health disparities in contraceptive use as well as developing solutions that will improve contraceptive care in this population. It is evident that the same counties are not exact when comparing sterilizations and abortions. However, differences are to be expected because the twentieth century was a period of movement to regions with industry (Appendix – Figure 6 and Figure 7). The counties containing larger cities with wealth and industry (e.g. cotton, tobacco, lumber) such as Greensboro, Winston Salem, and Durham have lower sterilization rates than counties with just industry and little wealth. In her dissertation, Dr. Ashley Ward analyzed the movement of minority populations, particularly African American women. The figures from the 1940’s to the 1970’s suggest that these women were moving towards regions with industry (Ward, 2012). There appears to be a slightly greater increase in minority population in areas that have industry and little wealth compared to regions with industry and wealth. This further supports the understanding that sterilizations were directed towards counties with poorer, minority populations. The northeastern region in particular has a strong legacy of a large African American population relative to the overall African American population in North Carolina (Ward, 2012). Another explanation for variations in regions of the Eugenics Period is that the studied population may have aged out of the childbearing years criteria when analyzing abortions rates 124 Volume II, No. 1

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in 2010. In addition to aging populations, access to women’s health care is very limited in rural areas. This limited access to care would impact the number of abortions in each county and whether or not they were reported. There are limitations to the analysis of this data. The data used is one limitation, as abortions rates were used to measure unintended pregnancies. This was chosen as a surrogate for unintended pregnancies because data were not available on a county level, and because the patterns of abortions closely mimics the pattern of unintended pregnancies (Cohen, 2008). Although these patterns were very similar, the abortion data are for reported abortions by county. This does not account for the unreported induced abortions that also occur. The abortion rate estimate is most likely lower than the true rate. Additionally, there is no break down for the number of sterilizations per county by ethnicity. If these numbers existed, it could further assist in the exploration between the Eugenics Movement and the impact on the African American population. Another limitation is the comparison of different time periods. The mobility that has occurred since 1960’s will impact the demographic of each region and thus the calculations performed.

Literature Analysis While reviewing the literature, many authors mentioned the different beliefs amongst sexes and existing legislation when discussing birth control, trust in the government and its officials, and trust in the healthcare community. However, the literature had not quite identified how the Eugenics Movement induced these beliefs and legislation. This analysis section further draws those associations between major themes in the literature and this movement. Men influence (both negatively and positively) contraceptive usage in women as well as other reproductive health outcomes of women and children. This can be observed in personal relationships and impersonal (indirect) relationships. From a personal stand point, African American men are more likely to believe in conspiracy theories. These beliefs are derived from past events, such as the Eugenics Movement (Thorburn & Bogart, 2005). Vasectomies, a safer procedure than tubal ligation and an effective means of birth control are unpopular with African American males because of their belief that white people and the government are trying to control African American population sizes Dudgeon & Inhorn, 2004). The indirect relationship between men and African American women contraceptive use manifests itself in the structured legal system. From a legislative perspective, Buck v. Bell still sets a precedent for compulsory sterilizations (Silver, 2004). This case was decided upon by all male justices. As of 2004, there are seven states that still have laws upholding compulsory sterilization: Arkansas, Georgia, Idaho, Mississippi, Vermont, and Virginia (Silver, 2004). These laws permit sterilizations on the contingency of mental illness or “imbecility.” Coerced sterilizations during the peak period were also partiality contingent on mental illness. In addition to Buck v. Bell, antiquated beliefs and ideology passed generationally via predominate male politics continue to influence coerced sterilizations amongst African American women (Silver, 2004). Coerced sterilizations still exist in prison systems nationally. One of the most recently reported cases occurred in California. From 2006 to 2010, it was reported that approximately 150 inmates (many of whom were minority females) were coerced into sterilizations in two prisons. It was not until the media exposed this practice that the Journal of Health and Human Experience

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program was terminated (Stern, 2013). The governor of California signed a bill prohibiting the sterilization of all inmates on September 26, 2014.

Their fight remains as they continue to encounter obstacles within the legal system preventing them from reparations.

Moreover, the same archaic ideology exists in programs offering long-term contraception options for those who are underinsured and may not be able to afford long- term contraception. For example, US Long Active Reversible Contraception (LARC) programs offer intrauterine devices and other implants to women who do not have the means to pay for them. However, these same programs do not offer a means of reversing the procedure when the woman is ready to have children (Harris & Wolfe, 2014). Due to programs such as LARC, there are a higher percentage of African American women having permanent tubal sterilizations today as a form of long-term birth control. The link between forced sterilization in African American women in mid 1900’s and their low contraception usage rates today is no different than the link between the profitable business of forcefully incarcerating African American men in the 1900’s and the high rates of African American men in prison today. The present mirrors the injustices that occurred in the past through the manifestation of unjust disparities in the African American community.

In essence, Eugenics’ influence is still an important and relevant issue that should continue to be researched. History impacts the future whether we acknowledge it or not. It is only by recognizing the historic intersection of minorities, mistrust, and eugenics that we can begin to correct and develop additional programs of support to decrease the number of unintended pregnancies amongst African American women today. This includes addressing generational histories of African American women and birth control as well as addressing African American men who were impacted in their own right by this movement.

Finally, a further extension of this indirect relationship was established in the courtrooms in the form of plea deals. A recent example is when a Tennessean woman, Jasmine Randers, was prosecuted for the unexplained death of her daughter in 2012. To be offered a plea deal and to avoid a fifteen-year prison sentence for aggravated child neglect charges, the Assistant District Attorney presented Randers with the option of undergoing the tubal sterilization procedure. There would be no deal unless Randers agreed to those terms (Williams, 2015).

Conclusion Thorburn and Bogart state that there are a disproportionate number of unintended/ unwanted pregnancies among African American females in comparison to other ethnic populations in the same age range: 98.9/1000 had an unintended pregnancy compared to 35.5/1000 (Caucasian) and 69.4/1000 (Hispanic) (Thorburn & Bogart, 2005). As discussed, elements of the Eugenics Movement, lend itself to these statistics as they apply to North Carolina. The objective of the article is not to identify a causal relationship between the Eugenics Movement and health disparities in contraceptive care amongst African American women in North Carolina, but to illuminate the Eugenics Movement as an underlying issue for consideration when addressing health disparities in contraceptive use amongst black women and when creating public health programs to address the disparity. This manuscript initiates the geographical comparison between the Eugenics Period and contraceptive use currently. The geographic analysis illustrates an overlapping trend in regions across the state that should be acknowledged when developing solutions that will improve contraceptive care in the African American female population. The literature analysis illustrates men’s influence on the use of contraception by African American women (Thorburn & Bogart, 2005). It is through personal and indirect relationships that men influence African American females. The indirect relationship in particular expresses itself through the broader structural legislative system. Policies as well as ideology derived from this era continue to be rooted in legislation. Examples of policies stemming from this period are forced sterilizations in the prison system and sterilizations as part of plea deals. Furthermore, women in North Carolina are still fighting to be rightfully compensated for the policy that stripped their ability to be mothers.

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Reflection The initial purpose of this research was to explore the historical context of Eugenics in the South as a movement. It was meant to investigate a period of North Carolina’s history that is often overlooked – either forgotten or believed to be a relic of the past. As I uncovered more information, I was surprised to note that the Eugenics program was only abolished officially in the late 1970s; however, sterilizations continued in practice elsewhere in the United States. For example, they were used in prisons in California until 2010 and were part of plea deals in Tennessee until 2015. Given this legacy, it was not difficult to acknowledge how this practice could foster mistrust of the government and healthcare officials in vulnerable communities, leading today to the effect we see in contraception use. The institution of medicine was in a clear violation of the most fundamental aspect of the Hippocratic Oath– do no harm. Rather, it became a tool to further manipulate vulnerable populations, stripping people of their right to reproduce because they did not fit into societal norms. This is an incredibly difficult past to overcome, especially since some victims were not afforded the acknowledgement and closure that they needed. This year marks the fiftieth anniversary of the Nuremberg Trials verdict from World War II in which German Nazi officials defended the genocide of Jewish people claiming the Eugenics movement as precedence. The Nuremberg Trials and the Eugenics movement are powerful reminders that the improper use of medicine can be detrimental to humanity. While medical advances give us the power and opportunity to provide care to our communities in need, abuse of that power can destroy the patient-physician relationship in those communities for generations to come. Moving forward, healthcare providers should be challenged to view their patient’s issues through a unique historical lens. They should be challenged to acknowledge the real consequences that improper use of medicine can have on a community before engaging in the education of their patients. As a future health care provider, I will need to be aware of biases that I may possess or develop towards my patients. I will need to be connected with the community for which I care so that I can have context for my patients’ decisions and attitudes regarding healthcare, understanding that the institution of medicine has provided certain groups valid reasons to wary. Issues such as contraceptive care in the African American community will not resolve themselves without the recognition of historic events and the consideration of the need for members of healthcare teams to connect with their own communities. It is critical that current healthcare providers inspire people of vulnerable populations to participate in discussions about

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patient autonomy and to consider the unique perspective they can offer to the improvement of population health as future health providers. It is only then that the institution of medicine will be begin fostering greater trust amongst vulnerable populations and achieve its true goal of preventing suboptimal health outcomes.

Appendix

Figure 5. North Carolina sterilizations by race from 1937 to 1966 (Schoen, 2005). A Geographical Distribution of Tobacco Mills in North Carolina in 1896 from Walbert’s “North Carolina in the New South”

Figure 3. Racial and Ethnic Disparities in Reproductive Health Outcomes – Unintended pregnancy rates, abortions rates, unplanned birth rates – in 2008 (Wilder, Bromfield, DeFiebre, & Prine, 2014).

Figure 6. Tobacco mills in North Carolina right before the twentieth century (Walbert, n.d.).

Figure 4. National unintended pregnancy rates and abortion rates for white, Hispanic, and black women of childbearing age (Cohen, 2008). 128 Volume II, No. 1

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A Geographical Distribution of Textile Mills in North Carolina in 1896 from Walbert’s “North Carolina in the New South”

References Barnes, G. (2014, June 5). Time running out for North Carolina Eugenics victims to file claims. Retrieved October 14, 2014. ABC 11 News. http://abc11.com/news/time-running-outfor-north-carolina-eugenics-victims/94156/. Begos, K. (2002, December 9). Benefactor With a Racist Bent. Retrieved November 20, 2014, from http://www.journalnow.com/news/local/benefactor-with-a-racist-bent/article_ c3233614-8fe7-11e2-9446-0019bb30f31a.html Begos, K. (2002, December 9). Lifting the Curtain On a Shameful Era. Retrieved November 20, 2014, from http://www.journalnow.com/news/local/lifting-the-curtain-on-ashameful-era/article_fa19404e-8fdf-11e2-8fba-0019bb30f31a.html

Figure 7. Textile Mills in North Carolina right before the twentieth century (Walbert, n.d.). A Reference Map of North Carolina Counties from NC State University College of Agriculture and Life Sciences and College of Engineering

Brown, J. (2014, October 14). More delays in getting compensation for victims of North Carolina’s past eugenics program. Retrieved October 14, 2014, from http://abc11.com/ news/more-delays-in-getting-compensation-for-victims-of-eugenics-program-/350373/ Burrell, D. (1995). The Norplant Solution: Norplant and the Control of African-American Motherhood. UCLA Women’s Law Journal, 5(2), 401-444. Retrieved November 19, 2014, from HeinOnline.org. Charlesworth, B, Charlesworth, D. “Darwin and Genetics.” Genetics 183.3 (2009): 757-66. Genomic Society of America. Web. 22 Apr. 2014. . Cohen, S. (2008). Abortion and Women of Color: The Bigger Picture. Guttmacher Policy Review, 11(3), 539-544. Retrieved October 7, 2014, from https://www.guttmacher.org/ pubs/gpr/11/3/gpr110302.html Corbie-Smith, G., Thomas, S., & St. George, D. (2002). Distrust, Race, and Research. Archives of Internal Medicine, 162(21), 2458-2463. Retrieved October 24, 2014, from http://archinte.jamanetwork.com/article.aspx?articleid=214437

Figure 8. Map of labelled North Carolina counties for reference. (NC State University College of Agriculture and Life Sciences and College of Engineering, n.d.)

Decennial Census. (2010). SocialExplorer.com. retrieved from http://www.socialexplorer.com/ tables/C2010/R10845927. Decennial Census. (1960). SocialExplorer.com. retrieved from http://www.socialexplorer.com/ tables/C2010/R10845927. Dudgeon, M., & Inhorn, M. (2004). Men’s Influences On Women’s Reproductive Health: Medical Anthropological Perspectives. Social Science & Medicine, 59(7), 1379-1395. Retrieved November 19, 2014, from http://www.sciencedirect.com/science/article/pii/ S0277953603006282 Evans, M. (2015). State Sends Second Compensation Check to Eugenics Victims. Retrieved February 13, 2016 from http://www.journalnow.com/news/local/state-sendssecond-compensation-check-to-eugenics-victims/article_9f5add55-cb37-5de1-be9d270ff87f820d.html.

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Finer, L., & Zolna, M. (2014). Shifts in Intended and Unintended Pregnancies in the United States, 2001–2008. American Journal of Public Health, 104(1), 43-48. Retrieved October 22, 2014, from http://www.guttmacher.org/pubs/journals/ajph.2013.301416.pdf

Siegel, R. (2011). A Brutal Chapter in North Carolina’s Eugenics Past. National Public Radio. Retrieved October 26, 2014 from http://www.npr.org/templates/transcript/transcript. php?storyId=144375339

Gates Jr., H. (2013, April 22). Did African-American Slaves Rebel? Retrieved November 24, 2014, from http://www.theroot.com/articles/history/2013/04/did_africanamerican_ slaves_rebel.html

Silver, M. (2004). Eugenics and Compulsory Sterilization Laws: Providing Redress for the Victims of a Shameful Era in United States History. The George Washington Law Review, 72(4), 862-890. Retrieved November 7, 2014, from HeinOnline.org.

Harris, L., Wolfe, T. (2014). Stratified reproduction, family planning care and the double edge of history. Current Opinion in Obstetrics and Gynecology, 26(6), 539-544. Retrieved November 23, 2014, from OvidSP.

Sterilizations Performed by county. North Carolina Office of Justice for Sterilization Victims. Retrieved from http://www.sterilizationvictims.nc.gov/documents/County_RankSterilizations_Performed_per_County_%20Residence_%20July_1946-June%201968.pdf

UNC University Libraries. «North Carolina Maps: Browse by Location.” North Carolina Maps: Browse by Location. N.p., n.d. Web. Retrieved 18 Oct. 2015.

Stern, A. (2013). Sterilization Abuse in State Prisons: Time to Break With California’s Long Eugenic Patterns. Retrieved November 24, 2014, from http://www.huffingtonpost.com/ alex-stern/sterilization-california-prisons_b_3631287.html

North Carolina Reported Pregnancies for 2010. (2010). North Carolina Department of Health and Human Services. Retrieved from http://www.schs.state.nc.us/schs/data/ pregnancies/2010/. PBS. People & Events: Black Genocide. (1999). Retrieved October 24, 2014, from http://www.pbs.org/wgbh/amex/pill/peopleevents/e_genocide.html PBS. People & Events: Eugenics and Birth Control. (1999). Retrieved October 24, 2014, from http://www.pbs.org/wgbh/amex/pill/peopleevents/e_eugenics.html Perdue, B. (2012). News Release - Gov. Bev Perdue Will Propose $10.3 million in This Year’s Budget for Eugenics-Related Efforts. News Release - Gov. Bev Perdue Will Propose $10.3 million in This Year’s Budget for Eugenics-Related Efforts. Retrieved April 17, 2014, from http://www.doa.state.nc.us/media/releases/showrelease.asp?id=0002-25APR12

Thorburn, S., Bogart, L. (2005). Conspiracy Beliefs About Birth Control: Barriers To Pregnancy Prevention Among African Americans Of Reproductive Age. Health Education & Behavior, 32(4), 474-487. Retrieved September 19, 2014, from Sage Journals. Turner, C., Darity, W. (1973). Fears of genocide among black Americans as related to age, sex, and region. American Journal of Public Health, 63(12), 1029-1034. Retrieved October 25, 2014, from http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.63.12.1029 Victims of a eugenics sterilization program in North Carolina speak out. (2011, November 7). YouTube. Retrieved April 5, 2014, from https://www.youtube.com/watch?v=0exeyPb5BiA Walbert, D. (n.d.). 2.3 Industrialization in North Carolina. North Carolina in the New South. Retrieved June 11, 2015, from http://www.learnnc.org/lp/editions/nchist-newsouth/4745

Railey, J., Begos, K. (2002, December 9). Board did its duty, quietly. Retrieved November 15, 2014, from http://www.journalnow.com/news/local/board-did-its-duty-quietly/article_ c34a944e-8fe6-11e2-a729-0019bb30f31a.html

Ward, A.R. (2012). Echoes in a Changing Urban Landscape: Memories and Place Identity in Durham, North Carolina. Retrieved June 10, 2015, from https://cdr.lib.unc.edu/ indexablecontent/uuid:4dfe1501-a5be-48dc-911c-d81a92b92719

Rocca, C., Harper, C. (2012). Do Racial and Ethnic Differences in Contraceptive Attitudes and Knowledge Explain Disparities In Method Use? Perspectives on Sexual and Reproductive Health, 44(3), 150-158. Retrieved November 5, 2014, from Wiley Online Library.

Wilder, V., Bromfield, G., DeFiebre, G., & Prine, L. (2014). Disparities in Contraceptive Care. Journal of Health Care for the Poor and Underserved, 25(2), 451-459. Retrieved October 1, 2014, from Project Muse.

Selden, S. (n.d). Essay: Eugenics Popularization. EugenicsArchive.Org: Image Archive on American Eugenics Movement. (n.d.). EugenicsArchive.Org: Image Archive on American Eugenics Movement. Retrieved March 28, 2014, from http://www.eugenicsarchive.org/ eugenics/list3.pl

Williams, M. (2015). It’s time to end the era of coerced sterilization. SALON. Retrieved from http://www.salon.com/2015/03/30its_time_to_end_the_era_of_coerced_sterilization/

Schoen, J. (2005). Choice & coercion: birth control, sterilization, and abortion in public health and welfare. Chapel Hill: University of North Carolina Press.

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Aerospace Engineering and Its Role in Human Development Tyrell Tysheen Yorke Aerospace Intern GE Aviation Cincinnati, Ohio Tel: (951) 575-6457 Email: [email protected]

Author Note The author would like to thank Dr. Sharanbasaweshe Asundi of Tuskegee University’s Aerospace Department and Ms. Leigh A. Jones, JD, MSLS of Tuskegee University’s Engineering Library. The author would also like to thank his wife, Chloe E. Yorke for her support. The opinions in this article are those of the author and do not represent the university or GE Aviation. The author has no conflicts of interest.

Abstract This article explores the impact of aerospace engineering on human development. Aerospace engineering is described as the branch of engineering that deals with the design, development, testing, and production of aircraft, spacecraft, missiles, rocket-propulsion systems, and other equipment operated beyond the Earth’s atmosphere. This article introduces human imagination, curiosity, and innovation as the motivation behind the development of aerospace engineering. An evolutionary perspective of aerospace engineering from the Renaissance to the Space Age provides an historic overview. A section is provided to discuss the five major emerging areas of aerospace engineering issues and technologies today. These areas are reducing emissions, composite materials, Unmanned Aerial Systems, space commercialization, and cyber security. Lastly, an explanation of how humans have integrated the products of aerospace engineering into society highlights its importance in human development. Keywords: : aerospace engineering, cyber security, human experience

Introduction History attests that humans have long been fascinated by and benefited from the field of study known as aerospace engineering. This is evident in the myth of Daedalus and Icarus that stoked the imagination of the ancient Greeks, the work of Leonardo Da Vinci with his intricate drawing plans of flying objects, and the birth of powered human flight by the Wright brothers. Humanity has been propelled into the Space Age in the past 100 years by numerous advancements that have benefited the human experience. Human flight began in the imagination, centered in the desire to be free from the bondage of gravity, and then developed into a discipline that has played a significant role in human development.

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Aerospace engineering is a combination of aeronautical and astronautical engineering. These two disciplines encompass everything from the sky above to the stars beyond. Aerospace engineers construct vehicles for transportation and research of the heavens above. According to the Bureau of Labor Statistics, aerospace engineers design aircraft, spacecraft, satellites, and missiles. In addition, they test prototypes to make sure that they function according to design. Aerospace engineering has influenced transportation, space exploration, economic development, national defense, and human health. The industry of aerospace engineering is evolving every day, and each advancement sparks the desire to push technology to new limits. This curiosity about the unknown is the driving force behind the new cutting edge technologies developed in this lucrative industry. The earth is growing smaller as aerospace engineers discover how to better implement supersonic flight. The efforts for greener, more ecofriendly transportation is under way with improved efficiency of aircraft composed of lighter carbon fiber materials. UAVs (Unmanned Aerial Vehicles) are surveying the skies, providing national security, research, and recreation. Space expeditions are more accessible now that space is open to the private sector. And finally, every human being can access this vast amount of information through the internet. The yearning to know what is beyond reach is central to being human. Humans are realizing the relationship between space, time, and being. The synergies among them are captivated in every brilliant idea that an aerospace engineer produces. This article will soar into the field of aerospace engineering and the vital role it plays in human development.

What Is Aerospace Engineering? To grasp the impact aerospace engineering has on human development it is important to know what aerospace engineering is. Aerospace engineering is broken up into two categories: aeronautics and astronautics. Aeronautics is the science of flight within Earth’s atmosphere. Planes, helicopters, hot air balloons, and UAVs are just some of the vehicles that fall within the realm of aeronautics. Astronautics is the science of spaceflight beyond Earth’s atmosphere. Some of the vehicles associated with this are rockets, satellites, and space shuttles. The main disciplines in aerospace are aerodynamics, avionics, propulsion, and structures. Aerodynamics is the study of airflow around an object. It is not limited to the study of aircraft but also encompasses cars, trains, and anything where air interacts with a moving body. Figure 1. Space Shuttle Discovery launching into space. Avionics are the brains of the vehicle Photo courtesy nasaspaceinformation.blogspot.com Journal of Health and Human Experience

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that combine all the electronic systems that assist in overall performance. The propulsion system provides the force needed to drive the aircraft forward. Finally, the structure has to be strong enough to carry the payload. The field of aerospace engineering is growing at an exponential rate and new disciplines are continually being added to it. Those that work in this field are called aerospace engineers. Aerospace engineers exploit the forces the air generates to create, lift and fly through the atmosphere. They have to know fundamental mathematics, science, and physics to develop these complex machines. A wide range of aerospace topics related to air and spacecraft design, construction, and flight is offered, including mechanics, propulsion, physics, guidance and control, electronics and instrumentation, communications, computer and systems engineering, material science, fabrication and manufacturing, environmental science, noise, and emissions (Scott, 2011). Although the list goes on, engineers must be competent in each subgroup to ensure that all equipment is maintained and works the way it was designed. Their knowledge of how each subgroup is integrated displays the importance of precision and accuracy required in the aerospace industry. This plays a vital role in ensuring that people and the environment are safe.

Reaching For the Stars

“I sometimes think that the desire to fly after the fashion of birds is an idea handed down to us by our ancestors who, in their grueling travels across trackless lands in prehistoric times, look enviously on the birds soaring freely through space, at full speed, above all obstacles, on the infinite highway of the air.” Wilbur Wright

There is a question that can and should be asked: How did this fascination of soaring with the birds and cruising through the atmosphere begin? Human development is an evolutionary process that starts with self and transitions externally to discover the surrounding space. Our curiosity is sparked through the sensory faculties of touch, taste, smell, hearing, and sight to be converted into understanding. While the search for understanding is initiated through evidence and reason, what cannot be fully comprehended is explained with a theory. For example, before the Renaissance Period (1300-1700) the geocentric model, which posited the Earth at the center of the universe, was made popular by Aristotle and Ptolemy (87-150 CE) (Thomas E. Woods, 2005). This idea was accepted by the Catholic Church until Nicholas Copernicus (1473-1543) introduced the heliocentric model. The Copernican system proposed this new theory with evidence and reason supported by a mathematical model that the Earth revolved around the Sun (Thomas E. Woods, 2005). This new claim caused a paradigm shift in the way humans viewed the Earth as well as the space around them.

this law when an apple fell next to him while sitting under an apple tree. Not long afterward, an English physicist, Henry Cavendish, actually measured the gravitational force between two one-kilogram masses separated by a distance of one meter. This experiment yielded the universal gravitational constant, “G.” These combinations of scientific theories display human cooperation over a time span to further develop the foundation of aerospace. In 1783, the world experienced the first manned flight by hot air balloon in Annonay, France (Gillespie, 1984). This new activity earned the name of aerostation, which was used to describe the art of flying balloons, the scientific research and technical development aimed at their improvement, and the study of their aerodynamic behavior (Gillespie, 1984). Similar to the development of modern day space flight, animals were used to test the effects of flight. Interest in hot air balloons diminished after they were shown to be hazardous form of travel, but that did not stop scientists, engineers, and a few enthusiasts to continue in this field during the time. The birth of powered flight started in Kitty Hawk, North Carolina with Orville and Wilbur Wright, December 17th 1903. This marked a pivotal milestone in aerospace history. While there were many failed attempts, this was the first successful powered airplane called the Wright Flyer. Wilbur Wright paid tribute to Sir George Cayley who was considered the great scientific visionary of aviation, saying he was “the true inventor of the aeroplane and one of the most powerful geniuses in the history of aviation” (Allaz & Skilbeck, 2005). A German aeronautical pioneer, Otto Lilienthal, who died in a glider crash in 1896, also inspired them. The Wright brothers made improvements on their airplane and their success led to a contract with the Army.

This paradigm shift sparked the Scientific Revolution, bringing great minds together to make scientific progress. Astronomy was at the forefront of this progression and scientists, such as Galileo Galilei and Isaac Newton, made significant contributions. At this point, the foundations of practical aerospace theories were beginning to unfold. A combination of many past ideas was transformed into mathematical formulas and models to explain the mechanics of space. For example, the law of universal gravitation, developed by Isaac Newton, stated that “every particle in the Universe attracts every other particle with a force that is directly proportional to the product of their masses and inversely proportional to the square of the distance between them.” (Serway & Jewett, 2009). It is told that Isaac Newton came up with

In the years following the first flight of the Wright Flyer, the airplane industry grew tremendously at the start of World War One (1914). The war multiplied the production of airframes and engines by a factor of 100 and brought the aircraft industry into a totally new realm (Allaz & Skilbeck, 2005). Airplanes became more reliable and capable of flying longer distances while carrying heavier loads. The use of airplanes in the war varied from observation to combat, and transporting mail. The regular and

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Figure 2. The release of a hot-air balloon at Versailles on 19 September 1783. Courtesy of the Gimbel Aeronautics History Collection, U.S. Air Force Academy Library, Colorado Springs, Colorado (Gillespie, 1984). Volume II, No. 1 137

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speedy forwarding of mail was one of the surest means of maintaining the determination of the troops at war (Allaz & Skilbeck, 2005). After the war, the role of airplanes transitioned to mail delivery and then passenger flights. Space travel was the next innovation in the world of aeronautics and astronautics. The key to achieving the next level of space travel was the reinstatement of an age-old device called the rocket. Most authorities believe the invention of rockets is tied inextricably to the discovery of black powder, which served as the first rocket propellant. There is evidence that the Chinese were the first to use black powder and, therefore, probably the first to use rockets as well (Braun & Ordway III, 1985). The true potential of using a rocket for space travel was realized by three different men: Konstantin Eduardovitch Tsiolkovsky (1857-1935), Robert Hutchings Goddard (1882-1945) and Hermann Oberth (1894-1989). The United States and Russia were the forerunners of the Space Age. The first satellite was part of the Russian space program Sputnik I, and was launched on October 4, 1957. The purpose of the Sputnik Program was to gain technological experience and to gather scientific data in the biomedical field preliminary to attempting to place a man in orbit (LeGalley, 1964). This led to numerous other programs such as, Luniks, Vostoks, Cosmos, and Mars. The early United States’ program consisted of the Vanguard Program, whose purpose was to explore space during the International Geophysical Year; the Explorer Program, whose purpose was to make scientific measurements near the Earth; the Pioneer Program, to explore space in the vicinity of the Moon, the planets, and beyond; the Discovery Program, to develop an operational technique for the recovery of an unmanned capsule from orbit; and the Mercury Program, to launch a man into orbit, keep him alive in orbit, and safely recover him from orbit (LeGalley, 1964). However, before humans knew that space was habitable, animals were used to determine this fact. Animals were at the forefront of aerospace research to determine human habitability in space since 1935. For years humans have observed animals to understand aspects of human biology and function ( Jennings & Souza, 2004). These similarities in human biological functions made animals suitable for aerospace research. A dog named Laika was the first animal to orbit Earth, but definitely not the last. Other animals that have been launched into space include fish, frogs, monkeys, and chimpanzees. A remarkable benefit of animal research is the international cooperation and sharing of important findings from each flight that helps in developing safer means for space travel. According to the New England Anti –Vivisection Society (NEAVS), specific areas of interest in an animal’s response to spaceflight include bone, muscle, immunology and microbiology, neuroscience including behavior and performance, nutrition and metabolism and the cardiovascular system (Animals in Research, 2015). The animal data collected can be transferred to human models and help avert or elucidate the physical issues people face in the present day. Today, aerospace is brimming with new discoveries that are answering age-old questions. Who would have thought that humans would one day live in space? This study of life in space has inspired relatively new fields of research and industry. The area of aerospace medicine was developed as a preventive medicine field to promote the health and functional well-being of people traveling in air or space. The study of aerospace medicine is paving the way for humans to live in space. The International Space Station is orbiting 250 miles above the Earth at 17,000 mph with human astronauts who call it “home.”

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Five Emerging Issues and Advancements Reducing Emissions

Aviation is responsible for 2% of all human-made carbon-dioxide (CO2) emissions (Sridhar, Chen, Ng, & Linke, 2011). As a result of the United Nations conference on climate change held on November 30, 2015, countries are making efforts to achieve “greenhouse emissions neutrality” in the second half of the century (Davenport, Gillis, Chan, & Eddy, 2015). The aerospace community has researched different designs to reduce its carbon footprint. For example, aviation operations affect the climate in several ways by emitting carbon dioxide, water vapor and other greenhouse gasses that are an unavoidable by-product of the combustion of fossil fuels (Sridhar, Chen, Ng, & Linke, 2011). Researchers at NASA Ames Research Center, University of California, Santa Cruz, and DLR-German Aerospace Center are collaborating to determine a solution by studying the design of aircraft trajectories based on trade-offs between emission resources. A flight trajectory optimization algorithm with fuel and contrails models, which develops alternative flight paths, provides policy makers the necessary data to make trade-offs between persistent contrails mitigation and aircraft fuel consumption. This study develops an algorithm that calculates wind-optimal trajectories for cruising aircraft while reducing the amount of time spent in regions of airspace prone to persistent contrails formation (Sridhar, Chen, Ng, & Linke, 2011). The results of this research will help in developing an integrated capability combining traffic flow management concepts with both CO2 and nonCO2 emissions, as well as help policymakers understand the use of algorithms in the application of reducing greenhouse gasses. Furthermore, these innovations will lead to technological advancements in the aerospace industry that will benefit both people and the environment.

Composite Materials Both the environment and economy have benefitted from advancements in the study of composite materials. Composite material research has assisted aerospace engineering in achieving what has never been done before in the history of flight. One of the best examples to explain the advantages of composite materials is the Boeing 787 Dreamliner. The materials selected for the 787 Dreamliner provide the lowest operating costs over the life of the airplane (Boeing, n.d.). These composite materials are integrated into basic components of a flight vehicle, such as, the engines, fuselage, and wings. Composite fuselage sections of the Boeing 787 contain approximately 32 tons of carbon fiber reinforced plastic made with 21 tons of carbon fiber, that is to say advanced composites containing about 65% of carbon fiber (Biron, 2013). According to “Structural Health Monitoring of Aerospace Composites” by Victor Giurgiutiu, the primary needs for all the advanced composites used in aerospace applications remain the same, i.e., lighter weight, higher operating temperatures, greater stiffness, higher reliability, and increased affordability (Giurgiutiu, 2015).

Unmanned Aerial Systems An unmanned aerial system (UAS) is an aircraft that flies without a human pilot onboard. Their name can be used interchangeably as an unmanned aerial vehicle (UAV) or a drone. The UAS is found to be versatile with applications in different industries. High-resolution-cameraequipped UASs with reduced weight and enhanced stability can foster various industries such as military, agriculture, telecommunications, and oil production (Kim, Lee, & Sohn, 2016). In the figures below the out- and in-degree centralities of the spillover network are used to identify strong spillover-generating UAV technologies and strong spillover-receiving industries, respectively. Journal of Health and Human Experience

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Emerging Scholars Corner Space Commercialization The potential profitability of space commercialization will excite human ingenuity and revolutionize the aerospace community. After the retirement of the Space Shuttle program NASA depended on the Russian government to transport astronauts and cargo into space. On 16 September 2014, NASA announced a critical component of Launch America, the country’s highly anticipated next chapter in human spaceflight. Boeing and SpaceX now share the USD 6.8 billion “space taxi” contract. As a result, astronauts could be taking a ride on the space taxi pilot program as soon as 2017. Using these privately designed and manufactured capsules will allow NASA to transport humans to the ISS and beyond at a fraction of the current cost. It will also allow NASA to focus on sending a manned mission to Mars, and eventually, set up a viable system for space tourism (Chang, 2015). We can expect that one day in the near future private companies such as Space X, Scaled Composites, and Virgin Galactic will develop space vehicles to conduct space tours in low Earth orbit.

Cyber Security

Figure 3. Out-degree centrality of UAV technology during each period. (Kim, Lee, & Sohn, 2016)

Technological advancement in aerospace engineering is indubitably beneficial, but with that innovation comes threats and risks we have never before seen. An autonomous aircraft or spacecraft, such as a satellite, has computer software running different applications that control various components. These components may serve as a threat to national security if hacked by cyber terrorists. Examples of adversarial cyber activity against space assets recorded in the open literature include (Byrne, Morgan, Tan, Johnson, & Dorros, 2014): i. “On July 23, 2008, Landsat-7 experienced 12 or more minutes of interference. The responsible party did not achieve all steps required to command the satellite.” ii. “On October 22, 2008, Terra EOS AM-1 experienced nine or more minutes of interference. The responsible party achieved all steps required to command the satellite but did not issue commands.” iii. “A Chinese national was detained in December 2010 by Chinese authorities for violations of Chinese Administrative Law. This case resulted in the first confirmed detention of a Chinese national for hacking activity targeting U.S. Government agencies. Seven NASA systems, many containing export-restricted technical data, were compromised by the Chinese national.”

Figure 4. In-degree centrality of industry during each period (Kim, Lee, & Sohn, 2016)

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These cases expose the potential threats to society if technology advances in the aerospace industry without taking precautions to protect information and assets. There are cyber defense systems such as firewalls, virus protection, and SSO (Single Sign-On) accounts in the work place. However, when a hacker gets access to a user’s SSO account then that hacker is granted access to everything running with that user’s identity. There is an increased need for awareness and education of this phenomenon that highlights application-level security, where each piece protects itself from the other as opposed to trusting a course-grained perimeter firewall (Byrne, Morgan, Tan, Johnson, & Dorros, 2014).

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Emerging Scholars Corner

Enhancing the Human Experience Life on Earth is a constant interaction of humans, machines, and environment. Humans have a relationship with machines that has adverse effects on the environment. The aftermath would then have an effect on human beings. Humanity first realized this problem and then began to make progress in finding solutions, whether by using animals or humans as test subjects. This problem can be best described as doing whatever is necessary to advance the human race and promote the well being of humankind. When faced with different issues we begin to see an integration of engineering, humanities, and ethics when innovation alters the way people interact with each other and the environment. The application of aerospace engineering affects the way people interact with the economy and technology. In a speech kicking off NASA’s 50th anniversary year, NASA Administrator Michael Griffin said (Wilson, 2008): “We see the transformative effects of the Space Economy all around us through numerous technologies and life-saving capabilities. We see the Space Economy in the lives saved when advanced breast cancer screening catches tumors in time for treatment, or when a heart defibrillator restores the proper rhythm of a patient’s heart….We see it when weather satellites warn us of coming hurricanes, or when satellites provide information critical to understanding our environment and the effects of climate change. We see it when we use an ATM or pay for gas at the pump with an immediate electronic response via satellite. Technologies developed for exploring space are being used to increase crop yields and to search for good fishing regions at sea.” Aerospace engineering helps us understand the Earth on which we live. The perspective of how humans view space has evolved over time. Before the Renaissance, the Ptolemaic system (also known as the geocentric model) was popular. It was developed to explain how the planets, the Sun, and even the stars orbit around the Earth (Cessna, 2009). This serves as a good example of how humans have placed themselves at the center of the universe in their quest for self-knowledge. Moreover, the Ancient Greek philosophers saw it necessary to start with self. “Know thyself ” is the propellant of self-knowledge and self-knowledge encompasses every human experience. What once began as envy of the avian species turned into the pursuit of humans taking flight, seeing ourselves in places we had never before been. Since then, every voyage to new heights has allowed us to collect knowledge and return to Earth stronger and more enriched than before. The human fascination with space has always raised questions. How does Earth orbit around the sun? What is gravity? Can humans live in space? Even still, humanity dares to make efforts to answer such thought provoking questions. A poet once wrote, “Ah, but a man’s reach should exceed his grasp, or what’s a Heaven for?”(Robert Browning). The foundation of aerospace began with understanding the natural world and reached beyond the immediate knowledge of humanity thus sparking curiosity. The next step is to continue exploring what is not yet fully understood. Aerospace has provided for us a way of satisfying our undying desire to know without quenching our primitive instinct to be curious. It is the manner in which we as a human race may continue to connect the core of our being with our environment on Earth and the vastness beyond.

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References

Allaz, C., & Skilbeck, J. (2005). The History of Air Cargo and Airmail. Christopher Foyle Publishing. Animals in Research. (2015). Retrieved from NEAVS: http://www.neavs.org/research/space Biron, M. (2013). Thermosets and Composites: Material Selection, Applications, Manufacturing and Cost Analysis. Elsevier. Boeing. (n.d.). Boeing 787 Dreamliner. Retrieved from Boeing: http://www.boeing.com/ commercial/787/#/design-highlights/visionary-design/composites/ advanced-composite-use/ Braun, W. v., & Ordway III, F. I. (1985). Space Travel. New York: Harper & Row. Byrne, D., Morgan, D., Tan, K., Johnson, B., & Dorros, C. (2014). Cyber Defense of Spacebased Assets: Verifying and Validating Defensive Designs and Implementations. Procedia Computer Science, 28, 522-530. Cessna, A. (2009, June 17). Geocentric Model. Retrieved from www.universetoday.com: http://www.universetoday.com/32607/geocentric-model/ Chang, Y.-W. (2015). The first decade of commercial space tourism. Acta Astronautica, 108, 79-91. Davenport, C., Gillis, J., Chan, S., & Eddy, M. (2015, December 12). Inside the Paris Climate Deal. Retrieved from New York Times: http://www.nytimes.com/ interactive/2015/12/12/world/paris-climate-change-deal-explainer.html?action=click&co ntentCollection=earth®ion=rank&module=package&version=highlights&contentPl acement=1&pgtype=collection&_r=0 Gillespie, R. (1984). Ballooning in France and Britain, 1783-1786: Aerostation and Adventurism. Isis, 75(2), 249-268. Giurgiutiu, V. (2015). Structural Health Monitoring of Aerospace Composites. Academic Press. Jennings, D., & Souza, K. (2004). Animal Research in Support of Human Space Exploration. Woods Hole, Massachusetts. Kim, D. H., Lee, B. K., & Sohn, S. Y. (2016). Quantifying technology-industry spillover effects based on patent citation network analysis of unmanned aerial vehicle (UAV). Technological Forecasting and Social Change, Volume 105, 140-157. LeGalley, D. P. (1964). Scientific and Technical Results of U.S. and U.S.S.R. Satellite and Space Probes. In J. R. Baker, H. C. Corben, P. Dergarabedian, M. Eimer, L. B. Fong, A. D. Goedeke, . . . R. E. Roberson, Space Exploration. McGraw-Hill Book Company.

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Emerging Scholars Corner NSF. (2016, February 16). Gravitational waves detected 100 years after Einstein’s prediction. Retrieved from National Science Foundation: http://www.nsf.gov/news/news_summ. jsp?cntn_id=137628&org=NSF&from=news Scott, R. N. (2011). Encyclopedia of Aerospace Engineering. Chicago: American Library Association. Serway, R., & Jewett, J. (2009). Physics for Scientists and Engineers, Volume 1, Chapters 1-22. Belmont, CA: Mary Finch. Sridhar, B., Chen, N. Y., Ng, H. K., & Linke, F. (2011). Design of aircraft trajectories based on trade-offs between emission sources. 9th USA/Europe Air Traffic Management Research and Development Seminar, ATM 2011 (pp. 54-63). Berlin, Germany: EUROCONTROL. Thomas E. Woods, J. (2005). How The Catholic Church Built Western Civilization. Regnery Publishing. Wigand, R. T. (1982). Social and Public Policy Implications of Communication Satellites. In P. Anaejionu, N. C. Goldman, & P. J. Meeks (Ed.), Space and Society: Challenges and Choices. 59, pp. 221-259. The American Astronautical Society. Wilson, J. R. (2008, August 28). Space Program Benefits: NASA’s Positive Impact on Society. Retrieved from NASA: http://www.nasa.gov/50th/50th_magazine/benefits.html

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PROFILES IN COURAGE: THE NEXT CHAPTER

Profiles in Courage Articles A Refugee’s Story Jan K. Herman, MA The Historian of Navy Medicine (ret.) Tel: (202) 431-6901 E-mail: [email protected] Introduction This article is the third in a special series that regularly appears in the Journal of Health and Human Experience. This section is entitled, “Profiles in Courage: The Next Chapter.” This section highlights individuals of our time who move us to a greater understanding of the human experience. The articles published in this section bring to our attention contemporary issues and initiatives that call each of us to be truly healthy. This article is based upon an interview with a Vietnamese refugee woman, Ms. Dam Thuy Nguyen, who fled to the United States after the fall of Saigon in 1975. Her story is a powerful testament to the resilience of the human person. Ms. Nguyen’s words are italicized throughout the text to follow. Mr. Jan Herman is the 2015 Forrest C. Pogue Awardee for Excellence in Oral History. The opinions in this article are those of the author alone. The author has no financial conflicts of interest.

Hundreds of Thousands Die in Syrian Civil War Europe Facing Greatest Refugee Crisis since World War II Thousands Cross from Greece into Macedonia Europeans Deeply Divided on Refugees
 Allies Urge U.S. to Share the Burden What is past is definitely prologue. The above headlines from today’s newspapers could easily describe a time just 41 years ago when the United States confronted its own humanitarian crisis. * * * The refugee ship Lam Giang approached what remained of the South Vietnamese Navy fleet--and none too soon. The landing craft wallowed in the gentle swells with her one operating engine idling to slow the incoming sea. Her bilge pumps were losing the battle, and it was apparent to all the evacuees aboard that their vessel was sinking. Fortunately a South Vietnamese warship soon came alongside to render assistance and transfer the refugees to its deck as quickly as possible. Sailors rigged several rickety makeshift wooden planks between the two ships. The crew then instructed the refugees to walk one at a time across this narrow unstable bridge. Moving across those planks was a lot to ask of exhausted and terrified refugees who ranged in age from the very young to the elderly. Yet the orderly transfer seemed to proceed without incident until a pushing and shoving commotion suddenly developed among the refugees nearest the planks. A man had panicked, rushed forward, and

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knocked a young girl from the improvised “bridge” into the water. Before anyone could react, she was crushed between the two vessels. Instantly, a Vietnamese naval officer drew his pistol, shot the offender in the back of the head, and kicked his body into the sea. The plank bridge was scarcely adequate to transfer several thousand refugees from one vessel to another. Some of the younger, more athletic refugees dared to jump aboard the larger ship. Dam Thuy Nguyen, a slightly built woman, at first thought better of making the attempt. “I was almost 30 then and never did sports or knew how to jump very high.” Someone aboard the rescue vessel yelled to Thuy and her 13-year-old nephew, “Throw that boy over and I will catch him.” Thuy refused, noting how frequently the two vessels banged together and then moved apart. “If we miss, he would drop into the ocean and that would be the end of it,” she quickly realized. But the man was insistent, shouting, “Throw him over!” In desperation, Thuy found a piece of rope, and leaving many feet of slack, tied Nam to one end and the other end to her own body. “‘If anything happens, we both go,’ I thought. When the boat came very close, my nephew, who was a very brave boy, jumped. The two men who were standing on the other boat caught him. Then it was my turn and I jumped over. I sat there shaking like I was in outer space and began to cry. We can never see our family again. But now my nephew is counting on me. I am everything to him. He will be the last person to carry on my family name so I have to protect him. I have no choice. I have to be brave to myself and my family. No more crying.”

postponement would change her life. But, at the moment, with the enemy entering Saigon and rockets exploding nearby, her very survival and that of her family remained uncertain. March 1975 signaled the beginning of the end for South Vietnam. Each day the radio announced one defeat after another in the Central Highlands--Banmethuot, Pleiku, and then Kontum. Later that month, cities fell like dominoes from north to south--Danang, Quangtri, Hue, and Nha Trang. It was just a matter of time before the invaders swallowed up all of South Vietnam. But a well-to-do family with connections had a way out -- bribing the right government official with gold. So arrangements were made for Thuy’s family to leave Saigon. “We received the manifest with our name on it for the airplane with a flight number. A bus would pick us up behind the American Embassy’s back door at 1 o’clock on May 1 and take us to the airport. We would then show the manifest and they would take us on the plane.” Since the North Vietnamese army was deployed on the outskirts of Saigon by April 27, and with a 24-hour curfew in effect, the departure could not take place as planned. With the approaching sounds of battle, Thuy, her widowed mother, three of her unmarried siblings, and several relatives remained in their home, afraid to venture outside. Virtual prisoners, the Nguyens kept track of developments. “Then on the early morning of April 30, the radio officially announced that General Duong Van Minh, ‘Big Minh,’ had surrendered South Vietnam. Everybody looked at each other and that’s the end of it. But our family still hoped with the manifest to wait for the next day and, hopefully, could still leave the country.” The family developed a complicated plan that would have them leaving the house one at a time and rendezvousing at noon near the American Embassy. They would then board the bus near the site, as previously arranged, and go to the airport.

* * * In the last days of April 1975, America’s decade-old misadventure in South Vietnam ended in chaos and shame. When North Vietnamese armies surrounded Saigon and began shelling Tan Son Nhut airport, the magnitude of a nation’s final collapse suddenly became real and immediate. Panic and hysteria ruled the streets of South Vietnam’s capital as desperate people, fearing torture and death, tried to flee the city.

But because the city had already fallen to the North Vietnamese, the plan was more fantasy than practical. Viet Cong troops were already patrolling the neighborhood. As Thuy opened the front door to step outside, she encountered two VC. One soldier looked vaguely familiar.

In one Saigon neighborhood, a 29-year-old school teacher, Dam Thuy Nguyen, and her well-to-do family hunkered down in their home and pondered their fate, as they listened to the sounds of battle edging ever closer.

As it turned out, Thuy did know one of these VC, whose nephew had been her student. She continued talking with him to gain his confidence. He held a communist flag and was looking for a place to hang it.

Thuy had been born in central Vietnam and grew up in the ancient imperial city of Hue. As a youngster, Thuy dreamed of becoming a doctor, but was afraid of blood so instead became a French teacher at the prestigious Institute Lasan Taberd in Saigon. Thuy taught at the Institute until 1974 when the Minister of Education in Saigon selected her to teach Vietnamese children housed at Peace Village in Oberhausen, West Germany. Peace Village was a humanitarian initiative created to give children of war a fresh start. Thuy’s departure date was February 1975, but since the school year ended in the middle of April, she requested a delay; and that 148 Volume II, No. 1

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“I walked straight up to the communist soldier and tried to make friends. I said, ‘Hello. Welcome. How are you?’ I pretended to know him well and that I was happy to see him.”

“And right away that was a good reason for me to be flattering him. I said, ‘Look, let me find a good place to help you hang this flag up. How about letting me do it?’ He gave me the flag and I tried to find a place on the corner of my house.” Thuy continued in this obsequious tone by asking the VC, “Don’t you think it would look nice up there?”

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But she did not voice her innermost thoughts and instead tried to outsmart the soldier by playing up to his naiveté: “I just pretended nothing was happening but inside I’m boiling.” The young soldier innocently responded to her smooth talk. “He then said, ‘Yes. That’s nice.’” Thuy saw her opportunity. Feigning illness, she convinced the young fighter that she needed to go to the hospital, promising to return. Turning to his companion, the VC said, “Okay, we can let her go. She lives here. I know her.” Without further delay, she grabbed Nam and told the family chauffeur to drive them in the direction of the hospital. Once clear of the two VC, she instructed the chauffeur to proceed to the rendezvous site where she waited in vain until noon for the arrival of the other family members. Thuy then recounted, “By then I started seeing North Vietnamese tanks driving around in front of our school, the Saigon cathedral, and the post office, and not far from the president’s palace. I saw them run over people and kill them. I then realized it was too late to wait and I don’t have time to waste. I had to be brave and told my nephew, ‘Come on, let’s go!’” Thuy, Nam, and the chauffeur maneuvered aimlessly through Saigon’s chaotic streets not knowing where to go next. They spotted a man in a car waving at her and motioning for them to follow. “I didn’t know who he was but we followed him and then several cars followed me. We drove around like a parade along the river shore until we arrived at the Vietnamese Navy camp along the Saigon River. The car ahead of me then stopped and people got out and ran down to the river’s edge and jumped onto one boat. My nephew and I ran after them. The boat was high and very hard to get up. But we finally climbed up and I saw the number 402. I called it my ‘Destiny Boat.’” Thuy was one of thousands of refugees aboard Lam Giang, a shabby, hand-me-down U.S. Navy landing craft from World War II. As with other escapees, she soon witnessed a darker side of human nature. “Someone from the Vietnamese Navy stole some rice and kept it hidden on the boat. Later in the voyage he brought it out and sold it. That’s how we finally got some rice.” That the landing craft was taking on water through its partially closed bow doors was not lost on any of the passengers. She remembered the fear of that scene: “People were trying to get helmets, pots and pans, and whatever to bail out the water from the boat. But what was coming in was more than what was going out. It was hard to make a chain to throw the water out because it was so crowded.”

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During the desperate voyage down the Saigon River and out into open ocean it was never clear who was in charge or where they were headed. One refugee produced a portable radio and had it tuned to a Saigon station, drawing a large crowd around him. The announcer mentioned Lam Giang by name as having been stolen and demanded that it return to Saigon. Another man, identifying himself as a surgeon, had brought a book containing naval signaling instructions. He spent a great deal of time trying to determine how to signal another vessel for help. Thuy noted how intent the man was, going so far as using a woman’s makeup mirror and a flashlight to give lighted warning signs in the darkness. He did this signaling for hours until the flashlight battery eventually gave out. Their destination, Con Son Island, 146 miles from Saigon, finally appeared at daybreak the following morning and just in time. Lam Giang was sinking and only the arrival of a South Vietnamese warship on the scene enabled the successful transfer of the refugees before the derelict craft slipped beneath the South China Sea. A U.S. Navy warship, USS Kirk, witnessed the unfolding refugee drama as her crew provided medical assistance. The destroyer escort was on a special mission for the 7th Fleet task force: round up the remnants of the South Vietnamese navy fleet, now down to 32 ships, and escort them for a nearly thousand-mile voyage across the South China Sea to safety in the Philippines. Aboard those vessels were an estimated 30,000 refugees. The confusion and turmoil made clear a humanitarian crisis no one had anticipated. LT Hugh Doyle, one of Kirk’s officers, likened what he saw to Hershey bars melting on a hot summer sidewalk and crawling with ants. Kent Chipman, one of the enlisted sailors, recalled the refugees “…..crammed in just as tight as you could get. I don’t know how many people were on each ship below deck. But above deck, there were just thousands of people, as many as you could get on board.” Two of those refugees were Thuy Nguyen and her nephew, both demoralized by the circumstances. “Finally they gave us some rice and nguc mam [ fish sauce]. I found a ration box and kept the fish sauce in that. It was very hot on the deck and I tried to hide under a lifeboat to keep the sun off. I also tried to hide the fish sauce but the sun made it evaporate. It was like losing a diamond. I kept looking at the empty can with nothing but salt left in the bottom. Finally, we got with many other boats and went to Subic.” Nearly a week later, as the flotilla entered Philippine territorial waters, a diplomatic crisis developed, one that threatened the welfare of the refugees. The Ferdinand Marcos government suddenly declared that since the Republic of Vietnam no longer existed, the South Vietnamese vessels could not enter Subic Bay or any other Philippines port. But the quick-thinking U.S. ambassador in Manila, William Sullivan, changed the dictator’s mind and a compromise resulted. U.S. Navy personnel would go aboard the Vietnamese vessels and take command, disarm the ships, and replace the South Vietnamese flags with American flags. The ships would then enter Subic Bay as U.S. Navy ships. Thuy and her fellow refugees witnessed the most concrete evidence yet that their beloved nation no longer existed. “It was a tradition in our country to sing the national anthem and salute the flag. We just did it. We never really thought deeply about its meaning. But now a rush of patriotic fervor swept over me. I looked up at the flag as they slowly lowered it and cried like a baby. I realized that Journal of Health and Human Experience

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I would never see my flag again. We realized that it meant we were losing our land. That flag represented the country where I was born. It was a big loss. We were now family-less, countryless. It was all gone.” When they arrived in Subic Bay their ordeal was not over. The refugees were immediately transferred to a larger commercial ship chartered by the U.S. government, and these thousands of displaced persons began another long ocean voyage to a refugee camp in Guam. “Each day on that ship we got one apple for the two of us. And I cut it in half. I don’t want to give my nephew a big piece because it might spoil him.” In Guam, Thuy and Nam were assigned to a tent which they occupied with another family. She and Nam shared a single mattress. Each morning they lined up for meals in the hot sun surrounded by flies and dust. “My nephew was a spoiled brat at home, but now he became my protector. We got the paper plates but they were very thin so they just flopping around. I arranged with my nephew and we both agree that we would just get one meal for both of us and we’d use one plate to cover the other to keep the dust and flies out. They would scoop one ball of wet rice and some fish. They thought Asian people like to eat fish so the fish was so fishy. I have to use Tabasco sauce so I could eat it. Then we take the plate up on the hill under the tree and we’d eat that scoop of rice.” Thuy had an aunt living in Paris and contacted her through the International Committee of the Red Cross. Her aunt advised her not to come to France but to go to America if she had the choice. Soon Thuy and Nam were on a Pan Am flight to Pennsylvania, and eventually arrived at a refugee camp far superior to the one they had left on Guam: Fort Indiantown Gap, located northeast of Harrisburg. Everything was well organized and efficient. “They had a bus system so you could ride around the camp to visit whoever we wanted, to go to the Red Cross, or whatever.” They remained there awaiting a sponsor who would help them resettle in an American community and begin life anew. That sponsor turned out to be a Texas family living in Fort Worth. Having been subjected to American western films back in Vietnam, their impression of life in the Lone Star state filled them with dread. “When we were back home, we watched movies where they chased cows and wore boots. And my nephew asked, ‘What about me? I’m small. How can I climb on a horse?’ We were both so worried about the new life. How will we fit in?” When they landed in Texas, both pressed their faces to the airplane’s windows. “As we were getting off the plane, I looked out and I saw cars parking around and I screamed like a crazy woman. I turned to my nephew and said, ‘They have cars! They have cars!’ People looked at me as if I had lost my mind. I was so happy.” Thuy and her nephew met their sponsor family and moved into an apartment the family had rented for them. But only a week went by before Thuy wondered how they could survive without her getting a job. Living on charity was beneath Thuy’s dignity with her tradition of

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hard work and self-reliance. “Never do I want an open hand to receive assistance. I was a very high class teacher, and I’m ready to do whatever to make a living for my nephew and myself.” Seeking that employment became an everyday obsession. She pored through the local telephone directory until she found the number of the local education center’s head of personnel and called him. Fortunately she spoke English, albeit with a French-Vietnamese accent. Even though she got to speak with him, he was not encouraging. Persistence got her a meeting but the conversation did not go well. She recalls how the “interview” was conducted. “He said, ‘Please sit down. Now tell me why you want to see me.’ ‘I want a job’ ‘What kind of job?’ ‘I was a teacher and I want a teaching job.’ ‘But getting a license here is hard, you know.’ ‘Well, when I ran away from home, I didn’t bring anything.’ “He wanted to kick me out in a very polite way so he went to his desk and took out a bunch of papers. ‘How about I give you this test and see what capacity you can handle. If you pass it you can teach.’ “I agreed. He took me out to a corner with a small desk next to the secretary. I read the questions and I checked the answers in the boxes. He gave me one hour but I finished in 40 minutes. Then I just stood up and gave it to the secretary who then gave it to the boss. He asked her, ‘Did you help her or something?’ He then asked me to come into his office and sit down. He then said, ‘Did someone help you through this test?’ “I said, ‘What do you mean? I study. I read and understood.’ He was stuck with me because I passed the test so he cannot kick me out. I think he wanted to give that test to me because of the way I spoke English. So he said, ‘Why don’t you give me some time. When I have a job opening I’ll call you.’” But that call didn’t come as promised. Thuy called him every week and finally appeared in person at his office for another confrontation. “Why don’t you just tell me yes or no? If you have job, you have to say yes, and no if you don’t have job. And I don’t want to keep calling you and you say sorry.’ He then said, ‘You can apply for public assistance because you’re a refugee.’” Applying for “public assistance” was not what Thuy wanted to hear. “That was it! I cry like a baby--and so loud. He was so scared and then said, ‘Miss Thuy, please. What did I do? What did I say? I don’t mean to hurt you. Why do you cry so loud?’ Finally I said, ‘Sir, I don’t plan to come here open-handed. I need a job to work. But if you don’t have job, then let me know. I’ll go back and do something else. But I don’t want to ask for money.’ He said, ‘I’m so sorry. I didn’t mean to hurt you. Why don’t you give me three days and I’ll let you know for sure. Call me back in three days.’

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“And I called back in three days and he got a job for me as a teacher’s aide in the elementary school near where I lived.” Thuy taught at this school for a year before securing a position teaching in a GED program, augmenting her income by selling Avon products in her spare time. Always thinking about the family she left behind in Vietnam, she sent money to them via her aunt in Paris. Two and a half years after arriving in Texas, she reconnected with a friend she had known in Vietnam who was now living in Lansing, Michigan.

And the family Thuy left behind? She eventually sponsored her relatives and brought them all to the United States. Her mother came first and lived with Thuy until her mother died in 1987 at age 93. Her older sister lives in California with her family. Her younger sister lives near her in Falls Church, Virginia. Thuy’s younger brother resides in Washington, D.C. Her older brother spent seven years in a communist prison before his arrival. He is the father of her beloved nephew and companion, Nam, and lives in Annandale, Virginia. Nam Viet, to whom she once tenuously tied herself in their leap to freedom, is now a chemist. His daughter has recently joined the United States Coast Guard.

“I didn’t know where Michigan was, but I told her I wanted to live close to her.” After visiting, she went to the local education center, met with one of the administrators, and got a job. “I moved from Texas to Michigan with a U-Haul in the back, and continued teaching for one and half years. It was so cold and there was so much snow. I parked my car in front of my apartment and the next day I couldn’t find it.” The northern winters took their toll and soon she applied for and got a job as a GED teacher in Arlington County, Virginia. Only six months later, the local YMCA heard about her talents helping students and hired her as Director of Refugee Services for the Washington metropolitan area. As Director, she began sponsoring refugees from Southeast Asia, and then brought almost a thousand people to greater Washington from Ethiopia, Afghanistan, Laos, Cambodia, and Vietnam. Thuy retired from the YMCA after 26 years of service but her reputation kept her in the game. In 1985, she attended the World Women’s Conference in Nairobi, Kenya, as part of the U.S. delegation, becoming the first former Vietnamese refugee woman from the United States. Two years later she was a member of the U.S. delegation at the second World Women’s Conference in the Bahamas. Her reputation already secure with the Vietnamese-American and other refugee communities at large, Thuy was nominated and then honored in 1989 as a “Washingtonian of the Year.” When asked about her adopted country, Thuy responds without hesitation: “Vietnam and America: I love them both. I was born in Vietnam and I was reborn in this country. It is my land and I will die here.” What does that truly mean for an ex-refugee who remade her life in that new land? Thuy looks ahead to her ultimate wish. Married to retired U.S. Army Major General Victor Hugo, she says, “Someday I would be honored to follow his way and be buried in Arlington Cemetery, the place where all the heroes who sacrificed for our country are buried.

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Reviews Film Review Concussion Written and Directed by Peter Landesman Produced by Ridley Scott, Giannina Facio, Elizabeth Cantillon, Larry Shuman, David Wolthoff Sony Pictures Entertainment Distributed by Columbia Pictures (2015) John Winters, PhD Assistant Professor Sport Management and Recreation Management Bacone College 2299 Old Bacone Road Muskogee, OK 74403 Tel: (918) 781-7241 E-mail: [email protected]

Author Note The opinions in this review are those of the author alone and do not represent the views of the institution or organizations the author serves or with whom is affiliated. The author has no financial conflicts of interest.

Introduction and Background

The movie Concussion, which focuses on the discovery of a previously undescribed medical condition, does not seem to have a large box office appeal on its surface. However for sports medicine professionals, sports ethicists, sports history researchers and football fans it is a cautionary tale. The neurological degradation of the human brain caused by chronic traumatic encephalopathy (CTE) in American football players, and much discussion of its effects, has led the National Football League (NFL) to view the movie’s production as an object horror film. The movie Concussion chronicles the efforts of Nigerian-American forensic pathologist, Dr. Bennet Omalu, from the Allegheny County Coroner’s Office in Pittsburgh, to identify the cause of death of Pittsburgh Steeler great Mike Webster and the efforts of the NFL to suppress the research and findings of his investigation. Many federal government and sports medicine professionals have stepped up their efforts to come to grips with CTE and its long- and short-term medical consequences from head trauma injuries to the many athletes who participate in sports. The Center for Disease Control and Prevention, the National Athletic Trainers’ Association and United States military medical personnel are striving to understand the effects caused by severe or persistent head trauma. Such brain injuries, also known as traumatic brain injuries (TBI), are an important public health problem in the United States (Taylor & Greenspan, 2015). The Department of Veterans Affairs’ brain repository in Bedford, Journal of Health and Human Experience

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Massachusetts, the nation’s largest brain bank, which focuses on traumatic brain injury, reported it had found evidence of degenerative brain disease in 76 of the 79 deceased former NFL players it has examined, and a two-fold increase in the number of cases of CTE. In addition, Christine Baugh and Clifford Robbins published an Opinion statement describing CTE as a unique neurodegenerative disease found in individuals with a history of repetitive head impacts such as those sustained through contact sports or military combat. The preponderance of the medical literature describing CTE has consisted of postmortem neuropathological assessments with retrospective clinical reviews (Baugh & Robbins, 2014).

Film Summary Will Smith portrays the embattled Dr. Bennet Omalu, a forensic pathologist who researched the death of Pittsburgh Steeler Hall of Famer, Mike Webster. Will Smith ably portrays the meticulous work of Dr. Omalu as he seeks to discover the cause of Webster’s tragic death. This thought-provoking film begins with a visionary view into the downward spiraling life of Mike Webster as his life spins out of control. Although Mike Webster sought help from his family, the medical community and his friends about how to deal with the decline of his cognitive and mental well-being, his efforts were to no avail. Regrettably, his life ended tragically, his personal pain unrelieved and never knowing what had happened to his mind. Although the movie production is a feature presentation rather than a documentary, it is based on a GQ magazine article by Jeanne Marie Laskas, a highly respected writer of our time. The movie accurately records the story of the laborious Doctor Omalu who, when assigned to conduct Webster’s autopsy, knew little of the success or the persona of the Steelers center, wonderfully played by the actor David Morse. Omalu worked within the Allegheny County Coroner’s office, presented here as a great sub-plot of the politics and inner-workings of a bigcity coroner’s office. The hard-hitting plot takes a turn as Dr. Omalu delves deep into the root cause of Webster’s death, discovering the little-known condition he named chronic traumatic encephalopathy or CTE. Dr. Omalu compares CTE to wet concrete poured down kitchen pipes, that then hardens in a protein mixture he called tau, a sludge that kills healthy brain cells. The movie follows Dr. Omalu as he tries to negotiate through the legal process, the politics of the coroner’s office, and the repeated attempts of the National Football League (NFL) to thwart his efforts to inform the American public about the dangers of repeated blows to the heads of professional football players. The leading sociological issue of this sports controversy remains the commodification of the professional athlete, especially the players of the NFL.

The movie accurately portrays the personal ethical decisions that must be made by current and future players of combative and competitive sports. The foremost issue is the well-known fact that repeated head blows over the course of a career can leave players with the yet incurable brain disease known as CTE, in what is arguably the most-watched sport in America. This coupling creates an environment in which the NFL, many of its most ardent fans, and the NFL corporate partners appear to be disinterested in making the drastic changes to the game that are necessary to protect their players. This confluence of the increasing knowledge of CTE and the ardent love of NFL football as it now exists, creates an ethical dilemma that may continue, unless those who draw very large salaries to play a game they love withdraw from the game in increasing numbers for fear of causing brain damage that lasts for the rest of their lives.

Reflections Walsh and Giulianotti (2001), in their critique of this notion of the commodification of sport, took the stance that the sport consumers have relented to the view that the sport and its players have been reduced to a commodity that can have an economic value as a central attraction of the sport. Walsh and Giulianotti saw their work as justifying intuitive concerns of many in the sporting public. Walsh and Giulianotti also cited Elizabeth Anderson’s work Value in Ethics and Economics that “a good is commodified either when it is bought and sold or when it is regarded as a thing with monetary value.” However, most sport ethicists believe that Anderson’s narrow definition of commodification undermines the real value of professional football players. The landscape from which sport medicine professionals and sport ethicists view Omalu’s discovery of CTE, and the projected long-term effects from repeated traumatic brain injuries, has led to the firm belief that CTE must be managed and legislated against, thereby hopefully reducing the incidence of CTE in sports at all levels throughout the world.. Along with sports medicine professionals, those of us who study and teach the ethics of sport must commit ourselves to educating players, their families, and the sporting world about the innate hazards of repeated TBIs. This does not imply that we seek the elimination of combative, competitive, or high-risk sports, but that we are duty-bound to give an accurate and data-driven depiction of the potential, life-changing outcomes from these sport activities. These combative and high-risk sports must come with effective and appropriate protocols to reduce the impact of repeated TBIs. The monetary value placed upon the sport of football and other competitive sports has commodified the value of those who play to the point that those in power and authority have competing interests demanding the status quo in regard to how those sports are played. To this point, the battle will be fought vigorously as more is learned about CTE and its life-changing effects.

This movie wonderfully blends the science of traumatic brain injury, the love of football, and the lengths the NFL was prepared to go to deflect, delay or even discredit the groundbreaking work of Dr. Omalu. The emotional impact of CTE upon former players, their families, friends, and associates, and the fans of NFL football are dramatically portrayed in this movie with great effect. The movie Concussion demonstrates the many difficult issues for future football players and for the National Football League. Balancing the value of player performance against concern for health has produced a large number of ethical issues for the League, its current and future players, those who have a monetary interest in football, and the legions of NFL fans. These ethical concerns are applicable to all competitive sports, not just football.

Recently, Caitlin Colitti (2015), a licensed athletic trainer, urged other athletic trainers that work with military personnel to educate Department of Defense parents and their families about current initiatives to promote TBI awareness. There is increasing empirical evidence that traumatic brain injuries from combat can easily be associated with those discovered by Dr. Omalu. Colitti also remarked that “providing this education to parents and other health care professionals within the Department of Defense will help to encourage such positive change and education regarding the efficacy of athletic trainers and the unique skill set we bring to the table (2015).”

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The medical community, players and governing bodies of competitive sports, and ethicists must unite to facilitate an effective and appropriate set of protocols that preserve these sports so loved by so many. As events unfold, sport ethicists, the civil and military medical communities, and current and future athletes must remain vigilant and ensure that all interested parties stay the course. There are socio-economic factors that constrain this movement, yet the mental and physical health of athletes and wounded warriors must be the top priority. We, as interested parties, must encourage in spirit and practice, the search for appropriate rule and policy changes, treatments, and protocols that work toward the eventual eradication of the repeated brain injuries that lead to chronic traumatic encephalopathy. Our ultimate goal is to prevent or lessen the impact of CTE upon American athletes and improve treatment protocols for America’s wounded warriors as they return to our shores after serving our nation.

References

Book Review Claims of Innocence (2010) Michael Naughton, with Gabe Tan University of Bristol UK, 80 pp. Vaughan Caines, MSc, MA in Law (UK) Barrister Marc Geoffrey Barristers & Attorneys, Ltd The Honourable Society of Gray’s Inn Hamilton, Bermuda Email: [email protected]

Anderson, E. Value in Ethics and Economics. Cambridge, MA: Harvard University Press, 1993.

Author Note

Baugh, C. M., Robbins, C. A., Stern, R. A., & McKee, A. C. (2014). Current understanding of chronic traumatic encephalopathy. Current treatment options in neurology, 16(9), 1-13.

This review originally appeared in a periodical published by the United States federal government. As such, the article is in the public domain; and the author as copyright holder has given permission for its updated publication in this edition of the Journal. The views expressed here are those of the author and do not reflect the official policy of the institutions the author serves. The author has no financial conflicts of interest.

Colitti, C. (2015). ATs educate military parents about risks of TBI in adolescent athlete. NATA. Official Blog of the NATA News Magazine. Retrieved February 18, 2015 http:// www.nata.org/nata-news-blog/ats-educate-military-parents-about-risks-tbi-adolescentathlete?page=4. Taylor, C, Greenspan, A, Xu, L, & Kresnow, M. Comparability of national estimates for traumatic brain injury-related medical encounters. Journal of Head Trauma Rehabilitation. 2015; 30(3): 150-159. Walsh, A. J., & Giulianotti, R. (2001). This sporting mammon: A normative critique of the commodification of sport. Journal of the Philosophy of Sport,28(1), 53-77.

Introduction On Tuesday, January 4, 2011, Texas citizen Cornelius Dupree was declared innocent after having spent thirty years in prison for alleged crimes dating back to 1979. According to various news reports, only two other individuals in similar situations had had longer prison terms before exoneration. Originally, Mr. Dupree had been sentenced to seventy-five years in prison beginning in 1980. His exoneration was achieved after DNA testing proved his innocence. Represented by the Innocence Project in the United States, Mr. Dupree’s exoneration is one of any number that now are occurring world-wide due to important advancements of science and technology and their applicability in criminal proceedings and the pursuit of human and social justice. Like Cornelius Dupree, Paul Blackburn spent twenty five years of his life behind bars after being falsely accused of attempted murder and sexual assault. He was only fourteen years old when he was convicted. Though on different continents and separated by an ocean, there is the common thread of miscarriage of justice which binds them and which is present in the collective systems of justice. These cases detail the crucial need for publication of the subject matter contained in this monograph, Claims of Innocence. The cause of obtaining justice for those that are wrongfully accused of any crime is universal, regardless of race, nationality, or any other human category. An injustice to one is an injustice to us all. It is the aim of this review of and commentary upon Claims of Innocence to give readers a cursory yet definite introduction to the interdisciplinary and valued partnership of science and law in approaching possible miscarriages of justice in any judicial system. This review summarizes this work written by authors originally associated with the United Kingdom’s

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branch of the Innocence Project. The monograph was written to provide basic knowledge and resulting advisement on legal applicability including the use of scientific endeavours for those in the United Kingdom who feel they, like Mr. Dupree and Mr. Blackburn, have been wrongfully accused. While individuals reading this review may have widely divergent views regarding various such cases, the central aim of this commentary is to illustrate how forensic technologies and scientific advancements can influence social processes. In this vein, this review of Claims of Innocence, by Dr. Michael Naughton of the United Kingdom Innocence Project, is designed to celebrate the mission of scientific and ethics interdisciplinarity that is central to this edition of the Journal of Health and Human Experience.

Synopsis

Claims of Innocence, published in 2010, is a very short monograph of 80 pages written and published at the University of Bristol in the United Kingdom. It is a short procedural manual designed for individuals who are seeking advice for the potential overturning of wrongful convictions. In its introduction (pp. 1-2) the book illustrates that instructional information is not readily available to individuals who maintain innocence after conviction. The text has been written as a response to this informational gap. It provides critically needed information in three distinct parts. Part 1 is a general overview of the key causes of wrongful convictions. Part 2 details how claims of innocence are dealt with in England and Wales specifically. Part 3 provides enlightenment on the practical routes that innocent victims of wrongful convictions may use in attempting to prove their innocence. Though Part 2 is compelling in and of itself, it admittedly is focused on the utilization of methods localized to the United Kingdom. Therefore, to meet the academic and professional perspectives of various international readers of this review who may have a more general scientific interest, this summary will focus on Parts 1 and 3 alone. These two sections detail key causes of wrongful convictions and the practical remedies in which science can play a vital role to assist the wrongfully convicted to prove their innocence. From its onset the book sets a very sobering tone by describing the lives of individual persons wrongfully convicted. The text describes well the effects that wrongful convictions make on individuals, their families, and society at large. The authors approach this well and vividly through eight different case studies presented as autonomous vignettes (pp. 7-10). By placing a name and face to each of the eight key causes of wrongful conviction, the authors invite the reader to approach these key causes not as an abstract intellectual exercise but something more. The reader is provided with a human face to human injustice. In all of the listed causes of wrongful confessions, by way of commentary within this review it is interesting to note that science can play a direct role in combating or confirming the existence of each. The powerful role of science in criminal law is a fascinating field of inquiry. While it is not its intention per se, this monograph calls important attention to this reality. However there is a cautionary tale to be heeded and it is found in the text in one of the categories, namely that of flawed expert evidence.

Due to the development of this cultural adulation of forensic science, some members of the public believe that the involvement of forensics in a conviction absolutely substantiates the correctness of the conviction itself. This is not necessarily so. It is sometimes easy in the popular imagination to forget that scientific data must be validly interpreted. Science is fundamentally an interpretative act. Scientific data can be interpreted in multiple ways. Therefore, it can be misapplied or misused depending on context. With advances in science, it is possible to piece together information to provide a more complete timeline concerning proximity and location, with the aim of exonerating or proving the conviction of an individual (pp. 50-54). As all would readily realize, this applicability of scientific knowledge has great value. Yet, especially in the sensitive areas of exoneration, scientific knowledge and scientific evidence require rigorous testing and validation. Claims of Innocence illustrates the importance of such validation and calls for extremely careful, stepby-step re-examination of retained evidence when looking to the exoneration of a person wrongfully convicted of a crime. As the monograph illustrates, a large portion of any case is evidentiary in nature. To reverse the presumption of guilt in wrongfully accused cases, as the text states, one must “…actively find evidence… or produce new evidence” that could positively establish innocence in a particular case (p. 45). As the text discusses the interaction of law with scientific expertise, false witness testimony, faulty witness identification, and forced/coerced confessions can be refuted. Yet the text warns: “much of forensic science and expert testimonies are far from foolproof ”... and the overturning of cases (involving forensic science) “demonstrate(s) the limitations of such forms of evidence” (pp. 45; 50) Valid conclusions must be based upon valid and accurate interpretation. The process is not simply “black and white.” Depending on the expert and the use of the data, different conclusions can arise from the same data. Therefore, the power of science in the social processes of law and legal justification is not automatic. The text rightly calls attention to the need for scientific rigor and analysis. Proceeding from this attention to scientific rigor and analysis, the monograph gives a concise but informative framework regarding general principles of forensic science as well as their limitations and the context of these principles themselves (p. 50). The text expertly explains how law utilizes science as an aid. It discusses the critically powerful academic and professional impact of the National Academy of Sciences in the field of forensic science (p. 51). The text skilfully details forensic scientific vocabulary when used by professionals in oral or written conclusions, and the different ways such vocabulary can be construed. The text also provides pertinent prudent advice for avoiding conflictual analyses (p. 51). Much of this material is an excellent summary especially for individuals who are laypersons regarding forensic science or even the physical sciences in general.

In this one area, the book uses the case studies of two individuals to describe how science initially “got it wrong” (p. 10). These two case studies illustrate a definite need to demystify a contemporary and very unscientific fascination that is often attached to forensic science.

As a specific instance regarding the above, when a layperson thinks of law utilizing forensic science, an assumption can many times be made that forensic science is equated with the discriminating power and finality of DNA analysis for outcomes. Yet, this assumption is not completely valid. Indeed, the power of DNA in legal proceedings is indisputable. The text chronicles the number of DNA exonerations in the United States and the United Kingdom since 1989 therefore illustrating the scope and power of DNA science (p. 52). However Claims of Innocence strongly invites the reader to consider carefully the critical context of information obtained in DNA analysis, specifically as it pertains to the particulars of each case (p. 54). This

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Reviews clearly underscores the need for correct contextual evaluation and scientific interpretation. This point cannot be stressed enough. DNA forensic practitioners are acutely aware that, though the science indicates the presence or absence of a specific genetic profile, it is not up to the scientist to infer or imply guilt or innocence. That is the purview of the fact-finder in a court of law. The domain of the forensic scientist is to analyse the material, collate the data, present the facts of that material in report or oral form, and then explain the possibilities of the data in the social context highlighted by each individual case. Illustrated in sections beginning with page 50, the text aptly addresses the harnessing of science by law and the power of science to provide law itself with a greater illumination of events and their circumstances in a methodical, systematic, logical and precise context. Law uses the practical exacting authority of science to bolster social policy. Within this social context, science also has the ability to exonerate as it previously had been used to convict. The remainder of Claims of Innocence explains to its intended readership and expounds upon the details needed to choose legal representatives wisely and the utilization of alternative methods such as Innocence Projects and the media to help in working on any case. The structure is concise and clear, yet contains practical applicable information, enabling the reader to digest and understand such an overwhelming topic in palatable portions.

Conclusion

The aim of Claims of Innocence is to illustrate the key causes of wrongful convictions, and the problems faced by those seeking to regain their innocence in the face of a system that considers them to be guilty with limited opportunities to prove their innocence. The text also looks at practical pathways by which alleged innocent victims of wrongful convictions might prove their innocence. For the purposes of this review itself, the text illustrates well how science is an invaluable tool for social processes. Science can be used to level the cultural playing field as its ethos is based on verifiable physical principles. The pure scientific equation is an invaluable objective resource for social policy, especially for law. Due to its inherent rigor and basis upon proofs and repeatability, the impartiality of science’s examination of facts is a perfect complementary partner for law. As this review points out, this is not to say that scientific analysis in and of itself has no possibility of error. Such is not the case. Claims of Innocence demonstrates that quite well. The possibility of error is indisputable. Yet what is equally indisputable is the essential and profound value that scientific analysis gives to the pursuit of law. In the cases found in Claims of Innocence, the specific value of forensic science is unquestionable. While a text written as a manual of procedures for a special readership, namely those seeking to prove their exoneration, Claims of Innocence indeed has a value for the general reader. The text gives an individual a clear and cogent way by which to view “science in action.” It shows the cultural value of science generally and forensic science in particular. It does so with a cultural corrective to popular misconceptions of forensics as an absolute imprimatur of truth. Presented within the sensitive context of human rights, Claims of Innocence gives readers the rare opportunity of becoming caught up in forensic science as a culturally powerful tool whether for ill or for betterment. Readers therefore should enter the text with as much care and prudence as the text reminds them is necessary for the pursuit of justice. 166 Volume II, No. 1

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Under City Lights Reviews Immersion: The Experience of Belonging Reflecting on the Ethos Experience of Healthcare Dr. Edward Gabriele Editor-in-Chief and Executive Director, Journal of Health and Human Experience President and Chief Executive Officer, The Semper Vi Foundation Distinguished Professor (adj), Graduate School of Nursing Uniformed Services University of the Health Sciences Tel: (301) 792-7823 Email: [email protected]

Reflecting….. Many years ago when I was much, much younger, I was taught that the last place I needed to be in life was in an ivory tower. Each time I went to study, the schools I attended had just happened to put into place an “immersion” requirement. While continuing strict programs of traditional study, the curriculum was expanded to make sure that students engaged in supervised internships that required them to be out in the streets, so to speak. Their experiences were “unpacked” during group seminars for their impact on their lives as future professionals and as persons. As you can imagine, the pain and disdain of those of us newly-required to engage in these experiences was deep and as meaningful as were the experiences we were supposed to be obtaining! I hated it. Every minute of it. Yet somehow I knew deep inside me that this place of my resistance was to be one of the most important parts of my total education and formation as a human being. Over the years, as you might expect, the essential lesson took root. In fact, in the last years of my life, I found myself needing to get out of my healthcare workplace and remind myself what it is I am “really” supposed to be doing with my life, where I am really being called, and who I am really supposed to be serving. It is easy to get caught up in paper and pen, in strategy and tactic, in metric and measured unit, in policy and procedure, in seeming prestige and the fleeting importance of governmental status and power. Yet these are, in the end, not the “End” at all. One day a few years ago, it struck me that what I needed to do was go out and simply “be” with the women and men who come to our hospitals and clinics in search of healing and wholeness. Quietly I began to make my way, perhaps every other week, to various clinics and hospitals I served to be in the presence of those who came for care. I hid my official badge, “dressed down” for the occasion, and just walked through, sat in waiting rooms, breathed in the experience, drank in the moment. Oh yes, there was the occasional person who recognized me. I had to quiet them very suddenly! I also have had to tell them pretty emphatically that my purpose being around was not to “check up” on anything or anyone. If anything, my purpose for being in the area was for me to check myself in to the real reason I do what I do in my life.

Clark Reynolds, 3, is greeted by President Obama during a Black History Month Celebration held Feb.18, 2016, at the White House in Washington, D.C. (Pete Souza/White House)

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One day, while I was walking down the hallway in one of our hospitals, going from one wing to another, something extraordinary occurred. I was just part of a larger group of people passing by each other. And then it happened. It came out of the blue, as these things always do. A middle-aged gentleman appeared. I have no idea whether he was an employee or a volunteer or a patient. His walk revealed that he had perhaps, at some point, suffered a stroke or a head injury. The left side of his body was less than able. As he walked --- or more accurately, limped ---- his left leg and foot dangled askew. He was on the other side of the hallway walking toward me. He stared right ahead. Yet somehow I must have been in his peripheral vision. I did not know him. In fact, I myself had hardly noticed him. But something must have caught his attention and I have no idea what or why. As he neared, he seemed to change his position so that he looked as if were walking right at me. He slowly raised his dangling arm and trembling hand. Instincts took over. He high-fived me. I high-fived him right back. His head nodded slowly. And he just kept on walking. I stopped, turned, looked after him as he continued down the walkway. He never looked back. It was over in the flash of a moment.

Yet do we do the same for one another? Sometimes we fear to do that which we crave and need the most! Interesting. Many human stories remind us that the search for the Divine begins in the straw of human living. It begins in the simplicity of what it means to be born, to touch, to embrace without prejudice, without agenda, without calculating the cost. This is the immense journey within. The real immersion. The experience of belonging. The immersion into the self that allows us to ask how deeply do we love. How much will we sacrifice that others might live? How courageous can we be to be truly ethical. Not ethics as in adherence to regulations.

Or was it? A hospital aide came up behind me and wanted to know if something were wrong. I told him no. I told him that, in fact, things could not have been more “right.” For there right in front of me was the living reminder of what I am really called to do with my life. See.

No. Ethics as in “ethos,” namely the fundamental character of what it means to be human and to learn to touch all whom we meet with value and care. This is the immersion that is needed. An immersion into the depths of what it means to be human.

Recognize. Move toward.

And yes, on occasion, in a hallway filled with surprises, we just might meet One whose dangling is a strength never thought possible.

Touch. Care.

Wishing you an immersion --- learning to belong.

Not metrics. Not policy. Not regulations. Not commendations. Not the bullets in evaluations I too often think are the important part of my life and career.

And may our unfolding days find us more courageous to “dangle” with each other so as to be immersed with those we are really called to serve!

Touching and allowing oneself the thrill of being touched. These are the really warm gifts that surprise us in the cold winters of our lives. And it is in these moments that one can sense the centuries old traditions of human spirituality that remind us that the road to Divinity does not happen in dogma. The road to Divinity is within our humanity, within our very flesh, our human experience, our touching. The Utterly Other touches us.

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Under City Lights Reviews

Under City Lights Reviews belonging left arm slowly raised elbow bent hand stretched upward fingers slightly parted tremor gait slow leg dangles foot quivers the injury how old not known eyes fixed straight head mine in periphery but that hand nearing to my eyes instincts five hits five gait never broken continues down the hallway looking all searching the same comfort healing touch all occurring together found one place walking one place searching one place lifting hands to touch to be touched sensing here one place belonging

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Retired Master Chief Petty Officer James “Will” Wilson, right, congratulates retired Boatswain’s Mate 1st Class Andre C. Shelby from Team Navy/Coast Guard after hearing the announcement that he won the gold medal in the compound archery competition during the second annual Warrior Games. Warrior Games is a Paralympic-style sport event among 200 seriously wounded, ill, and injured service members from the U.S. Army, Navy, Air Force, Marine Corps, and Coast Guard. (U.S. Navy photo by Mass Communication Specialist 1st Class Andre N. McIntyre/Released) Retrieved from Wikimedia Commons on 4/4/2016.

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Prepared by Graphic Arts and Publishing Services at The Henry M. Jackson Foundation for the Advancement of Military Medicine, Inc.

Einstein 1921 by F Schmutzer

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