Coping with Vision Loss This page intentionally left blank Coping with Vision Loss Understanding the Psychological, Social, and Spiritual Eff ects Cheri Colby Langdell, PhD and Tim Langdell, PhD Copyright 2011 by Cheri Colby Langdell, PhD and Tim Langdell, PhD All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, except for the inclusion of brief quotations in a review, without prior permission in writing from the publisher. Library of Congress Cataloging-in-Publication Data Langdell, Cheri Colby. Coping with vision loss : understanding the psychological, social, and spiritual effects / Cheri Colby Langdell and Tim Langdell. p. ; cm. Includes bibliographical references and index. ISBN 978-0-313-34664-4 (alk. paper) — ISBN 978-0-313-34665-1 (eISBN) 1. Vision disorders—Psychological aspects. 2. Blindness. 3. Medicine in literature. I. Langdell, Tim. II. Title. [DNLM: 1. Blindness—psychology. 2. Adaptation, Psychological. 3. Medicine in Literature. 4. Spirituality. WW 276] RE91.L35 2011 617.7—dc22 2010041475 ISBN: 978-0-313-34664-4 EISBN: 978-0-313-34665-1 15 14 13 12 11 1 2 3 4 5 This book is also available on the World Wide Web as an eBook. Visit www.abc-clio.com for details. Praeger An Imprint of ABC-CLIO, LLC ABC-CLIO, LLC 130 Cremona Drive, P.O. Box 1911 Santa Barbara, California 93116-1911 This book is printed on acid-free paper Manufactured in the United States of America For Sybil, Melissa, and Alene; Sebastian and Anna; and all our family, together with Eva and Kathy, who greatly inspired and assisted us, and for other friends and colleagues who contrib- uted to this book. Dedicated to the blind community and to the memory of Mary, Ed, Rudy, and Ted, with love. “We see by means of something which illumines us, which we do not see.” –Antonia Porchia, Voices Contents Acknowledgments ix 1 Introduction 1 2 A Brief History of Blindness in World Literature 23 3 Original Fiction by the Blind 69 4 The Blind Writing about Blindness 93 5 The Spiritual Dimensions of Blindness 129 6 Current Insights into Visual Impairment and Vision Loss or Change 151 7 Conclusion 163 Appendix: List of Useful Links and Resources 165 Works Cited and Consulted 169 Index 175 This page intentionally left blank Acknowledgments For their help and support while we wrote this book, we wish to thank Fernanda and Paul Schmitt and the staff and children of the Blind Chil- dren’s Center in Los Angeles. We also thank the Reverends Melissa Langdell and Alene Campbell for their interest, assistance, and encour- agement while we were writing it. And we thank Annina Arthur for her always brilliant, pertinent suggestions as well as Rahima Nizic-Bonner for her spiritual and moral support. We also thank Kathy McCloskey, Dr. Evangelina de Mirande, and Cecelia Moore, who came to the rescue. Many thanks, too, to Drs. Ibrahim Jaffe, John Laird, and Randy Nur Hrabko, to Nura and Bill Mansfi eld, Rahima Wear, Amina Stader-Chan, and other members of the faculty, staff, and student body of the U.S.H.S., particularly to Saida, Hamda, Halima, Rahim, Rahima, Lourdes, and other members of the second year class of 2010–11. We thank the faculty of National University for their help and brain- storming, and the English Department faculty at the University of Cali- fornia, Riverside, for their intelligent, invaluable suggestions, and for the best literary works on blindness, in particular Professors Steven Axelrod for his help with every aspect of the book and bright ideas, and John Ganim, for his constructive ideas and positive attitude. Gracious thanks, too, to Dr. Diana Glyer of Azusa Pacifi c University for setting an inspir- ing example. Warmest thanks go to Diane Williams, Diane Webb, Karen x Acknowledgments Herrell, Alice Zimmerman Goetschel, Matthew Rogovein, and Frannie Seamans Collie for their friendship and understanding. To Roxy Han and Dr. Michael Pangelinan, wellsprings of goodness, we offer our gratitude as well. We thank the Braille Institute’s Los Angeles Center for their kind and gracious help. We thank the librarians at the Young Research Library at the Univer- sity of California, Los Angeles, and those at the Rivera Library at the Uni- versity of California, Riverside. We thank our excellent editor Debbie Carvalko at Praeger for her guid- ance and her kindness and patience with us, and to Jennifer Boelter, our fi ne project manager. Above all, we want to thank Ann Morris Bliss, our wonderful friend, who is the inspiration for this book and an inspiration to us all! Her as- sistance in research and with every part of the book has better enabled us to write of people’s direct experiences and to empathize more fully with the experience of blindness. Without Ann this book never would have been written. Last we thank the many members of the blind community with whom we have spoken and been in contact: You have helped us immeasurably by sharing your lives and writings with us. We hope this book will give you courage, confi dence, inspiration, and strength and that it will answer some of your questions. Cheri Colby Langdell, PhD, and Tim Langdell, PhD www.copingwithvisionloss.com September, 2010 Pasadena, California 1 Introduction The blind man carries a star on his shoulder Antonio Porchia, Voices This book was written for and is dedicated to the visually impaired and blind, and their friends, family, and colleagues who may wish to gain a deeper insight into their condition. In this book we fi rst present one blind person’s view of what it is like to be blind, and then we review how blind- ness has been depicted in world literature. We go on to present a selection of fi ction written by or about the blind and then a selection of nonfi c- tion by blind writers. Finally, we present an overview of blindness in the world’s religions as well as a brief guide for meditation for blind and vi- sually impaired people, and a chapter on the current state of research on cures for blindness. SOME BASIC FACTS ABOUT BLINDNESS The technical defi nition of blindness is having visual acuity of 20/200 or worse in the better eye when corrected with lenses. Twenty-one percent of Americans age 65 and over, or 7.3 million people, have some form of vision impairment. According to Research to Prevent Blindness, there are more than 15 million people in the United States with visual impair- ment, of which 1.3 million people are legally blind. Blindness and visual 2 Coping with Vision Loss impairment particularly affect those age 65 or older, and a leading cause in this age group is retinal degeneration. Worldwide, the World Health Organization reports about 314 million people have visual impairments and around 45 million are legally blind. About 87 percent of the world’s visually impaired live in developing coun- tries, and cataracts remain the leading cause of blindness globally. Around 82 percent of all visually impaired people are age 50 or older, representing around 19 percent of the world’s population. THE FIRSTHAND EXPERIENCE OF BLINDNESS: HAVING THE WHOLE CAKE BUT SMALLER Possibly no one re-creates the experience of being blind better than the Australian writer, professor, and scholar John M. Hull, who in On Sight and Insight: A Journey into the World of Blindness writes movingly about becoming blind, after having suffered from cataracts, as well as a congenital skin condition and asthma. He wasn’t fully blind for his fi rst 50 years (Hull 1). His comprehensive philosophical study of the con- dition and the implications of blindness has a “Foreword” to the blind reader and is an excellent book to read if one is becoming blind. I summa- rize the most important points here to give a taste of the tone and tenor of his discussions. Hull’s comments in the foreword to this philosophical, phenomeno- logical study are as interesting as they are revealing about what it’s like to lose one’s sight. He begins by explaining that in 1983, he began keep- ing a diary both to establish some balance in and control over his life and to record his experiences, dreams, and psychological and emotional re- sponses to his growing blindness. Hull says he started the journal because he wanted to make sense of his life as a blind person and resist any urge he might have initially had to isolate or marginalize himself. He writes it for those with sight and those without so that everyone might understand more clearly and fully how it feels to be blind. He was interested in his own responses to blindness and wanted to observe the changes he expe- rienced in himself throughout the process, to make his life and perspec- tive more comprehensible and thus accessible to his friends and family. In short, he wanted to explain everything novel and different about his new life as a blind man (xi). This noble purpose—to share the experience of and insights into his own adjustment to the condition of blindness so as to alleviate any dis- tress, confusion, or frustrations others might feel because of ignorance about what a blind person goes through—dovetails precisely with the Introduction 3 purpose of this book, which is to educate readers about what to expect when facing blindness. Both we and Hull hope to give our readers insight into blindness in order to make the adjustment as smooth and comfort- able as it possibly can be.