Seeing the Difference: Conversations on Death and Dying THE DOREEN B. TOWNSEND CENTER FOR THE HUMANITIES was established at the University of California at Berkeley in 1987 in order to promote interdisciplinary studies in the humanities. Endowed by Doreen B. Townsend, the Center awards fellowships to advanced graduate students and untenured faculty on the Berkeley campus, and supports interdisciplinary working groups, lectures, and team-taught graduate seminars. It also sponsors symposia and conferences which strengthen research and teaching in the humanities, arts, and related social science fields. The Center is directed by Candace Slater, Professor of Spanish and Portuguese. Christina M. Gillis is the Associate Director. SEEING THE DIFFERENCE brings together the texts of a two-day institute on Death and Dying, aimed at facilitating active involvement on the part of diverse attendees from the Arts, Humanities and Medical Practice. Differing conceptual frameworks offer different ways of understanding the dying body: the medical view of the body as a literal text for physical change, the humanist’s view of the boday as the site of complex layers of meaning, and the artist’s creation of the body in terms of alternative explanatory systems. A video of highlights from the Seeing the Difference institute (Seeing the Difference: Conversations on Death and Dying) is also available through the Townsend Center. Begun in 1994-95, the Occasional Papers make available in print and on-line some of the many lectures delivered in Townsend Center programs. Additional support for this special issue was provided by the Walter and Elise Haas Fund and by the Barbro Osher Pro Suecia Foundation. The series is registered with the Library of Congress. For more information on the publication, please contact the Doreen B. Townsend Center for the Humanities, 220 Stephens Hall, The University of California, Berkeley, CA 94720-2340, http://ls.berkeley.edu/dept/townsend, (510) 643-9670. Occasional Papers Series Editor: Christina M. Gillis Assistant Editor & Production: Jill Stauffer Cover photo: Jim Goldberg Printed by Hunza Graphics, Berkeley, California All texts © The Regents of the University of California and the Doreen B. Townsend Center for the Humanities, 2001. No portion of this publication may be reproduced by any means without the express permission of the authors or of the Center. ISBN 1-881865-24-X and 1-881865-25-8 Occasional Papers of the Doreen B. Townsend Center for the Humanities, no. 24-25. Contents Preface v Session One: Silence, Art and Ritual Editor’s Note 3 Jim Goldberg 5 Sandra Gilbert 13 Gary Laderman 25 Comment: Jodi Halpern 36 Discussion 41 Session Two: Time—Counting the Moments/Making Moments Count Editor’s Note 53 Debu Tripathy 55 Michael Witmore 59 Lawrence Schneiderman 65 Comment: Guy Micco 71 Discussion 77 Session Three: Vision—Confronting the Margin Editor’s Note 93 Panel Chair: LaVera Crawley 95 Thomas Cole 97 Frank Gonzalez-Crussi 104 Comment: Patricia Benner 112 Discussion 119 Session Four: Speech/Finding the Language Editor’s Note 131 Shai Lavi 132 Darcy Buerkle 135 Elizabeth Dungan 137 Discussion 140 Appendix One: Conference Program 157 Appendix Two: Conference Participants 159 Appendix Three: Conference Speaker Bios 161 Preface: “Seeing the Difference/Seeing Differently” Just in case you thought experience and the representation of experience melted into one another, death provides a structural principle separating the two…. See the difference. —Regina Barreca, “Writing as Voodoo: Sorcery, Hysteria, and Art”1 Seeing the Difference, the two-day institute whose proceedings are included here, took its title from Regina Barreca’s notion of “difference” but evolved from the Center’s long-term concerns with aging, social suffering, death and dying. Both on our own, and in collaboration with other units such as the Human Rights Center and the Institute for International Studies, the Townsend Center has continued to be expressly concerned with the tensions between the moral orientation that these topics demand of the humanities and the pragmatic orientation so often applied to them. Our object is to seek grounded responses and humanely valid ways of refiguring the predicaments of our time. We were well aware of the problems that plague inquiry related to severe illness and death. One thinks of Walter Benjamin's addressing the incongruence between the concept and event of death and the multiplicity of approaches— avoidance, repetition, metonymy, particularized description of historical moments v and events—we bring to it2; as well as of Zygmunt Bauman's observation that modernity did not conquer mortality, it “categorized the knowable techniques and practices of measurable efficacy and effectiveness.”3 In Bauman’s terms, we humanize mortality by viewing it as a set of problems. We seek an “enemy” and kill it. We turn to “projects” that we can handle and thereby attempt to give ourselves a sense of mastery over reality. The aim of Seeing the Difference was to explore the techne of dying, representations of death, and what one might call an ethics of dying; but it accepted at the start a double sense of “difference”: Barreca’s view of death as separation or “difference” (a “structural principle”), and our own acknowledgement that we, in our various disciplines, also view death “differently” and develop languages that are too often particular to our own fields. Dying bridges a no man’s land where the unfathomed and the unknowable confront the scientific and the humanistic imaginations. While death may be the vanishing point of medical knowledge and representation, it is also a point of mediation. Neither doctors nor humanists, nor artists nor policy makers, can provide answers where death is concerned; any inquiry into its cultural, scientific, and perhaps even spiritual contours must be a plural one. My aim in planning Seeing the Difference was to bring together three angles of perception: those of clinicians, humanists and artists. These conceptual frameworks offered in turn different ways of understanding the dying body: the medical view of the body as literal text for implementing physical and psychological change; the humanist’s view of the body as the site of complex layers of meaning to be explored through a range of interpretive strategies; and the artist’s creation of the body in terms of alternative explanatory systems that may mediate between the physical and the metaphysical, that may confront an “unknowable” or “inexplicable” and give it form. Seeing the Difference explored the boundaries and the connections that pertain among these three different sites of knowledge and interpretation. Through the two days of discussion, participants joined in an effort to clarify their own understandings and to work toward the conceptualization of new forms of empathy towards those who face imminent death. It is not at all incidental that this was an extraordinary group of people. I knew many of the resource speakers from earlier vi occasions at the Townsend Center, and there was no doubt that these people would bring the best of their professional experience and understanding to our discussions. But the participants were also extraordinary. Exploring the net and using electronic lists, the Townsend Center staff was able to attract participation from people who were not part of our regular constituency, individuals in a range of professional locations— including social services and health-related professions—who could bring to the institute experience and points of view that might be different from our own. The ultimate purpose of Seeing the Difference was to produce, in video, print, and on-line formats, a record that could be used in other settings where practitioners are trained to work with the dying . Our project was in one sense about what cannot be figured: in the words of Dr. Frank Gonzalez-Crussi, one of our speakers, it was about absence or “negative space”; and it was about silence and the liminal. As the participants learned too, however, the institute was really about "making meaning" of what all too often appears to be meaningless. Seeing the Difference preceded by over a year the events of September 11, 2001. But now, with those events inscribed in our minds, imaginations, and even our history, and with the necessity of dealing with loss and emptiness on an enormous scale, our project's goal of finding meaning, of using multiple lenses to "see," seems all the more crucial. —Christina M. Gillis Associate Director, Townsend Center for the Humanities Notes 1 Quoted in Death and Representation, edited by Elisabeth Bronfen and Sarah Webster Goodwin (Baltimore: Johns Hopkins University Press, 1993), p. 174. 2 Ronald Schleifer, “Walter Benjamin and the Crisis of Representation: Multiplicy, Meaning, and Athematic Death,” in ibid., p. 313. 3 Zygmunt Bauman, Mortality, Immortality, and Other Life Strategies (Stanford: Stanford University Press, 1992), pp. 152, 163. vii viii Session One Silence, Art and Ritual Seeing the Difference 1 Editor’s Note Session One We begin our exploration of “seeing the difference” in a session entitled “Silence, Art and Ritual.” Launching the institute with a specifically visual example, photographer Jim Goldberg prefaces his presentation with a moving series of images of individuals he had photographed some years earlier in a Boston nursing home. Goldberg then moves on to show and discuss his work on the death of his father, an amazing series which had been commissioned for an exhibit organized by the National Hospice Organization (Hospice) for the Corcoran Gallery of Art in Washington, D.C. (later published in the catalogue entitled Hospice: A Photographic Inquiry). His parents had agreed to the Hospice photo- graphs, Jim explains, because they “wanted to help people.” As both son and photographer Jim “saw” his father’s death. In readings from diary entries he made in those final days of his father’s life, as well as the images he shot, Jim explores the difficulties inherent in those dual roles.