Living with Leprosy: Carville Patients in the Early Twentieth Century A THESIS SUBMITTED TO THE FACULTY OF THE GRADUATE SCHOOL OF THE UNIVERSITY OF MINNESOTA BY Vicki L. Pierre IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS Name of Adviser: John Eyler June, 2012 Copyright Vicki L. Pierre, 2012 Acknowledgements Without the encouragement and assistance of many teachers, colleagues and friends, I would never have been able to pursue my degree and complete this thesis. I am especially indebted to my teachers, John Eyler and Jennifer Gunn for their unfailing support and sage guidance. I owe a special thank you to my colleagues Kelly Kruzel and Sheri Halverson for their gracious assistance in reading and providing comments on this thesis. Finally, I owe a debt of gratitude to my employer, Medtronic, and especially Kathy DiGiorno, my former supervisor at Medtronic. It was Kathy’s support that made it possible for me to work full time while pursuing this degree, and it was her recognition that the study of the history of medicine could be of use in my legal work with clinical trials that allowed me to obtain tuition reimbursement for my studies. i Table of Contents Introduction .................................................................................................................... 1 Chapter One - Leprosy ................................................................................................... 5 History of Leprosy ....................................................................................................... 5 Diagnosis and Transmission ......................................................................................13 Classification of Leprosy ............................................................................................14 Current Incidence of Leprosy in the World .................................................................16 Chapter Two - Stigma ....................................................................................................18 Chapter Three - Leprosy Stigma in the ..........................................................................22 Early Twentieth Century Chapter Four - History of Carville ..................................................................................29 Chapter Five - Diagnosis ...............................................................................................35 Betty ..........................................................................................................................36 Stanley .......................................................................................................................37 Johnny .......................................................................................................................40 D.J. ............................................................................................................................41 José ...........................................................................................................................43 Edmond .....................................................................................................................45 Chapter Six - Life at Carville ..........................................................................................49 Chapter Seven - Leaving Carville ..................................................................................70 Chapter Eight - Closing Carville .....................................................................................78 Conclusion ....................................................................................................................80 Bibliography ..................................................................................................................85 ii Introduction Few diseases have been subjected to as much social stigma over as long a period in as many different societies as leprosy.1 Particularly in times of great social change, leprosy has the ability to become more than itself, to engender fear in people out of proportion to its actual danger to society.2 This was true in the United States in the early twentieth century, when, though the number of leprosy patients was small, significant attention and resources were spent addressing the problem of leprosy. The religious, cultural and medical aspects of leprosy made it a “disease apart.” In his introduction to The Medieval Leper, Peter Richards wrote, “People are the theme of this book – people beneath the notice of history but for their disease: leprosy, or the suspicion of it, is their only claim to fame.” 3 The theme of this paper is similar, to examine how leprosy patients in the United States in the early twentieth century experienced the stigma of their disease. I will look at the increased political and social interest in leprosy in the late nineteenth and early twentieth centuries in the United States, and how this increased interest produced a public health response that greatly affected leprosy patients; and I will show that the medical, political and social reactions to leprosy in the early twentieth century caused leprosy patients to continue to be stigmatized. 1 Margaret A. Wheatley, “Leprosy: A Disease Apart, Historical and Cross-Cultural Analysis of, A Historical and Cross-Cultural Analysis of Stigma” (Ph.D. dissertation, Carleton University, June, 1985): 2. 2 Rod Edmond, Leprosy and Empire, (New York, Cambridge University Press, 2006), 1. 3 Peter Richards, The Medieval Leper, (Barnes and Noble, 1977) vii. 1 To see how leprosy changed the lives of people who suffered with the disease, I will examine the autobiographies of five leprosy patients, Stanley Stein, Betty Martin, Johnny Harmon, D.J. LeBeaux and José Ramirez, all of whom lived at the only leprosarium on the U.S. mainland in the twentieth century, the U.S. Marine Hospital 66 at Carville, Louisiana, referred to as simply, “Carville.” I will also use the PhD dissertation of Emma Claire Manes, which relates the story of the Landry family (her mother’s family). Manes' grandfather and all of his siblings were diagnosed with leprosy and were sent to Carville. For these authors, the diagnosis of leprosy became the most important fact in their lives; their claim to fame. Their stories describe how the stigma of leprosy affected their lives. These autobiographies were published between 1950 and 2009. Book length autobiographies, written by people with serious illnesses, called autopathographies by G. Thomas Couser, were uncommon before 1950 and almost unheard of before 1900.4 Couser described the factors that compelled writers to write autopathographies; to de- stigmatize the illness and to extend identity politics (the tendency to identify individuals with certain groups such as race or gender of which they are members) to illness. Couser found diseases that are particularly threatening or “fraught with cultural significance” tend to result in a large number of autobiographies. Illness narratives, Couser stated, reflect mixed motives: self-expression and, “a desire to serve those with the same condition.”5 Betty and José both expressed this last motivation in the prefaces to their books. As historical sources, the quality of the autobiographies vary significantly. Stanley’s book, perhaps because he was potent force at Carville, is as much a history of 4 G. Thomas Couser, Recovering Bodies, (Madison, University of Wisconsin Press, 1997) 5. 5 Couser, Recovering Bodies, 5. 2 Carville and a critique of societal attitudes about leprosy as it is an autobiography. In her books, Betty, while primarily staying with her own story, is able to move beyond her own experience and convey the experiences of her fellow leprosy sufferers with insight and compassion. She is also able to convey in a very direct way the effect that the stigma of leprosy had on her and her husband’s lives. José not only discusses his experience with leprosy, but gives insight into his Hispanic heritage. DJ’s and Johnny’s stories concentrate primarily on how leprosy affected their lives and are less insightful and do not look beyond their own experiences. Looking at the lives of leprosy patients is important for several reasons. Though leprosy never infected large numbers of people in the United States, it became a real fear for people in the United States in the late nineteenth and early twentieth centuries, a period during which the germ theory emerged, the colonization of Africa, Asia and other tropical areas by Western nations was increasing, and masses of people were migrating around the world.6 Decisions made by doctors and U.S. public health professionals during this period had a profound effect on the lives of leprosy patients. In many cases, these decisions exacerbated the stigma leprosy patients faced. It is important for historians of medicine to explore the impact that public health policies had on the people afflicted by the conditions the policies were meant to address. The stigma of leprosy is often used as a starting point to examine other stigmatizing diseases, especially HIV/AIDS. In the early years, AIDS was often referred to as the leprosy of the twentieth century, and AIDS patients felt they were treated as lepers. 7 Until the cause and 6 Zachary Gussow, Leprosy, Racism, and Public Health, Social Policy in Chronic Disease Control, (Boulder: Westview Press, 1989): 19. 7 Douglas Shenson, “When Fear Conquers: A Doctor Learns About AIDS From Leprosy,” New York Times, February 28, 1988, http://query.nytimes.com/gst/fullpage.html?res=940DE1DD1738F93BA15751C0A96E948260&se