UCSF UC San Francisco Electronic Theses and Dissertations Title Ethics and Politics of Caring and Curing: The Case of Down Syndrome and Alzheimer Disease Permalink https://escholarship.org/uc/item/21k037c8 Author Pohlman, Elizabeth Grace Publication Date 2010 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California Copyright 2010 by Elizabeth Grace Pohlman ii ACKNOWLEDGMENTS No anthropological project would be possible without the people who participated in making it. I am indebted to those who spent time with me in interview and conversation, and who let me in to observe their meetings and other collaborations. In equal measure, I am indebted to my academic mentors, who witnessed me through my intellectual process and catalyzed all sorts of lessons, intended and unintended. Among these, I am especially grateful for the insights and friendship of Patrick Fox, Co-director of the Institute for Health and Aging at the University of California San Francisco, who served as my dissertation committee Chair. His constant encouragement made an important conceptual space for doubt, confusion, and creativity. I could not have designed a better mentor for my research process. In addition to Patrick Fox, I have appreciated the other members of my dissertation committee to a great extent: Lawrence Cohen, University of California Berkeley; Christie Kiefer, University of California San Francisco; and Dorothy Porter, University of California San Francisco. Their unique perspectives and support sustained me throughout the research and writing adventure. However, academic support seldom ends at the boundaries of one’s committee. I have been also been blessed with many others who have expressed interest in my work and helped me on my way. I include among these Vincanne Adams, Sharon Kaufman, Adele Clarke, Guy Micco, Judith Barker, and Linda Mitteness. Administrative supporters, Claire Dunne and Kimberly Bissell, organized the endless requirements of deadlines and forms. At the University of Arizona, I benefited from the mentorship of the late Theodore Koff, Mark Nichter, Ana Ortiz, and Susan Phillips. At the University of Minnesota, I enjoyed learning from Kathy Barlow, Tim iii Dunnigan, and especially Professor Mischa Penn. I want to thank Paul Rabinow, University of California Berkeley, for his kind recognition of my intellectual naïveté. The late Gay Becker, with whom I worked for two years as a graduate research assistant at the Institute for Health and Aging at UCSF, encouraged my initial impulse to apply to the UCSF-UCBerkeley Joint Program in Medical Anthropology. My first meeting with her at the annual AAA meetings in 2000 was the catalyst for the doctoral challenge, and I remember her very fondly. My doctoral coursework was supported with generous funding from the University of California San Francisco Graduate Dean’s Health Science Fellowship and Regents Fellowships. The field research and writing for this project were supported by the Agency for Health Care Research and Quality Health Services Research and Training Program Pre-doctoral Fellowship, supported by grant number 5 T32 HS000086. My fellowship mentor, Dan Dohan, was a valuable support during the fellowship. I also benefitted from the numerous opportunities for presentation and interdisciplinary interaction this fellowship offered me. Fellow students I met along the way enhanced my experience. I especially thank Ben Hickler, Ippolytos Kalofonos, Jennifer Liu, and Thurka Sangaramoorthy all from the University of California San Francisco and my class cohort. At the University of Arizona, I remember my colleague and fellow student Deb Wilkerson, whose integrity and stamina awed me. Her untimely death was a potent reminder to enjoy all that is. And last but not least: family. My very impulse to education is grounded in my family’s youth, when education was valued. I have my parents, and their parents, to thank for that. Recently, I have sustained support from my aunts Anne and Susan. My brother iv Greg Horton, actor extraordinaire, has been my comrade in navigating our parents’ respective complexities. The treasure we found was our friendship. My husband Don, with whom it has been a joy to share my life, suffered through this adventure as only a partner can - on the frontlines of care. It was he who endured the vicissitudes of graduate school with me, from uncertainty and doubt, to hope and completion. I dedicate this dissertation to my great-aunt, Alice Schilling. She wished for me to get an education. Alice was my muse in the midst of uncovering what that might actually mean. v ETHICS AND POLITICS OF CARING AND CURING: THE CASE OF DOWN SYNDROME AND ALZHEIMER DISEASE ELIZABETH GRACE POHLMAN ABSTRACT This anthropological project investigates the confluence of social advocacy, science, and medicine as it relates to cognitive difference or disability for two conditions: Down Syndrome and Alzheimer’s Disease. Grounded in multi-sited ethnographic methods, this research includes observation and interview in laboratory and clinic, conference, workshop, residential, advocacy, fundraising, and legislative sites. This dissertation tells two stories. The first details the emergence of cognitive enhancement for individuals with Down Syndrome. This is a relatively new endeavor for scientific study that is growing from within research on Alzheimer’s Disease and its genetic risk factors. As advocates contemplate the possibility of cognitive enhancement through pharmaceutical means, their encounter with ethical concerns poses novel predicaments, potentially altering an advocacy politics previously devoted to care and change in cultural attitudes towards Down Syndrome. Drawn into this narrative is the unique pressure that prenatal testing and abortion represent in the lives of those living under the description of Down Syndrome. The second narrative tracks new representations of Alzheimer’s Disease, made possible through the activities of science and medicine and resulting from diagnosing Alzheimer’s Disease at its earlier stages. This shift has led not only to the creation of more patients, and more subjects for research, but also the possibility that individuals vi diagnosed with Alzheimer’s Disease might represent themselves publicly. This is a sea change in the advocacy movement associated with the disease, and also carries the potential to alter advocacy politics and its commitments to curing disease. This dissertation details the paths advocates are arguing and practicing in their pursuit of recognition and justice in these two scenes of advocacy. I explore their interactions with science and medicine, and with scientists and medical doctors. This work is important because it illuminates the continuing power of normality and competence in everyday life, and the pressures it brings to bear on those caught in its crosshairs, individuals living under descriptions associated with abnormality and incompetence. vii TABLE OF CONTENTS PROLOGUE...........................................................................................................1 CHAPTER ONE: MAKING RESEARCH ..........................................................3 Background .........................................................................................................4 Choosing ..............................................................................................................6 Designing and Doing...........................................................................................7 When Ethnography Blurs ................................................................................12 Writing...............................................................................................................14 Chapter Overview.............................................................................................16 Anthropological Experiments..........................................................................19 CHAPTER TWO: MAKING DISEASE..............................................................23 Medicalization and Biomedicalization, Neurodiversity.................................27 Is It Alzheimer’s?..............................................................................................42 What Is Down Syndrome? ...............................................................................52 Down Syndrome and Alzheimer’s Disease .....................................................60 Caring and Curing: Medicalization Dilemmas ..............................................65 CHAPTER THREE: MAKING HUMAN...........................................................68 Being and Becoming Human ...........................................................................70 J. Langdon Down and His Ideas......................................................................74 viii Human or Non-human? Life at the Borders ..................................................81 Asserting Human Status...................................................................................86 Genetics Discourse as a Strategy of Advocacy ...............................................87 ACOG: Prenatal Testing................................................................................103 Cognitive Disability Under Another Description.........................................110 CHAPTER FOUR: MAKING MEMORY......................................................112 Memoro-Politics ..............................................................................................113