The Review of Disability Studies: An International Journal Volume 1, No. 1, 2004 ISSN (in progress) www.rds.hawaii.edu Copyright 2004, All Rights Reserved by the Center on Disability Studies University of Hawaii at Manoa, Honolulu, Hawaii, U.S.A. "An International Arena for Disability Studies" - The Review of Disability Studies, founded in 2003 by the late Dr. David Pfeiffer, is an internationally-focused academic journal in the field of Disability Studies. The journal contains research articles, essays, bibliographies, and reviews of materials relating to the culture of disability and people with disabilities. It also publishes forums on disability topics brought together by forum editors of international stature. Poetry, short stories, creative essays, photographs, and art works related to disability are also published. For information about how to submit a manuscript, please see the back cover of the journal or go to the web at www.rds.hawaii.edu. The journal is published four times a year, in both print and electronic format, and runs approximately one hundred pages an issue. A subscription is necessary to access both the print and online versions of the journal. Subscriptions cost $50.00 (U.S.) for individuals, $100.00 (U.S.) for institutions and libraries, and $25.00 (U.S.) for students. There is a $15.00 (U.S.) extra charge for shipping outside of the U.S. and Canada (airmail). To subscribe to the journal, download or submit a subscription form at www.rds.hawaii.edu, or fill out the form included in print copies of the journal and send with payment to: The Review of Disability Studies, Center on Disability Studies, University of Hawaii at Manoa, 1776 University Avenue, UA 4-6, Honolulu, HI 96822, U.S.A. Tel: 808-956-5688 Fax: 808-956-7878. Permission to copy portions of this journal for non-commercial purposes will be handled in accordance with the fair use principle. To obtain reprint permission, please contact Associate Editor, Dr. Megan Conway, at the address above, or email her at submissions_rds@hawaii.edu. Editors - Founding Editor, David Pfeiffer, Ph.D. (1934-2003); Editor, Robert A. Stodden, Ph.D., Center on Disability Studies, University of Hawaii at Manoa, stodden@hawaii.edu; Associate Editor and Reviews Editor, Steven E. Brown, Ph.D., Center on Disability Studies, University of Hawaii at Manoa, sbrown8912@aol.com; Associate Editor and Submissions Editor, Megan A. Conway, Ph.D., Center on Disability Studies, University of Hawaii at Manoa, mconway@hawaii.edu The editors do not necessarily agree with the viewpoints expressed in each article, however, we support the expression of diverse opinions and conclusions. If readers feel strongly about any articles it is suggested that they compose a reasonable, articulate, well-researched response, which will be considered for publication. The Editors would like to thank the following individuals for their support of the Review of Disability Studies (RDS): RDS Distinguished Fellows - Barbara Altman, U.S.A.; Rolf Bergfors, Sweden; Frank Bowe, U.S.A.; Tanis Doe, Canada; Lex Frieden, U.S.A.; Gisella Hermes, Germany; Judith Heumann, U.S.A.; Kalle Konkkola, Finland; Kathy Martinez, U.S.A.; Mark Medoff, U.S.A.; Osamu Nagase, Japan; Susan O'Hara, U.S.A.; Trevor Parmenter, Australia; Joakim Peter, Chuuk, Federated States of Micronesia; Adolf Ratzka, Sweden; Katherine Seelman, U.S.A., Susan Sygall, U.S.A., and Anthony Thanasayan, Malaysia. RDS Manuscript Review Board - Linda Toms-Barker; Cheryl Bartlett; Rhonda Black; Leslie Chenoweth; Peter Dowrick; Lillian Gonzales Brown; Marilyn Hammond; Norma Jean Hemphill Stodden; Jean Johnson; Richard Keller; Susan Koppelman; David Leake; Gary Linn; Alex Lubet; Sally Nhomi; Beth Omansky Gordon; Deborah Phillips; Trevor Parmenter; Fred Pelka; Jim Skouge; Mark Sherry; Garnett Smith; Margaret Vickers, and Jo Ann Yuen. TABLE OF CONTENTS Review of Disability Studies, Volume 1, Issue 1, 2004 Preface Tribute to Dr. David Pfeiffer, 1934-2003 A New Journal Is Born David Pfeiffer, University of Hawaii at Manoa Upcoming Forums: Announcements and Call for Papers Spring, 2004, Research on Postsecondary Education and Individuals with Disabilities Summer, 2004, On the Cutting Edge - Conference Papers Fall, 2004, Infusing Disability Culture into Education Forum: Disability Culture - A Decade of Change Forum Editor Introduction: Disability Culture - A Decade of Change Steven E. Brown, University of Hawaii at Manoa An Essay on the Beginnings of Disability Culture and Its Study David Pfeiffer, University of Hawaii at Manoa Disability, Identity, and Cultural Diversity Stephen French Gilson and Elizabeth DePoy, University of Maine On Deaf Ears: Disabled in Hollywood Mark Medoff, Florida State University "I'll pick you up by your back brace and throw you like a suitcase": On Naming Discrimination Against Disability Jillian Weise, University of North Carolina at Greensboro The Difficulty with Deafness Discourse and Disability Culture Tanis Doe, University of Victoria, Canada From the Cripple-Power-Festival to Independence Days: Disability Culture in Germany Ottmar Miles-Paul, Kassel, Germany Personal Reflections on Disability Culture Steven E. Brown, University of Hawaii at Manoa Research Articles Exploring Disability Hate Crimes Mark Sherry, Chicago Institute for Disability Research Attitudes Toward Persons With Disabilities Among Japanese Social Work Students Reiko Hayashi and Mariko Kimura, Department of Social Work, Japan Women's University, Japan On Behalf of the I.W.W.: Helen Keller's Involvement in the Labor Movement Mary M. Fleming and William H. Ross, University of Wisconsin--La Cross Disability in Chronic Fatigue Syndrome and Idiopathic Chronic Fatigue Adam W. Carrico, Leonard A. Jason, Susan R. Torres-Harding, and Elizabeth A. Witter, DePaul University Framing Nancy Mairs: A Documentary Project Janice L. Dewey, University of Arizona The Role of Occupational Therapy in Rural Healthcare: A Case Study on Farmers with Disabilities Jennifer Coles and Megan O'Hare, Creighton University Infusing Disability Studies into "Mainstream" Educational Thought: One Person's Story David J. Connor, Columbia University Slipping the Surly Bonds of the Medical/Rehabilitation Model In Expert Witness Testimony Patricia A. Murphy, University of Toledo Researching the Social Construction of Blindness Beth Omansky Gordon, The University of Queensland, Australia Tunes of Impairment: An Ethnomusicology of Disability Alex Lubet, University of Minnesota Essays and Creative Works Will the Next Generation Please Step Forward? A Legacy for the Next Generation of Troublemakers Megan A. Conway, University of Hawaii at Manoa Bibliographies and Resources Still Celebrating Disability Culture: A Peek at the Annotated, Disability Culture Bibliography Steven E. Brown, University of Hawaii at Manoa Academic Programs in Disability Studies Steven J. Taylor and Rachael Zubal-Ruggieri, Syracuse University Book, Art and Film Reviews Book Review: Movie Stars and Sensuous Scars by Steven E. Brown Tanis Doe, University of Victoria, Canada Book Review: Disability and Culture: Universalism and Diversity edited by T. Bedirhan Ustun et al. Jean Johnson, University of Hawaii at Manoa Monograph Review: Celebrating Disability Arts published by Arts Council England Steven E. Brown, University of Hawaii at Manoa Music Review: Angryfish, Eight Men Called No, and Barbed Wire and Pot-Holes Steven E. Brown, University of Hawaii at Manoa Correspondence Letters to the Editor, Commentary Announcements Annual Pacific Rim Conference on Disabilities, Honolulu, March 29-30, 2004 RDS Information Information for Advertisers Subscription Form Information for Submissions (back cover) PREFACE Tribute to David Pfeiffer 1934 - 2003 PHOTO OF DAVID PFEIFFER Professor David Pfeiffer passed away unexpectedly on December 17, 2003. An internationally recognized scholar in the field of disability studies, Pfeiffer, who used a wheelchair as a result of childhood polio, received a Ph.D. in Political Science from the University of Rochester in 1975. Pfeiffer retired in 1997 from Suffolk University in Boston, where he served as Chair of the Department of Public Management. He also initiated Suffolk's Disability Studies concentration in the MPA program. In Hawai`i, Pfeiffer became Resident Scholar at the Center on Disability Studies, Visiting Scholar in the Department of Political Science, and affiliated with the School of Medicine. Pfeiffer published over 200 articles about disability studies, primarily in refereed journals. He also was a well-known advocate who spent the years from 1977 to 1980 as the Massachusetts State Director for the White House Conference on Handicapped Individuals. He was instrumental in the creation of the Massachusetts Office on Disability, organizing the Massachusetts Coalition of Citizens with Disabilities, and amending the state constitution to prohibit discrimination based on disability. Among his numerous other accomplishments, awards, and activities, he was a Past-President of the Society for Disability Studies and editor of Disability Studies Quarterly. In recognition of his combined excellence in the areas of research, teaching, and advocacy in disabilities, the American Public Health Association DisAbility Special Interest Group awarded Pfeiffer the Alan Meyers Award during its annual meeting in San Francisco in November 2003. He also served as a mentor to many disability studies scholars and writers, as demonstrated in the many tributes that arrived after he passed on. At the time of Pfeiffer's death, he was completing a book about disability theories and leading the effort to develop the Review of Disability Studies (RDS). In recognition of his many contributions RDS will perpetually recognize him as Founding Editor. He is survived by his wife, Barbara, of Hawaii, son Clifford, of Massachusetts and daughters Katherine Pfeiffer and Carol Messmore, her husband Peter, and their son, Peter, all residing in Florida. Consistent with Dr. Pfeiffer's wishes and with the support of his family, anyone wishing to acknowledge his life-long accomplishments, may make a contribution to the Dr. David Pfeiffer Memorial Fund being established with the University of Hawai'i Foundation, Account #120-3263-4 (UAP) at the following address: University of Hawai'i Foundation, PO Box 11270, Honolulu, HI 96822-0270. A Selection of Tributes to David Pfeiffer "I and fellow Australians who knew David were saddened to learn of his recent passing. He was a giant among us in terms of his wisdom, energy, advocacy and plain common sense. Like many great people before him, his legacy will live on in our hearts and minds." Trevor Parmenter "I first met David in 1982 when he and Irv Zola participated in an Office of Technology conference on mental health adaptation to physical disability. That year, I sat at the feet of these two plus Hugh Gallagher as they opened my eyes and heart with their powerful stories to the world of physical disability that I, as a mental health clinician, had never known...Ten years ago, when David was Chair of the Public Management Department oat Suffolk...he was a leader in research, teaching and advocacy and developed a devoted group of students and associates...All of the above, though, misses the real David...He was such a warm, kind person. He was a lover of fine aged port and stimulating conversation. He was a mentor, a father to many, and a role model for us all. We missed him when he decided to go surfing in Hawaii. I miss him now that he is gone." Richard Beinecke "[David] was a person who made a difference...I am thankful that the DisAbility Special Interest Group of APHA honored him with the Alan Meyers Memorial Award in November of this year for his scholarship, advocacy and teaching." Gloria Krahn "I came to know David first and foremost through the eyes of his daughter, Carol, some 25 years ago when we lived in the same freshman dorm at George Washington University and became fast friends. I will never forget the love and pride she had for him or how she stared people down when he fell coming into the dorm rather than have them gush all over him. Somehow this thing they call disability pride never seemed as palpable as it did after seeing him through her eyes." Bob Williams We at NIDRR were very sad to hear of the death of Dr. David Pfeiffer. Please accept our deepest sympathies. As a fellow Bostonian, I remember David from his days at Suffolk in Boson. He was a tireless worker to maximize the full inclusion, social integration, employment and independent living of individuals with disabilities of all ages." Richard Melia "...I could tell [David] was a man of integrity. I would watch him at SDS conferences, intrigued by his big and strong presence and his confidence. I thought: here is a man who likes who he is..." Laureen Summers "...Often I feel as if I am a voice in the wilderness. [David's] support meant a great deal to me..." Jim Overboe "...[David] was kind and supportive. He encouraged me to join the field. He sent me articles on 5.25 floppy inch disks. We laughed at the time that perhaps we were the last ones using these disks and WordPerfect 5.0...I will miss him and his leadership. I regret that there will be no more lunch discussions with him. I mourn his passing and I salute him as a brother. Hail and farewell." Jim Ferris "A smile and a hug and a raised fist for David, to all his friends, and to his wife Barbara. I'm sitting here in sad shock, full of memories of David and glad to have a place where they might land. We met in 1977 when he chaired the Massachusetts component of the White House Conference on handicap...He was the first chair of the Adaptive Environments board of directors in 1978. Many stories to tell from those early days...." Elaine Ostroff "...David was a wonderful mentor to me in graduate school in Boston back in the 1990's, and for a couple of years I was privileged to assist him in teaching his Disability Studies courses at Suffolk University. I will never forget when David asked me in our first conversations if I would stutter, as I usually do, when I addressed his class at Suffolk. Braced to weather another job lost (ADA or no ADA), I answered in the affirmative. I was surprised and gladdened when David replied that it would be good for the students to hear me stutter. It would be important for them to realize that an individual with a speech impairment can communicate and explore complex thoughts and feelings in the classroom. I do quite a bit of teaching now, and occasionally I still look for support to the strength of David's firm conviction that people who stutter can successfully teach. Thank you David, for your splendid contribution to my life and to the lives of so many and for your great dedication to the field of Disability Studies. I hope that have been able to return your [dedication]." Miriam Hertz "Sorry we did not get your message until Sunday [that the celebration of David's life had been postponed]. However, the gift given to us was spectacular! Thank you, David. The weather was gorgeous. My daughter was delighted to play along the beach. We made birds from palm leaves as we chatted with a group of tourists from England. It has been years since I had watched a sunset. It did my soul wonders. I will always remember David this way." Richard Radtke "David worked behind the scenes many times and I think many of us on the 'in' crowd don't appreciate his many accomplishments...I knew David because of his work here in Boston, where he spent most of his life. David, from Suffolk University, and Irv Zola , from Brandeis University, were two of the great disability philosophers here...In 1979 RSA $2,000 in end-of-year money...During those days consumer involvement was a radical concept...David was one of a dozen cross-disability leaders who planned a conference, funded by the $2,000, that founded the Massachusetts Coalition of Citizens with Disabilities. Dave continued to advice the organization for many years, in addition to his work with the Boston Self-Help Center (one of the first and best self-help organizations for people with disabilities)...He worked hard to create effective advocates to interface with government at all levels... "David is best known for his work as the Chairperson of the Suffolk University Master's in Public Administration Program. He saw the valuable role that educated people can make on the inside, as well as the outside of government. He taught skills to people, with and without disabilities, that would make them better bureaucrats...I'm afraid that we've lost another vital philosopher and touchstone...The World War II generation is touted as 'America's greatest generation.' I think that to people with disabilities, the post-polio survivors of the 1940's and 1950's will be known as our greatest generation." John Nelson A New Journal Is Born David Pfeiffer, Ph.D. Center on Disability Studies University of Hawaii at Manoa The need for a new journal for the field of disability studies has been declared for some time and from various perspectives. Without naming them there are only four journals which characterize themselves as being in the field of disability studies. There is one journal published in the United Kingdom which was very international, but over the last several years it has almost exclusively published articles written from the viewpoint of the social model, used qualitative methodology, and had a sociological orientation. There is a second journal published in the United Kingdom which was very international, but it was written from the viewpoint of medical rehabilitation, used narrow quantitative methodology, and had a medical orientation. It often publishes articles which downplay the role of people with disabilities. There is nothing wrong with these orientations (except for discounting the views of people with disabilities), but they are not the only ones. Crossing the Atlantic there is a third journal published in the United States which was not very international, was written from the viewpoints of vocational rehabilitation and special education, and used various methodologies and orientations. It was short on articles using the disability paradigm. There is a fourth journal published in the United States which was moderately international and was open to various viewpoints and methodologies. It strongly endorsed the disability paradigm, welcomed younger scholars and non-academics, and attempted to be a forum for essays and poetry as well as research articles. It is presently undergoing a reorganization and it is too early to tell what its future may bring. Members of the governing board of the association which owns it often were dismayed at what they saw as a social science orientation of its articles. They called for articles to be published which showed a post-modern, humanist orientation. There is nothing wrong with these orientations, but again they are not the only ones. There are some journals which focus only on one disability or experience. They are narrow and usually are concerned with "best practices" and similar things. There also were a number of special symposiums concerned with disability studies published in journals which are identified with the traditional academic disciplines. Although these symposiums and forums were worthwhile, they were only occasional outbursts of disability studies scholarship and writing. In other words, the outlets for disability studies scholars is limited outside of the four journals just described. Disability studies is a growing field. There are a number of approaches and orientations in the field. The existing journals do not provide enough opportunity for the established and the emergent scholars in the field. In addition they all fail in their intent to be international. In part it is because of the language of publication and in part it is because of problems of outreach. There is a need for a journal which attempts to be very international, welcomes all orientations, publishes anonymously refereed research, and is an outlet for writers who do not wish to take the time nor do they need anonymous refereeds endorsements. The Center on Disability Studies, University of Hawaii at Manoa, is attempting to meet these needs by starting the publication of a new journal, The Review of Disability Studies: An International Journal. The new journal will contain peer reviewed research articles, essays, and bibliographies relating to the culture of disability and the experience of people with disabilities. It will also publish forums on disability topics brought together by forum editors of international stature. Poetry, short stories, creative essays, photographs, and artwork related to disability are also invited. Reviews of books, films, videos, art, music, and photographs relating to disability will be included. These items will be reviewed to ensure a high standard of professional quality by an in-house and external editorial staff with the highest qualifications and reputation. If appropriate and specifically requested, a manuscript will be anonymously reviewed by two outside peer reviewers and this fact will be noted when it is published. There are many scholars who are in a tenure track position or who are applying for promotion who must have anonymously peer-reviewed publications. While we neither condone nor agree with the power struggles which this requirement represents and we do not concede that anonymous peer reviews guarantee quality, we do understand that many academics and non-academics as well exist in such a milieu. In any event, The Review will represent quality in all of its published writings. The Review will be published on the Web and will be produced in a print version. The first two issues will be freely available on the Web, but a subscription is necessary to obtain printed copies. The charter subscription price is $50 US for individuals, $25 for students, and $100 US for libraries and institutions with a $15 US fee for postage outside of the US and Canada because it will be sent via air mail in order for it to arrive within a reasonable time. Student-subscription rates are available. The Review is open to all perspectives, approaches, views, and paradigms relevant to the study and experience of disability. There will be no one view represented with one caveat. Any submission based on the functional, deficit view of disability will be questioned. The editors can conceive of an article written from this viewpoint which can make a contribution, but since the deficit view of disability causes prejudicial behavior and pejorative attitudes toward people with disabilities it will be carefully evaluated. Generally, such a perspective is not considered to be within the purvey of disability studies. In fact, it is considered to be the antithesis of the study of disability and people with disabilities. In addition, any inspirational story or writing will be considered outside of the field of disability studies because the deficit view is implicit in it. There are a few journals which are read by persons working in the field of developmental disabilities, in the field of disability studies, and in the field of gerontology. They each appear to have their own sphere of research and publication with many persons in gerontology even refusing to consider disability to be a legitimate concern beyond being a deficit which has to be dealt with. The Review will attempt to bridge this gap. The editors of The Review consider this gap to be an artificial and a non-productive one. In addition there are few journals which are truly international in authorship, readership, and concerns. The Review will attempt to remedy this unfortunate situation. There are few journals which publish material from authors who describe themselves as humanists with a post-modern perspective using a qualitative methodology and at the same time from authors who describe themselves as social scientists using a quantitative methodology. There are a number of scholars who bridge both these descriptions and they have a hard time finding an outlet. The Review welcomes both perspectives as well as humanists who use quantitative methods and social scientists who use qualitative methods. It is not the methodology used, but whether the appropriate methodology was used to draw conclusions. The extensive experience, training, and publication record of the editors will guarantee that we will live up to these expectations. Our independence shields us from undue influence from any one perspective. Our integrity and professional dedication motivates us to accomplish our goal. We will be guided and counseled by our evaluators and referees and other staff. We extend a welcome to all of our readers and ask you to join us in achieving the goals of The Review. Feel free to contact us at and to send manuscripts and other material to . The guidelines for contributions as well as a submission form and a subscription form can be downloaded from . UPCOMING FORUMS Editors Note: To inquire about submitting to the forums below, please contact the Guest Editors for each Forum individually. If you are interested in being a Guest Editor and have ideas for a Forum Topic, please contact the RDS Editors at submissions_rds@cds.hawaii.edu or Tel. 808-956-6166. General guidelines for Forum Editors are on the back cover of the Journal. Spring, 2004: "Research on Postsecondary Education and Individuals with Disabilities" Editor: Robert Stodden, stodden@hawaii.edu, Tel. 808-956-9199 Summer, 2004: "On the Cutting Edge - Conference Papers" Editor: Steve Brown, SBrown8912@aol.com, Tel. 808-956-6166 Fall, 2004: "Infusing Disability Culture into Education" Editor: Megan Conway, mconway@hawaii.edu, Tel. 808-956-6166 FORUM: DISABILITY CULTURE - A DECADE OF CHANGE Disability Culture: A Decade of Change Steven E. Brown, Ph.D. Center on Disability Studies University of Hawaii at Manoa Abstract: A reflection on the life of David Pfeiffer, why the Center on Disability Studies decided to begin this journal, and what we hope to achieve with it, leading into a forum about disability culture. Keywords: David Pfeiffer, disability culture, Review of Disability Studies This is a bittersweet forum for me. When a group of us at the Center on Disability Studies at the University of Hawaii at Manoa sat down together to plan this journal and this issue, David Pfeiffer led us. We planned to follow David's leadership for a long time. Alas, that was not to be. David passed away suddenly in December 2003. We lost our leader. Each of us feels David's loss in different ways. I'm still discovering ways I miss him. In the first days after his passing, I missed my friend. Someone who lived only a few miles from us and was easy to see whenever we could arrange it. I also missed my colleague. Someone who attended meetings sporadically in the past couple of years, and who credited our being here with permitting him to do that. And, we in turn, thanked David for bringing us to Hawaii. He invited us to present at a symposium in early 2002. We loved Hawaii and the people we met, and with encouragement, we moved here a few months later. When David did attend meetings, he was zealous about it, bringing with him not only his passion, but a full agenda. I always wondered how our one or two hour meetings could be completed when I read what David had in mind for us to do-and knowing how talkative (and argumentative) we all could be. To my amazement, we somehow did it. I'm not of David's generation. He was about twenty years older than I. He is the first person I heard talk about Franklin D. Roosevelt being a role model for him as a child who survived polio. David, in turn, became a role model for many others. This became crystal clear in the days after his passing, when dozens of people shared memories and discussed how much they would miss him. I recalled the first disability rights meeting I attended in the early 1980s when someone turned to me and talked about the need for "new blood" in the state's disability rights movement. I looked at him in astonishment and wondered what was I? I'm no longer "new blood" or anything close to that. With David's passing it dawned on me that I have a responsibility to carry on his legacy of mentoring. I'd like to think I've done my share of guiding over the years, but as I age my thinking about mentoring has changed-and David has a lot to do with that. While I prepared myself to write this introduction I realized something about my relationship with David. He was always enthusiastic about everything I ever wrote. I know from long conversations with him that he didn't always agree with me. Indeed, it's probably fair to say that we had some basic philosophical differences about life itself. But we also shared a fundamental agreement about life as a person with a disability. We both knew that disability was a socially constructed identity. We also both knew that disability was not only external-we shared some internal physical manifestations of our different disabilities. We also both believed with a passion in the existence and efficacy of disability culture. David, at least in his final couple of years, liked to think of himself as curmudgeonly. He called himself "mean" and a few other things that were less than flattering. But the David I knew was one of the nicest, gentlest, and yet most passionate people I have ever met. He was also one of the most honest. If you said something he disagreed with, he let you know. He didn't hesitate to speak up at meetings to confront someone. But he was also quite conscious of whom he challenged. If it was an older and respected scholar, he'd take you on vehemently. If you were a young student or emerging scholar, he'd try to be gentle, get his point across, and encourage you to continue your work. It's a little less than a week, as I write, that David passed on. I've grieved each day. I thought about him most days as I went to sleep and as I woke. I turned on my computer and read email messages about David every day for a week. I'm fighting back tears as I write, not because I don't want to cry, but because I want to see the computer screen. And yet... I don't wish only to mourn for the work my colleague had not completed. I don't want only to grieve for the friend I will no longer see. I desire also to celebrate. I want to celebrate a life that made a difference to a lot of people all around the globe. I want to celebrate a life full of love and friendships. I want to celebrate a life lived with zest. I want to celebrate my friend. Which leads me back to the subject of this forum. David was one of the first people to write about disability culture. When in the mid- to late-1980s this idea of disability culture began to jell with me, I started reading whatever I could that might relate to it. I found two articles from the 1984 Conference of the Association on Handicapped Student Service Programs in Post-Secondary Education (AHSSPPE, now the Association on Higher Education and Disability, or AHEAD). The presenters were David Pfeiffer, then at Suffolk University and Andrea Schein, then of the University of Massachusetts-Boston. Each asked, "Is There a Culture of Disability?" Their affirmative responses were published in the Association's Proceedings. Years later I also read an article by Vic Finkelstein, of England after having fled South Africa, published about the same time as the AHSSPPE articles. Like David and Schein, Finkelstein argued for the existence of disability culture. In the late 1980s, when I first approached my friends and colleagues about the concept of disability culture, I had yet to read any of these articles. I still don't know exactly where I formulated my initial ideas about disability culture, but as best I could reconstruct them while I wrote Investigating a Culture of Disability, I combined my background as a historian interested in reform movements with my reading of grassroots magazines like the Disability Rag (now the Ragged Edge). And as the three articles by Pfeiffer, Schein, and Finkelstein demonstrate the idea was in the air. I tentatively approached a couple of meetings in the late 1980s and early 1990s to explore my ideas about disability culture. I received mixed, but always passionate, reactions. I knew I had touched some kind of core about what people believed and I plowed on. During the 1990s I talked, wrote, and promoted disability culture in any way I could. I wanted to be clear about my own biases and always tried to be honest about them. In my 1997 review of the literature, "'Oh, don't you envy us our privileged lives?' a review of the disability culture movement," I wrote: 1) When discussing disability culture I focus on cross-disability culture, meaning a movement that crosses all disabilities and all cultural groups. I do not do this because I believe the meaning of disability culture is the same for everyone, but because I (and the discussion) have to start somewhere; 2) I write about disability culture primarily in the United States, because, once again, one has to start somewhere. There is a thriving, energetic, intellectual discussion of disability culture in England. One of these days I hope to experience it firsthand and write about it. The concept of disability culture has also excited people of every nationality that has encountered and discussed it; 3) I examine primarily a British-influenced middle class history and culture. The reason for this is endemic to American history. This background has permeated our national history, politics, culture, and most importantly, the people who have recorded it. It is in part a reaction to this characteristic of our academic settings that disciplines such as social and cultural history, ethnic studies, and women's studies developed. It is also one of the primary motivations for the development of disability studies. Discussions of disability culture from a non-British-based, non-middle class perspective are as needed as they are for other topics; 4) I have always been a fan of both high-and lowbrow culture. I am also an advocate of blending academic research and knowledge with non-academic research and knowledge and endeavor to write from that slant; 5) I am a white, middle class male and am writing from that perspective. When we planned this journal, and this forum, we endeavored to address some of these biases. Perhaps the most important tendency we tried to avoid was being Anglocentric. We were not as successful as we would have liked. The primary reason for that was the deadline created for this issue. We worked with people from Japan, Korea, Spain, Malaysia, and the Micronesian island of Chuuk. None were able to contribute in the timeline discussed. We hope to hear from each of these countries in the future. We also welcome reader input and suggestions for writers, especially those with an international background. We did have some success in broadening this forum. We include contributors from Canada and Germany. While most articles remain cross-disability ones, there is some emphasis on specific cultures, especially Deaf culture. The articles in this forum reflect thriving disability cultures. We are lucky to have David Pfeiffer's final words about disability culture guiding us as we move into the future. RDS is also privileged to include Tony-award winning playwright, Mark Medoff, in our inaugural issue. His reflections about Hollywood and deafness will ring true to many of us who have not experienced the dizzying heights of fame he's achieved. Perhaps the youngest of the contributors is Jillian Weise, a multi-talented artist, who's appeared in the pages of the Atlantic, as well as now gracing us with her observations about disability culture. Ottmar Miles-Paul is recognized as one of the premier leaders of the German disability rights movement. We are fortunate he took time off from his busy advocacy and journalism schedule to introduce us to a German disability culture festival. Academic scholars, Stephen Gilson and Elizabeth Depoy, explored the concept of disability culture from the vantage of people with disabilities who do not necessarily identify with a disability rights movement. Their conclusions will challenge us all. Tanis Doe, like David Pfeiffer, is a thinker who possesses the rare ability to critique where she finds herself academically, movement wise, and culture wise. She has taken on the daunting task of trying to link Deaf and Disability cultures. Last, I've tried to tie together some of my experiences as a proponent, writer and talker about disability culture for the past decade or so. We hope that this forum will engage you, challenge you, and motivate you. Just like our friend and colleague, David Pfeiffer, always did. References Brown, Steven E., Investigating a Culture Of Disability: Final Report (Las Cruces, NM: Institute on Disability Culture, 1994). Brown, Steven E., "'Oh, don't you envy us our privileged lives?' a review of the disability culture movement," Disability And Rehabilitation: An International, Multidisciplinary Journal, 19 (8) (August 1997), 339-49, revised in Brown, Steven E., Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (New York: People with Disabilities Press, 2003). Finkelstein, Vic, "Disabled People and our Culture Development." DAIL (Disability Art in London) Magazine Anthology: The First Five Years (London: DAIL Magazine, 1992), 3-6. Pfeiffer, David, "Is There a Culture of Disability?" 1984 and Beyond, Proceedings of 1984 AHSSPPE Conference, 1984. Ragged Edge: The Disability Experience in America: http://www.ragged-edge-mag.com/. Schein, Andrea, "Is There A Culture of Disability?" 1984 and Beyond, Proceedings of 1984 AHSSPPE Conference, 1984. STEVEN E. BROWN, co-founder, Institute on Disability Culture, and Resident Scholar at the Center on Disability Studies at the University of Hawaii at Manoa earned a doctorate in history in 1981 at the University of Oklahoma. Brown's most recent publication, Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride (People with Disabilities Press, 2003), joins dozens of articles and five previous monographs about disability, including Independent Living: Theory and Practice and Freedom of Movement: Independent Living History and Philosophy. Also an award-winning poet, Brown has published six books of poetry, including Dragonflies In Paradise: An Activist's Partial Poetic Autobiography; and Pain, Plain--And Fancy Rappings: Poetry from the Disability Culture. An Essay on the Beginnings of Disability Culture and Its Study David Pfeiffer, Ph.D. Center on Disability Studies University of Hawaii at Manoa Abstract: The formal study of disability culture began around 1985. Steven Brown, the editor of this Forum, was the pioneer. Of the many indicators of the existence of a culture the first article in the field emphasized artifacts and language. Out of sometimes heated discussions of disability culture emerged disability pride. The concept of disability culture is a vital and important one today for the disability movement. Keywords: disability culture, disability pride, disability movement Since before people with disabilities were recognized as something different there existed disability culture. There are many ways in which it could have started. Before speech was recognized and used for communication people used gesture and body language to communicate. People with hearing problems probably originated the first sign language even though today many persons who are deaf consider themselves to be part of the Deaf Community, that is, a linguistic minority who are not disabled. People with mobility problems developed means to get around. People with other disabilities developed what we would call assisted technology today, although it was not highly sophisticated at all. The self-conscious study of disability culture, according to Steven E. Brown, the editor of this Forum on disability culture, began with an article published by the author of this essay, Pfeiffer (1985). It was a paper delivered at the 1984 conference of the Association on Handicapped Student Service Programs in Post Secondary Education, now known as the Association on Higher Education and Disability (AHEAD). Andrea Schein (1985) and I delivered identically titled papers raising the question of whether a culture of disability existed. The answer was affirmative. In researching and writing that paper I discovered that there were many different definitions of the term culture, especially in the discipline of anthropology. The definitions ranged from identifiable music and literature to the existence of artifacts to behaviors which were supportive and related to the behaviors of others. There is no single definition of disability culture, but rather there are definitions. These definitions, while being distinct, have overlapping concepts. In my original paper I emphasized artifacts and language. The artifacts consisted of things such as wheelchairs, crutches, brailed documents, hearing aids, stair lifts, and other things. Language consisted of sign language (although today I would respect the position of the Deaf Community that those of us not conversant with sign language are the ones with a disability), large sized print, signs like those indicating an accessible bathroom, slang and insider terms like survivor, and some professional jargon. There are publications, such as magazines, which are directed toward the disability community. There is music and there is poetry written by people with disabilities and for people with disabilities. There are performing arts groups composed entirely or almost entirely of people with disabilities. There are pieces of written literature which are part of disability culture. While many persons in the Deaf Community would not agree that they belong here, there is sign language literature available on video. There are terms like crip, blinkie, and deafie which only persons with certain disabilities can use with legitimacy. There is also disability humor, but do not ask for examples right now. The most influential work which not only discussed and analyzed disability culture, but also is a representation of it along with many pieces of literature it contains, is Steven E. Brown's final report as a Mary E. Switzer Distinguished Fellow of the National Institute on Disability and Rehabilitation Research for the academic year 1993-1994. (Brown, 1994) It is titled Investigating a Culture of Disability and is the place to start in order to understand disability culture. Brown and his wife Lillian Gonzales Brown are the founders of the Institute on Disability Culture which was located in Las Cruces, New Mexico. They are both now associated (in various capacities) with the Center on Disability Studies, University of Hawaii at Manoa. In his work Investigating a Culture of Disability, Brown presents a history of people with disabilities and their developing culture. He pays attention to the social situation of people with disabilities and other people's reactions. These reactions included oppression, institutionalism, paternalism, and asylums which gave way to ideas of rehabilitation, independence, rights, and the personal experiences of people with disabilities. He documents the fierce struggle within and outside of the Society for Disability Studies over the question of where or whether a culture of disability existed. Out of this milieu emerged disability pride and survival scenarios. He surveys disability culture as it existed in the 1990s. Out of the sometimes heated discussion over disability culture there emerged three primary understandings of it. First, there are many people who equate disability culture with the arts which are by, for, and about disability. There is also, second, the contention by Jessica Scheer and others that no separate disability culture can exist because disability is vastly different from linguistic and ethnic identities. Instead, they argue, there is a shared consciousness by most people with disabilities which is a strong bond between them. And third there is the equating of disability culture with participation in the disability community. These three understandings dominate the discussion of disability culture at the start of the twenty first century. No matter how it is approached and defined, disability culture is an extremely important concept for the disability community, the disability movement. It is that one thing which binds together many people with disabilities. It is that which sets us off from non-disabled people. It is at the core of our being. That is why The Review of Disability Studies chose to have a Forum on disability culture in its first issue. References Brown, Steven E. (1994) Investigating a Culture of Disability: Final Report. National Institute on Disability and Rehabilitation Research, Project Number: H133F30010, 1993-1994. Pfeiffer, David. (1985) "Is There a Culture of Disability?" Proceedings of the 1984 AHSSPPE Conference, pages 130-32. Schein, Andrea. (1985) Is There a Culture of Disability? Proceedings of the 1984 AHSSPPE Conference, pages 133-38. DAVID PFEIFFER was a Resident Scholar at the Center on Disability Studies at the University of Hawaii at Manoa. He had numerous publications in the field of disability studies and other policy areas. His received his Ph.D. from the University of Rochester and he was a wheelchair user. He was a past president of the Society for Disability Studies and longtime editor of the Disability Studies Quarterly. He was a founder of The Review of Disability Studies. Disability, Identity, and Cultural Diversity Stephen French Gilson, Ph.D., and Elizabeth DePoy, Ph.D. Center for Community Inclusion and Disability Studies and School of Social Work The University of Maine Abstract: Eighteen disabled individuals, nine with disabilities present at birth and nine with acquired disabilities participated in tape recorded interviews lasting between 60 and 90 minutes. For this study, disabilities present at birth were defined as those disabilities identified or diagnosed by the age 5 years; acquired disabilities were those disabilities that occur after an individual's 5th birthday. Life stages were identified as: Middle Childhood/Adolescence (ages 8 years through 17 years); Beginning Adulthood/Young Adulthood (age 18 years through 34 years); and, Middle Adulthood/Later Adulthood (age 35 years and older). The mixed method design relying on semi-structured interview and inductive analysis was used to answer the following research questions: (a) what are the nature and scope of disability cultural identity articulated by informants; (b) and what differences in disability cultural identity are related to informant age, condition and onset? Five themes emerged from the transcripts: fitting in; disability wisdom; it's just what you do; I can do it despite what you say; and disability talk as shared interest versus talk as boring. None of these themes revealed cross disability identity. Despite being unable to answer the initial research questions in the manner anticipated, the data analysis provided important and challenging knowledge and implications for further inquiry and practice. Key words: culture, identity, qualitative inquiry, disability theory Introduction: Until the disability movement was initiated in the early 1970s, individuals with disabilities were seen as medically or functionally disadvantaged. And for the most part, health and human service professionals were educated to understand disability as a long term to permanent result of pathology or injury. Consistent with the view of disability as pathology or anomaly, services for disabled adults typically focused on individual rehabilitation or adaptation of the environment to accommodate the disabling intrinsic condition. Since the 1970s however, alternative conceptualizations of disability have been advanced in the scholarly literature with legislation, policy, and habilitative and rehabilitative practices rhetorically reflecting these theoretical changes. The shift from disability as internal condition to human condition in which the disabling factor is a hostile social context has evolved and currently dominates much of the academic discourse within disability studies. Central to the social view of disability are the notions of disability culture and cultural identity, both which position disability within the political and discursive agendas of cultural diversity. Given the multiple definitions and perspectives on the meaning of disability, how disability is explained by those who are disabled, by providers, and by policy makers is critical in determining the nature of community supports, services, policy, legislation, and overall quality of life for individuals with disabilities. This study was initiated to examine the primacy and nature of disability cultural identity in a set of diverse informants with disabilities. The study was intended to position the discussion of disability within health and social service professional practice, education, and research not only as a medical condition or explanation but, as a social and cultural phenomenon positioned within diversity, civil rights, and marginalization discourses. Literature Review Historically, disability has been conceptualized, explained, and treated in numerous ways. There is no agreement in the literature regarding a clear definition or even taxonomic organization of disability theories. However, a synthesis of the literature on disability definition reveals commonalities that fall into four categories: disability as medical, social, political, and cultural. While these categories are not mutually exclusive, they each have an important focus which influences how disabled individuals are perceived and responded to in their social contexts (Gilson & DePoy, 2002). Disability as Medical A medical approach to disability defines disability as a long term to permanent impediment and positions individuals with disabilities as less able than those who can recover from illness or who are non-disabled (Gilson &DePoy, 2002). As a form of biological determinism, the focus of disability in this definition is on physical, behavioral, psychological, cognitive, and sensory inadequacy and thus the problem to be addressed by disability services is situated within the disabled individual (Shakespeare, 1996). Interventions are designed to be curative, restorative, or adaptive. That is to say, services are aimed at curing the condition if possible, and if not, restoring function to the extent possible, and then adapting the environment to diminish the limitations imposed by the individual condition (Finkelstein, 1991; Gilson & DePoy; Quinn, 1998). Disability as Social In this broad perspective disability is viewed as a hostile environment in which social barriers limit community participation and civil rights of individuals with selected impairments (Hahn, 1993; Ravaud & Stiker, 2001; Swain, Finkelstein, French, & Oliver, 1993). Negative attitudes, limited physical access, limited access to communication and/or economic, political, or social resources and to the rights and privileges of a social group are considered as just some of the barriers that interfere with the impaired individual's potential to actualize his/her desired roles (Barnes & Mercer as cited in Barnes & Mercer, 1997). Thus impairment is seen as diversity of the human condition and disability is the imposition of purposive restrictions on those with impairments (Swain et al.). The focus of intervention from the social perspective shifts from the individual to the social systems that create disabling circumstances. Political Model of Disability Closely aligned with the social model of disability but moving the focal emphasis into the domain of power and resources is the political model (Stone, 1986; 2002). In this view, the disabling factor is curtailment or withholding of the opportunity to earn or possess economic resources in part or in total from impaired individuals. The disability from the political vantage point therefore refers to the absence or limitation of resources to be exchanged for privilege in a global economic environment (Gilson & DePoy, 2002; Oliver, 1992; Scotch & Schriner, 1997). Cultural Definition of Disability Defining disability as culture transcends internal determinants of disability, subsumes social and political definitions, and creates a cultural discourse that characterizes the collective of disabled persons. Cultural views of disability suggest that all individuals who define themselves as disabled belong to a unique group that shares experiences, tacit rules, language, and discourse. In this view, the notion of disability is one of group belongingness and distinction from other groups who do not share the disability identity (Hahn, 1993). Within this definition, issues of race, class, gender, and power differential are important determinants of the shared experiences that bind disabled people together in a single, identifiable community of concern (Charlton, 1998; Linton, 1998). Furthermore, positioning disability within current multicultural discourse provides the disabled individual with a precedent and social action model enacted by other minority groups to counter discrimination. It is therefore not surprising that disabled activists are asserting disability identity as a construct that is or should be central to the lived experience of disabled individuals. While disability identity has been examined, characterized, and described (Gill, 1997; Linton, 1998), the complexity of age, condition, and circumstances of onset have not been studied. Research building on current knowledge, and further informing theory, policy, professional education and practice is therefore needed to elucidate disability identity as it occurs in diverse individuals. Method A mixed method design relying on semi-structured interview and inductive analysis was used to answer the following research questions: 1. What are the nature and scope of disability cultural identity articulated by informants? 2. What differences in disability cultural identity are related to informant age, condition and onset? Eighteen informants, ranging in age from 5 through 65, with diverse birth-based and acquired disabilities at corresponding life stages participated. Disabilities present at birth, for this study, were defined as those disabilities that are identified or diagnosed by the age 5. Acquired disabilities are those disabilities that occur after an individual's 5th birthday. Life stages were categorized as Middle Childhood/Adolescence (ages 8 years through 17 years); Beginning Adulthood/Young Adulthood (age 18 years through 34 years); and, Middle Adulthood/Later Adulthood (age 35 years and older). Table 1 presents the demographic and personal characteristics of the informants. Announcements in multiple, accessible formats were distributed to community agencies serving children and adults with diverse disabilities. Informants and/or their families were asked to contact the interviewer to discuss the study. Informants were selected purposively to represent a range of ages and conditions, as well as gender and ethnic diversity. Following informed consent from adults and assent from children, interviews were scheduled and conducted. Each interview lasted between one and two hours. Broad, open-ended questions were posed at the beginning of the interview and followed by semi-structured probe questions if the necessary data were not offered in open-ended responses. All interviews were audio-taped and transcribed verbatim with each line of text numbered. Thematic analysis was conducted with the intended purpose of providing categories for content analysis to examine differences in identity related to age and disability. However, content analysis was not performed because the data analysis did not yield clear categories relevant to these queries. To assure rigor, authenticity and trustworthiness, the analysis was completed independently by two investigators and then negotiated for meaning. Findings Five themes emerged from the transcripts. However, none revealed cross disability identity as discussed in the literature and thus we were unable to answer the initial research questions. Despite the lack of answers to the initial questions, the data analysis provided important and challenging knowledge and implications for further inquiry and practice. We present each of the themes below with exemplars from the transcripts. Theme #1- Fitting In Contrary to the construct of disability as separate from mainstream culture, informants discussed their desire for acceptance in non-disabled groups to a greater or lesser degree. Youth were particularly vocal about wanting to be "just like everyone else." For example, one informant stated, "I mean most people even like my self are just like normal, so everybody that are my friends are like just normal people because, I mean, I usually have friends that are normal people that don't have any disability at all." Only two of the youth articulated their differences from non-disabled peers, and their affinity to others with disabilities. As one youth lamented, "My girlfriend told me that she thinks like when girls see me they don't really think of me as like a regular guy." Another youth stated, "My disabled friends have more of an idea of where I am coming from when I talk about..." In both adulthood groups, informants saw their disabilities as personal characteristics among many others. Three were active in disability organizations. Yet, none, regardless of their involvement with disability efforts and organizations articulated belongingness to a separate and distinct disability culture. To the contrary, one informant who used a wheelchair stated, "I mean people; people don't look at me like I have a disability." Of particular note within this theme was the interaction between limitation and disability identity. Although not initially or necessarily desired, the strongest expression of disability identification among the informants emerged from unwanted negative experiences of isolation, discrimination, and exclusion. The informant who stated, "So I have been just thumping along kind of glued, imprisoned in this room" strongly identified as a disabled man. It is curious to note that with one exception, even those who perceived disability as primary to their lives and personal identities did not discuss disability identity as cultural pride. The exception was the informant who at the time of the interview was a professional studies graduate student who was reading scholarly works in disability studies, advocacy, and social justice. "I think that I'm at a different place in identifying, I mean I've had more years in having identified, and very proudly so. But it certainly took me a long time to get to that point." Common to all informants, regardless of age or disability pride, was the experience that acceptance of disabled individuals within non-disabled groups is a function of time and exposure necessary for comfort of all involved. Theme #2-Disability Wisdom The second theme that was commonly expressed by informants was the unique knowledge that comes from living with a disabling condition. While informants did not see disability as a distinct culture, many spoke about how living with non-typical conditions provoked unique learning. They believed that this learning would not have occurred without the disability. Not all saw this wisdom as desirable but many did. For example, one informant stated, "I am happy that this happened to me because it has made me a better person, and has made me a different person than I was. I don't know how long it would have taken me to get where I am today, and I don't consider myself financially successful. I haven't really achieved anything of great momentum to the public or to anybody but I feel that I have gained a lot inside and have become a better person and a greater person because of it. And I don't know if that ever would have happened if I hadn't been faced with the challenges that I have been faced with." Theme #3-It's Just What You Do This theme refers to the continuum of approaches that respondents discussed regarding the primacy of disability in their lives. On one extreme, the disability shaped the daily life and personal identity of the respondent. "Having friends is pretty much non-existent because I'm pretty much off the beaten path, all the friends I had were all back in [name of town], pre-injury. When we moved out here, my brother and his wife developed friends, but I didn't because there are no people around here like me so it is pretty difficult. These problems keep me around and confined to the house." On the other extreme, tasks related to the disabling condition were simply seen as part of living and something that regardless of the nature of the challenge, all people face. For example, one informant stated, "What ever is gonna happen is gonna happen, I can't change that." Another said, "I deal with my disability when it is shoved in my face like when I have to do something in a practical way or I have to fill out some papers and then I get on with being just a human being." No pattern related to age or nature of disability was found. Theme #4-I Can Do It Despite What You Say A strong theme, particularly in individuals who were not embittered by disability, was the notion that the disabling condition posed a challenge for "normalcy" of activity. Some informants were even motivated to perform highly competitive sports, work and so forth as a means to debunk the myth that disability is equivalent to inability. As one informant commented, "I have been determined for a long time to become a nurse and it is going to be a sight to be seen when I walk across the stage and get my diploma because I had to go through so much and I was determined to graduate." In large part as a response to "a psychologist who said he was going to suggest to my parents that they put me into a nursing home or institution or something, which I would never do anything," one informant has set a career goal of public speaking and counseling disabled people. Theme #5-Disability Talk As Shared Interest Versus Talk As Boring This theme refers to how informants perceived the topic of disability when it arose in conversation. Respondents described a continuum of responses to conversations about their conditions and disability in general. Some experienced discussions of conditions and resources as an opportunity to share feelings and information with other disabled individuals or those concerned with disability issues while others felt that any reference to disability in conversation was a burdensome and boring topic. One informant expressed both perspectives. "But I don't talk to them [non-disabled individuals] as much about disability issues as I do with my disabled friends. Because I also don't want to make it the focus of my life and at times it has been the focus of my life, more so than I would care for it to be." Illustrating the burden of disability conversations, one informant asserted, "you didn't want to hurt them, but what you really wanted to do was to kick their butt out the door." Others described their conversation as non-disability focused, "we talk about girls and what the other guys are doing." One informant noted that, "When I am around students with other disabilities, its student related, problems, questions, support. As a matter of fact I don't really know that any of us get that personal when we get together, at least not that I've seen. We may know basic things that we are married or not, age, what the disabilities are, but most of the time its student related issues." On the other end of the continuum, is the phenomenon of disability conversation as special sharing as exemplified by the following quote, "You know I feel like I have more of a bond with people with disabilities or people with spinal cord injuries, there are just some things that are a part of me that I don't even share with [my husband], he wasn't there he doesn't even know what I went through. It's just like my own private little pocket of all kinds of stuff." Sharing resources was also a component of disability conversation, as noted by one informant. "With the disabled friends I can discuss things about my disability. Say, because the disabled friends and I have the exact same disability, we exchange things like how you deal with this thing and how you handle that problem and that kind of thing. It is back and forth information." In summary, the five themes that emerged from the data set depicted disability identity as a personal, individual characteristic that varied in its primacy, importance, and meaning to each informant. With the exception of one informant who was studying disability and social justice scholarship, none of the informants expressed an awareness of disability culture as described in the literature. Conclusions The initial questions that framed this study were founded on theory advanced in the disability studies literature regarding the existence and desirability of a culture of disability that included membership from individuals with diverse conditions and experiences. Theoretically, members of the disability culture are posited to be bound by the experience of oppression and marginalization and to share a common language, values, and political powerlessness. Moreover, membership, while restrictive in some sense, is asserted by some disability studies and health and social service professional scholars to be an important prerequisite for personal esteem, sense of community, and assertion of civil rights on the part of all individuals who identify as disabled regardless of medical condition. Therefore, we believed that it was important to uncover the interaction between personal characteristics, onset and nature of disability, and disability cultural identity as a means to promote what the disability literature deemed as positive and essential group belongingness. However, this data set revealed that disability identity is distinct from cultural identity. Informants illustrated significant diversity in their responses to their disabling conditions. Some saw the disability as an important personal characteristic that defined their lives, social interactions, daily activities, and future dreams while others did not. Some saw disability as creating wisdom, while others saw it as a negative, restrictive, and limiting learning experience. This study did not support the construct of a distinct culture of disability and thus questions regarding how disability identity is related to developmental phase, onset, and nature of disability could not be answered. The findings, while unexpected, raise important questions about the fit of the construct of culture with disability identity. The notion of disability as culture emerged from academic discourse and is discussed primarily among academics and students. It is interesting to note that the only informant who was conversant in the cultural discourse was a graduate student who was exposed to this body of literature. Thus, the cultural perspective of disability seems to be a public yet elite discussion among scholars, and carries with it the political aim of joining disability with other social movements in which power has been garnered through cultural distinction and positioning. Thus, the application of the construct of culture to disability identity may be a useful and purposive academic aim to replicate and exploit the success of ethnic cultures in obtaining civil rights and political recognition. The question of disability culture as transductive thinking is also raised by this set of transcripts. Transduction is the attribution of a label or category to a phenomenon based on only one or a few of many characteristics. For example, using transductive thinking, we might assert that people are dogs because both people and dogs have noses, eyes and ears and so forth. In transductive thinking, the commonalities are used to make comparisons but differences are not included in the reasoning. Applied to the disability literature, transductive thinking would suggest that the experiences of disabled individuals who as a result of their condition experience discrimination and exclusion are the characteristics that have been held in common with other minority groups. Therefore, the cultural paradigm which has been successfully applied to these ethnic and other marginalized minorities is assumed to fit disabled individuals based on this one essential characteristic. However, the findings of this study challenge that assumption. Because only one of the informants talked about a common identity with other disabled individuals, the degree to which the presence of a disabling condition is the criterion for membership in a cultural group is open for challenge and future inquiry. Further, the diversity of conditions and contexts in which these conditions are experienced seemed to obfuscate a group identity or even a unique language among the informants in this study. Implications The findings of this study have important implications for disability theory, as well as professional practice, research, and education as well as for disability studies in general. Regarding disability theory, the findings of this study raise questions regarding the distinction between cultural and individual disability identity. Individual comfort with one's disabling condition and thus one's disability identity seem to be idiosyncratic, personal, and individual in nature in this informant group. One's level of acceptance of a disabling condition and the degree to which the condition is experienced as positive further seemed to provide a lens through which the fit between the disabled individual and other disabled as well as non-disabled groups was perceived. The cultural paradigm, while critical to policy, academic theorizing, and social justice concerns seemed not to be useful or even relevant to the identity of individuals in this study who have disabling conditions. Positioning disability identity as a part of human diversity may be a more accurate context in which to begin to understand how a disabling condition affects the individual in his/her view of self, life goals, and daily activity. Aligning disability with other oppressed cultures seems to provide a purposive and powerful model for the assertion of previously denied civil rights, but not to explain individual disability identity. A second and important implication of this study for research and practice is the recognition that the debate about defining disability as culture, social, political, or medical circumstance merges from the lack of distinction in the literature between description and explanation. Informants described their disabilities in terms of their activity and their limitations and some offered explanations for what they were able to do or not do. Analysis of the data suggests that disability can be best understood at several levels and those descriptors of disability seem to lie in human activity. Medical, social, political, and cultural definitions lie in the domain of explanation and therefore are not necessarily competing. Rather, explanatory analysis provides analytic depth to descriptions of human activity. The need to advance theory and further investigation are therefore suggested by this study. For professional practice, research, and education, two important confounding positions that have characterized these domains provide the backdrop for the implications of the study. Many health and social service professions have a history of viewing individuals as unique while simultaneously legitimizing categories or groupings of specific disenfranchised and marginalized communities. How then do health and social service professionals make a determination of how to respond to disability? The study seems to support recent movement by some professions to replace identity politics with broad categories of diversity that apply to all individuals (Council on Social Work Education, 2001). Descriptive understandings of disability as another element of the diversity of human activity fit well with the contemporary views of some progressive professional thinking. Adding the explanatory dimension guides the direction for thinking and action about health and social service interventions. For example, disability as medical phenomena may provide the basis for clinical intervention with disabled individuals, while viewing disability through a cultural lens forms the foundation rationale for policy and environmental change strategies. This study, while unsuccessful in answering initial questions about disability identity and culture has advanced important knowledge that has the potential to advance conceptual clarity and inform professional practice and disability studies discourse. Further inquiry and theory building regarding the nature of disability as human activity are warranted in order for much of professional practice to approach disability from an informed, clear, and purposive perspective. STEPHEN FRENCH GILSON is Associate Professor of Disability Studies and Social Work, University of Maine. ELIZABETH DEPOY is Professor of Disability Studies and Social Work, University of Maine. Correspondence regarding this manuscript should be sent to Stephen French Gilson, Ph.D., The University of Maine, School of Social Work, 5770 Annex C, Orono, ME, 04469 Stephen_Gilson@umit.maine.edu, 207-581-2409 References Barnes, C., & Mercer, G. (1997). Doing disability research. Leeds, England: Disability Press. Charlton, J. I. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press. Council on Social Work Education. (2001). Educational policy and accreditation standards [Online]. Retrieved January 7, 2002, from http://www.cswe.org/accreditation/EPAS/epas.pdf. Finkelstein, V. (1991). Disability: An administrative challenge? In M. Oliver (Ed.), Social work, disabled people and disabling environment, (pp. 19-39). London: Jessica Kingsley. Gill, C. (1997). "Four types of integration in disability identity development." Journal of Vocational Rehabilitation, 9, 39-46. Gilson, S.F., & DePoy, E (2002) "Theoretical approaches to informing disability content in social work education." Journal of Social Work Education. Hahn, H. (1993). The politics of physical differences: Disability and discrimination. In M. Nagler (Ed.), Perspectives on disability (2nd ed.), (pp. 37-42). Palo Alto, CA: Health Markets Research. Linton, S. (1998). Claiming disability: Knowledge and identity. New York: New York University Press. Quinn, P. (1998). Understanding disability: A lifespan approach. Thousand Oaks, CA: Sage. Ravaud, J., & Stiker, H. (2001). Inclusion/exclusion: An analysis of historical and cultural meanings. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies, (pp. 490-512). Thousand Oaks, CA: Sage. Scotch, R.K. (1989). "Politics and policy in the history of the disability rights movement." Milbank Quarterly, 67(2), (Suppl. 2), 380-400. Scotch, R. K. (2001). From goodwill to civil rights: Transforming federal disability policy (2nd ed.). Philadelphia: Temple University Press. Scotch, R., & Schriner, K. (1997). Disability as human variation: Implications for policy. The Annals of the American Academy of Political and Social Science, 549, 148-160. Shakespeare, T. (1996). Disability, identity and difference. In G. Barnes & G. Mercer (Eds.), Exploring the divide: Illness and disability, (pp. 94-113). Leeds, United Kingdom: The Disability Press. Stone, D. A. (1986). The disabled state. Philadelphia, PA: Temple University Press. Stone, D.A. (2002). Policy paradox: The art of political decision making (Revised Edition). New York: W.W. Norton. Swain, J., Finkelstein, V., French, S., & Oliver, M. (Eds.). (1993). Disabling barriers - Enabling environments. London: Sage. On Deaf Ears: Disabled in Hollywood Mark Medoff School of Theatre The Florida State University Abstract: A playwright/screenwriter reflects on two decades of pitching American Sign Language inflected stories at deaf Hollywood ears. Keywords: Hollywood, Deaf, Solipsism In The Hands of Its Enemy, the second bilingual (English and American Sign Language) play I wrote, there was a line I've used almost as a mantra: "The thing I love about the theater is the collaboration of separate spirits who share the responsibility of a play's fate." Making theater bears the same power in my experience as playing sports and living within a family. As a model for the notion of the sum being greater than its constituent parts, making theater has been as illuminating to me about how to live in the world as playing on dozens of sports teams from the sixth grade into my fifties; as complex and ultimately satisfying as being part of families I was born to, married into, procreated and adopted. In 1979, I met Phyllis Frelich, an actor who happens to be deaf and doesn't speak out loud. Since that year, she and her husband Bob Steinberg have been part of a team on which I play, a family in which I live. I've written five plays now for Phyllis that incorporate English and American Sign Language. The first, Children of a Lesser God, changed our lives. I know I could get the bright idea to adapt the nearest phone book into a stage piece for deaf and hearing actors and some theater somewhere would welcome me and my deaf and hearing buddies and we would have the joy and challenge of trying make that phone book live for an audience. Film, though, is a different kettle of ears where my work with Phyllis, with the deaf, with American Sign Language is concerned. In March 1988, for one week, there was an event at predominantly deaf Gallaudet University in Washington, DC, that came to be known as the Deaf Revolution, driven by a cry, signed, written, and spoken of "Deaf President Now!" In the year following that "revolution," Tony Award winner, Emmy nominee Phyllis, her designer-actor husband Bob, and I tried to sell an idea for a fiction set against the events at Gallaudet. A single sentence at one of our pitch meetings was indicative of a familiar way of thinking about "diversity" in America: We pitched our story concerning a deaf mother and daughter at cultural and generational odds; at the end of our carefully orchestrated narration, one of those ubiquitous children in Armani who have no discernable job in Hollywood studios but to over-populate meetings in studio chambers, said in his youthful wisdom, "But there's already been a deaf movie." That sentence struck me, sadly, as both epigrammatic and epitaphic. This was not the first time I had "pitched" a movie idea in Hollywood that involved Phyllis at the center. Our favorite encounter involved a pitch at Warner Bros. back in the early 80s. We were running on the notoriety of the success of Children of a Lesser God in New York, a Tony for Phyllis, a Tony for me. The idea we presented went like this: Phyllis's character has been in a mental institution since she was very young. She has no history and no language other than the combination of incomprehensible speech and gesture that she's invented for herself. A lawyer is in trouble with some of the nasty people he's been keeping out of jail and has himself committed to the same facility to hide out. Phyllis immediately attaches herself to the most interesting new person in her world. She plays cards with him. She has an amazing visual memory and always wins. The mob finds the lawyer and he is able to escape but only with Phyllis's help (she knows where the Thorazine is kept and disables his pursuers) and they end up on the run together, the definitive innocent with a reluctant teacher who in turn is taught. We sketched a lot of fun doing all her "firsts": first restaurant, first motel, first airplane, first love, first kiss...We find out that Phyllis' father is a major mobster who had her put away because of something she witnessed. Phyllis and her lawyer companion wind up in Vegas; using her visual memory and card playing skills, she and her lawyer partner/love interest break the bank at her father's casino. The standard "pitch meeting" in Hollywood has the writer narrating and/or acting out the story in a very compressed 10-15 minute stand-up (or leaning-forward) routine. Our plan was that I would pitch the basic three act structure of the movie with Bob interpreting for Phyllis; then Phyllis would take over with Bob interpreting for the listeners while she signed. At a pre-planned point, Bob would stop interpreting and Phyllis would go it alone, in silence, using ASL, so that the studio folks would get an idea of what a brilliant mimic and comedienne she is, with or without the standard compensation for her deafness in a hearing world. When the moment came for Phyllis to go solo, she rose, she moved, she signed, she used conceptual gesture and the sort of inarticulate but comprehensible (we thought) noises indigenous to her character. Phyllis, Bob, nor I will ever forget the looks of abject confusion on the faces of the president of Warner Bros. and his Armani Army as Phyllis played out some of the scenes for them. They shriveled in discomfort and were mightily relieved when we finished. And left. If the story we pitched seems reminiscent of a movie called Rain Man, we have, for years, thought so too. Plagiarism, though, can only exist if its opposite exists, and in Hollywood there is no such thing as plagiarism because there is no such thing as originality; everything is in the air for anyone to breath and exhale back into the atmosphere, naming carbon monoxide fresh air. In the most basic way, those "normal" executives, those arbiters of cultural taste, were discomfited by the alien, "disabled" person in the room. And though it may be only me, that discomfort seemed but a step away from contempt. In the mid-90s sometime, Disney wanted to talk to me about doing the story of the Gallaudet revolution, a more or less historical two-hour movie. I didn't want to do that. I had learned the hard way that dealing with living subjects was a nightmare. Though I knew I was supposed to create an "artistic distance" between me and them, that I would need to embellish, abridge, even alter their stories for dramatic purposes, I inevitably felt responsible for the basic verity of their lives, the sanctity of their secrets, and grew to hate the inevitable disparate needs between the producing organization and the subject. An example: I was signed to write about a famous football coach once. When I turned in the first draft, a TV executive noted that the subject seemed awfully pristine, even noble. I was asked, "Didn't he ever cheat on his wife?" I said I certainly had no evidence of that. The TV executive suggested I invent an affair for the coach. I noted that we were dealing with a real person, still alive, not a creation of my imagination, and that to make up a hurtful event like the executive was suggesting was perfidious and egregious. At that point in my TV/movie life, I was stunned by the suggestion. Though I think I wrote a good script about that football coach, the script is moldering on a network shelf somewhere. I had a similar experience with a script about a famous Russian dissident whose wife spent over a decade trying to get him released from a Soviet prison. The wife really didn't want a movie made about her and her husband's experiences. She wanted to live her life with her husband and her children quietly, even anonymously. Whereas he was very forthcoming, she was not. The head of a major Hollywood studio asked me if I thought she'd had any affairs during that decade-plus. I replied that I had only heard rumors I could not substantiate. In truth, it wasn't that I couldn't substantiate the rumors, but that I wasn't going to try. Another moldering script. As a screenwriter, I became pretty unshockable by the shifting moral ground in Hollywood. I knew that in the inner sanctum of film and TV "creative development," there was not only a modicum of creativity but there was a profound dearth of moral conviction - unless a particular moral stance was pragmatic, pragmatic being synonymous with: 1) Does it work for the story? 2) Will it sell tickets? I was ever reminded of the old saw that goes: "It's not called Show Art, it's called Show Business." I should not have been surprised, really, to learn that Hollywood has some highly refined and peculiar views of the disabled, as well as foreign languages. My memory of films made in Hollywood during my childhood is that all Germans had one clich‚d Germanic accent, regardless of class or region; same with the Russians; and everyone else from Europe had a British accent. Asians were modeled on the now infamous Charlie Chan accent. No one, to my memory, was ever from a Scandinavian country. All Native Americans sounded like Tonto. Everyone from Latin America, Central America, Cuba, and Mexico sounded like Eli Wallach who, I think, played every person of Spanish descent with some hybridized Spanish-New York accent from around 1950 to the recent present when, amazingly enough, many Latin roles began to be played by people of Latin heritage (though we haven't reached the point where any distinction is made among those of Brazilian extraction, who speak Portuguese, Castilians, Basques, or Argentines who emigrated from Nazi Germany. The etymology of the name holds force, however; if it sounds Latin, it's good. Phyllis, Bob, and I had another story we wanted to tell, one about a group from a deaf school in New Mexico trying to get to the revolution of 1988 at Gallaudet in a stolen school van. Lo and behold, Disney bought the pitch and moved ahead with us until somebody realized The Mouse was developing a movie intended to have real deaf people in it and that sub-titles were integral to what I was planning to write and shoot. Two common errors hearing people make about the deaf are 1) all deaf people are fabulous lip readers (when in fact the best lip readers only get a modest percentage of what people say) and 2) most deaf people can learn to speak so that hearing people can understand them (a large percentage of deaf people do not speak, period, and many choose not to speak). We were informed that Disney didn't want sub-titles. We explained there was no way, given the proximity of the camera to the actors that we could do a viable story with a cast that was at least half deaf without asking the audience to read sub-titles at least some of the time. Disney was adamant; they could - or would - not do a Sunday night movie that required children to read or that their parents would have to read to them. It didn't take Phyllis, Bob, and me long to conclude that what Disney wanted was a deaf story without deaf people in it. The project died at Disney but became a play called ROAD TO A REVOLUTION, commissioned by Deaf West Theater. As with the phone book reference earlier, we had the joy and challenge of working on the idea and putting it in front of an audience. I did a movie called Clara's Heart back in the late 80s, starring Whoopi Goldberg, an extremely nice lady and a terrific comedienne though not a trained dramatic actor. The producer, director and I very much wanted Alfre Woodard for the role. The studio involved made it clear though that the movie would only get made if Whoopi would do it. The inference was that, in studio-think, there was only one African American actress in the world and, in order to do movies with African Americans at the center, she would have to do all of them. Sidney Poitier had earlier born the mantle of The African American Actor. Eddie Murphy got it for a while. Denzel Washington and Halle Berry share it now. For several years, Marlee Matlin, currently The Deaf Actor for Hollywood, and I tried to sell a remake of Johnny Belinda, a story about a deaf woman which has been twice made with hearing actors. Those were funny movies, largely because the hearing actors playing the deaf character had no clue how to convincingly pretend to be someone and something they weren't. For all of Marlee's popularity, we weren't able to set that project up. On the face of the rejection was reasoning that had to do with lack of interest in redoing something that had already been done, however ineptly. I did win one notable battle in Hollywood with one of my plays that involved a deaf character. When I sold the film rights to Children of a Lesser God, I asked for assurances that the central deaf character, Sarah Norman, would be played by a deaf actor. I was assured the actor would be deaf. Within a matter of days after signing away the rights, I was asked whether I preferred Goldie Hawn or Meryl Streep for the role. The only real power a writer has in film is that which he can exert through the people who have the power - studios heads, producers, directors. Over the course of several years, I was finally able to exact a promise from the people with the power that using a hearing actor in a role made notable by a deaf actor would not only be unfair, but would cause a backlash of considerable size from the millions of deaf and hard of hearing people around the world the powers that be would like to come see their movie. There have been several movies that have dealt powerfully with motor disabilities: Born on the Fourth of July, Coming Home, The Waterdance. Mostly, though, Hollywood salves its conscience where the disabled are concerned by periodically making TV or feature films about what can be called "The Hollywood Retarded Person," whether the person -- usually male -- is technically retarded or not. Nice mentally defective people, entertaining, and ultimately, grandly sentimentalized. And in some amazing synchronicity, along with their looks of Edenic innocence, each Hollywood Retarded Person always wear pants that are just slightly too short. This is a signal that none of them has bought a pair of pants since he was 12, right before the final growth spurt, and that more importantly, no one has thought to update his wardrobe since. In recent years, Dustin Hoffman, Tom Hanks, Kevin Bacon, William H. Macy, Billy Bob Thornton, and most recently, Cuba Gooding, Jr., fine actors all, have stooped to a variation of the short pant retarded guy, reaping accolades as each salved our guilt with the balm of righteousness in this time of under-representation of any real variety of stories of persons with disabilities. Giving Oscars to people who play Hollywood Retarded Persons - Hoffman, Hanks - makes me wonder at the legitimacy of Marlee Matlin's Oscar for Children of a Lesser God. Was it compulsory that she win to ease consciences in a flick that would soon be described to me as "But there's already been a deaf movie"? Did the mass of Academy voters pretend Marlee was a real and valid actor because most of the voters knew in their cool business hearts there would only be another analogous opportunity for a deaf actor over their dead bodies? I can't say I ever forget that my friend Phyllis is deaf. Neither do I ever forget that she's the best actor I've ever been privileged to work with. After the success of Children of a Lesser God, it seems I was always called to gauge my interest in writing the plethora of so-called "Disease of the Week Movies" in the 80s. I worked on one feature about a blind woman (who would no doubt have been played by a sighted actor) and another about a young man with cerebral palsy who, with his father, started and finished the Ironman in Hawaii (same as above). I turn those offers down now, as much because the view of those with the money to make the movies is hackneyed as because I no longer hope that any great effort will be made to populate the movies with disabled actors. It's good to see Marlee on West Wing with some regularity; it's terrific that Deanne Bray has her own show on Sue Thomas, Private Eye. It would be great to see a new version of Ironside with a disabled actor in that wheelchair. But show business is largely not disability-accessible. Unless you're wearing an iron lung, don't hold your breath. MARK MEDOFF won a Tony Award for Children of a Lesser God. He is currently Reynolds Eminent Scholar at Florida State University and recently directed the feature film Children On Their Birthdays. "I'll Pick You Up By Your Back Brace and Throw You Like a Suitcase": On Naming Discrimination Against Disability Jillian Weise University of North Carolina at Greensboro Abstract: What word is there for discrimination practiced against disability? In the following essay, I will explore-through personal narrative-incidents of discrimination in the academic, non-academic, and reader-text environments. Then I will discuss the various meanings of the word ableist and the importance of placing a name for discrimination against disability in the public domain. Key Words: Disability, Discrimination, Ableist/Ableism "What is politically correct these days?" a visiting poet said during a workshop class at the University of North Carolina at Greensboro. We were discussing a poem in which a deaf and physically challenged boy enlightens the speaker during church. "Is it disabled? Malformed?" he asked the class. No one answered. I bent my head down and pretended to focus on the language of the poem. I bent my head down because I have bangs for hiding my eyes. I wanted the bangs to hide my eyes because his words named me-the disabled, the malformed. Me, with prosthetic leg and metal rods along my spine. Had he not read my own poem included in the workshop packet? Had he not even read the title, "Crip Language"? The title alone should have informed him of his audience. Did he not notice that I carried a blue and pink plastic seat into class? Did he not notice that I used this child's device to sit on so I would be tall enough to see over the table? And even if he didn't read or notice any of these things, was he really going to critique the poem using discriminatory, offensive language? "Is it deficient? Incapacitated?" he said. "I think the boy's deficiency..." another student adopted his language to continue discussing the poem. "There's a Professor at Princeton University, many people think this is very controversial, even fascist," he said. "Professor Singer says that if we kill defective animals, why don't we kill defective babies?" I did not cry. I did not cry. A list of options ran through my head. I could stand up and walk out. But if I walked out, how would I explain myself? What word could I use to describe the visiting Professor's choices during class? Was there a word for discrimination against disability? What was the word? I could raise my hand and ask him to refrain from making discriminatory remarks. But he was the visiting poet. What did I know? I couldn't even find the word to describe his language. I felt voiceless and trapped. When it was time to discuss my poem, I said, "I'd rather not." "But I didn't have a chance to write much on your poem, so I'd really like to talk about it," he said. "No thanks," I said. His comments continued to reverberate in my head as class ended, as I drove home, as I type this sentence. If his comments had been aimed at African Americans, and if I were a member of that minority group, then I would have redress through the NAACP. For the sake of conjecture and analogy, let us consider the same conversation using racist language. The only word I will change in this analogy is the second use of "defective." What if the visiting Professor had said, "If we kill defective animals, why don't we kill black babies?" Or what if he had said, "If we kill defective animals, why don't we kill female babies?" If he had made either of these remarks without placing Professor Singer's comment in context, we would label him as racist or sexist. Let us also consider his question of "What is politically correct these days?" If he had been discussing the politically correct word for African Americans, he may have said, "Is it African Americans? Blacks? Niggers?" We would call him racist. We may even write the NAACP and ask for a public apology, a withdrawal of his tenure. After all, we do not want racism infiltrating the minds of our youth through a reputable Professor, do we? However, if the Professor is discriminating against disability, then his comments are validated because none of us can name what offense, if any, he has committed. If he had made offensive comments toward African Americans or women, then at least a word exists for describing his language and therefore, his offense. We would at least have the power of words like racist, sexist. Without a word for discrimination against disability, we are powerless. Here is another incident that illustrates how discrimination against disability occurs outside the academic setting and how this discrimination receives the support of the public. The public, in this case, was an audience of approximately one hundred people attending a singer-songwriter event at Ace's Basement in Greensboro, North Carolina. The audience consisted of teenagers, college students, and a few business professionals. The venue smelled of cigarette smoke and cheap beer. The main act began setting up their equipment. During sound check, the guitarist spoke into a microphone, yelling this remark to someone in the audience. "I will pick you up by your back brace and throw you like a suitcase. I'm going to do you like Christopher Reeves [sic], take that straw and blow you on out of here..." he said. The audience cheered and clapped. Once again, I felt suffocated by the public approval given to discriminatory declarations. The guitarist's evocative threat, "throw you like a suitcase," reminded me of how other minorities have been treated when sharing space with the public. I thought of segregation. Surely today, we would not overhear a white person say to a black person, "I will throw you out of here like a suitcase." But, in the unfortunate situation where we would overhear this, we have in our consciousness a word: racism. We have a tool for defining and defending: language. Even though the incident occurred in a less reputable setting, in a bar, at a concert-what does the guitarist's comment and the audience's response say about the state of discriminating against disability in today's society? I argue that the incident described says, "Vocalized prejudice against disability is okay." So far, the incidents I address have occurred in an academic setting and in a non-academic setting. But we do not have to travel to an event to see discriminatory language in action. If we are to evaluate discrimination against disability, perhaps we should begin with the Bible's punishment of lepers or Shakespeare's treatment of Caliban. However, we do not need to search older texts for this treatment of disability. It is pervasive in contemporary literature. The third incident I will describe occurs between reader and text. There are multiple challenges to taking these excerpts and showing them as examples of discrimination. The excerpts will be out of context. I will commit the same act as the visiting poet who placed Professor Singer's philosophy out of context. Since I am only offended by sentences that use discriminatory language, I will illustrate those sentences. But in doing this, I will neglect to assess the work as a whole. Also, what would happen if there were guidelines to what a person could and couldn't write? I am not advising that these words should not have been written. I am not arguing for boundaries on what a person writes. I am asking for a language, for words, to describe the characters views in these texts, the guitarist's comments to the audience, and the professor's discussion of a poem. While reading Open City, a journal of literature and art funded by the National Endowment for the Arts (NEA) and New York State Council on the Arts (NYSCA), I encountered the following passage in Sa‹d Sayrafiezadeh's short story, "My Mother and the Stranger." The main character in Sayrafiezadeh's story discusses their "own anti-Semitic associations" which they admit they are in "great possession of."1 "I have always asserted that my mother's Jewishness is why I have found her so ugly my entire life, and why as her offspring I have often found myself to be so ugly. It is certainly helped by the fact that my mother does not have her hair done... does not date men ever, does not have sex with men ever, does not exhibit any sexuality... And the one time she wore a skirt I was confused and made vaguely uncomfortable by the sight of her calves and thighs in stockings, uncomfortable in the way one is when one watches a handicapped person attempting to dance, for instance. It is a painful attempt."2 I found it difficult to continue reading the short story. I flinched. I put the text down. The author writes about a character's awareness of anti-Semitic views. However, Sayrafiezadeh does not write about the character's awareness of their discrimination against disability. Yet clearly, a character who thinks "it is a painful attempt" to watch a "handicapped person" dance is discriminating. Since I could not initially continue reading the text, I called a Jewish colleague to discover her reaction to the text. She was not offended. "Why is it that you are more offended by disability than I am about the anti-Semitic comment?" she said. "I don't know," I said. I knew that the text had proven unreadable for me. I knew that if the short story had come from the literary canon, it would have been easier to think of the character's views as arcane and no longer acceptable. But since the story was contemporary, and since it so blatantly ostracized the "handicapped" from the nondisabled, I was offended. "I think it's because I've been brought up studying and talking about Judaism and anti-Semitism. But for you, it's not something that's been talked about. It's not something that people discuss." "What do you mean?" "Well, I can place what you read over there. I can think, 'Okay, this person is this type of person who thinks these things.' I can be more objective about it. I don't like it but it doesn't upset me to my core," she said. After speaking with her, I returned to reading Open City. My experience as a reader was about to get worse. Mark Jude Poirier's short story, "Happy Pills," is written in second person which makes the following sentences even more disturbing to read. "You have every reason to be afraid of Thelma. She is retarded and smells like your grandmother, like cigarette smoke and cleaning fluid. Her eyes are crazy; there is nothing behind them."3 Since the reader does not have the mask of a character, the reader must adopt the views of the second person, or at least enter the contract of believing for as many pages as the story continues. Therefore, "you" discriminate against mental impediment. "You" reduce the "retarded" girl to a corpse: "There is nothing behind them [her eyes]." Poirier's second person further exploits disability by describing a rumored rape scene involving Thelma in which older boys "poked her pussy with a stick."4 At this point, I am numb. I continue reading to find out how much more offensive it can possibly be. "You walk into Sam Goody Music and you're greeted by a robotic voice: Welcome to Sam Goody. The source of the welcome is a deformed woman awkwardly perched in a wheelchair...You don't look closely at her. You can't... People will assume that Sam Goody is a charitable company for employing the handicapped."5 The name of the music store places the anecdote in a realistic setting. We recognize Sam Goody and since we are directly addressed-we are the "you," we are the main character-the views expressed in "Happy Pills" are projected as our views. When Poirier writes, "You don't look closely at her. You can't," it is the reader directly who observes this need to look away from disability. Also, the reader views Sam Goody as a "charitable company." This implies that employing the disabled is an act of charity rather than a person working a job like anyone else. "In a cab ride, 'you' think of what to say to the driver. "Tell him about the long-haired kid outside a T station in Boston, blasting White Snake on a boom box, playing air-guitar with a fucked-up arm. And speaking of fucked up arms: that beggar kid in the bus station in Quito."6 The excerpts from these short stories are from nondisabled perspectives. Lennard J. Davis describes the conflict that arises when a character in a work of literature is disabled. He writes, "The disabled character is never of importance to himself or herself. Rather, the character is placed in the narrative 'for' the nondisabled characters-to help them develop sympathy, empathy, or as a counterbalance to some issue in the life of the 'normal' character."7 In "Happy Pills," the disabled characters "counterbalance" the narrator's tension with his wife who has chosen to abort a deformed fetus. Regardless of the 'normal' narrator's life issues, the words "fucked up arms" are offensive for a disabled reader. For an amputee, these words pierce. It would not be as offensive if I had a language with which to describe this text. If I could name, discuss, and talk about the text, using words to address the discrimination, then I may even appreciate it. "The notion of giving something a name is the vastest generative idea that ever was conceived," writes Susanne K. Langer.8 By naming, we mentally classify and sort or, as my Jewish colleague says, we can begin to think, "This person is this type of person who thinks these things." Whether the thoughts are racist, sexist, or discrimination against disability, by naming those thoughts we generate an idea of the person or text. Ann Berthoff describes the process of naming when she writes, "our instruments are the names by which we differentiate; with those differentiations, those sortings, we weave the fabric of discourse."9 Without coming to a consensus that extends beyond the arena of disabled individuals and disability studies scholars, we allow for a void in public discourse of disability. When researching the word for discrimination against disability, a colleague told me the word already exists. How did she know the word? One of her friends, a disabled female, used ableist to refer to a person who privileged the able-body over the disabled body. Paul K. Longmore uses this word and has given the acronym U.S.A. an alternative meaning-the United States of Ableists. Disability studies texts use the word ableist to mean a variety of different things from society's negative views about disability to discrimination against the disabled. Davis likens ableism to "better known terms like racism or sexism."10 The word ableist has a substantial history in disability studies. However, one quick search via the online edition of the Oxford English Dictionary turns up zero entries for ableist. The word is not in Merriam-Webster or Cambridge's dictionary. If ableist has been adopted by the disabled, and scholars in the field of disability studies, but it has not been adopted by dictionaries, what does this say about the public consciousness of the word ableist? How are we to become empowered by a word that has no public awareness? As cited, the word ableist is used by people encountering its implications or by people in its field of study. If ableist is not recognized by the general public, what does that say about our awareness of discrimination against disability? When I surveyed my non-disabled colleagues and friends, not only did they not know the word ableist, but when I said the word aloud, they could not infer its meaning. What is ableist? Would it not make sense to be an ableist if the word means a person who prefers able-bodiedness over disability? No one wants to be disabled. Perhaps this is why non-disabled people become uncomfortable discussing disability. Rosemary Garland Thomson discusses how we are both "obsessed with and intensely conflicted about the disabled body. We fear, deify, disavow, avoid, abstract, revere, conceal, and reconstruct disability..."11 There is an eerie feeling of It-Could-Happen-To-You that foreshadows a conversation on disability between an able-bodied person and a disabled person. It is easy enough for an able-bodied person to dismiss concerns about addressing the lack of language in disability discourse. Their dismissal may reflect an underlying fear of one-day joining America's largest minority. Now is the time to look beyond our fears and embrace a discourse long overlooked. We need words for discrimination against disability. We need them yesterday, today, and tomorrow. Without a publicly acknowledged word for discrimination against disability, people will continue practicing this prejudice without being named, without consequence. The visiting professor will continue to use words such as "malformed," "deficient," and "incapacitated." The guitarist will continue to discriminate and receive public approval rather than disapproval. Characters in contemporary literature will slander disabled characters. Perhaps these incidents will continue regardless of whether or not a name for discrimination exists. At the very least, naming discrimination against the disabled and placing that name in the public consciousness will begin to hold individuals accountable for prejudiced beliefs while giving a voice to those who endure the consequence of that prejudice. JILLIAN WEISE is the Fred Chappell Fellow at the University of North Carolina at Greensboro. Her creative work appears in The Atlantic Monthly, Chelsea, Puerto del Sol, Salt Hill, and others. She is the recipient of the Academy of American Poets John MacKay Shaw award. Correspondence regarding this manuscript should be sent to Jillian Weise, 1013 A7 North Elm Street, Greensboro NC 27401, (336) 209-1259, weisej@bellsouth.net, www.jillianweise.freeservers.com. The Difficulty with Deafness Discourse and Disability Culture* Tanis Doe Royal Roads University and University of Victoria. Canada Abstract: This paper addresses why the Deaf Culture stance is to distance itself from disability and how this divides rather than unifies communities in common. From the perspective of a member of both the Deaf World and Disability Culture, current discourses are considered and presented for discussion. Keywords: Deaf, Disability, Culture My Standing (and Sitting) in the DEAF-WORLD Writing about this topic is both personally and politically risky for me. There are some potentially negative consequences of writing about Deaf culture and its relationship, however tenuous, to disability culture. By doing this I transgress against the dogma of Deaf Culture by questioning basic tenets. If Deaf Culture is as firm as its proponents say it is, it will withstand criticism. All worthwhile concepts deserve interrogation. I want scholars of disability studies to understand the complications and the lack of resolution in the murky issues. Let me start by positioning myself. Sometimes this is called self-locating. I am a marginal member of the Deaf community by virtue of the fact that I can speak and was not born deaf. But I am an honored member because I have a Deaf child and have raised her within Deaf schools and the Deaf community. I am also respected for my teaching and community activism having been on the Canadian Association of the Deaf Board of Directors and worked for them in various capacities. I am marginal because I sit. I use a wheelchair (Deaf people are not disabled, See Moore and Levitan, 1993). This paper will deconstruct some of the difficulties of Deaf culture from the perspective of Disability culture (with a capital D). My obvious use of a wheelchair is a visible signifier that I cannot be Deaf (or at least should have the dignity not to claim so). I arrived (in my wheelchair) at a table where the interpreters were positioned at an international conference in Washington, D. C. once and was told that this seating (the table) was for "the Deaf." (emphasis mine) I signed. "Like me." I was given a look of curious doubt and suspicion and then Dr. Yerker Andersen recognized me and I was allowed to stay. He is the former president of the World Federation of the Deaf and professor at Gallaudet University. He also knows me. His acceptance of my claim to the seat, to Deafness, was sufficient. But Dr. Andersen is rarely at the events I attend and I remain generally un-accepted. From this position of marginality I have a unique position of being able to live the discrimination of being disabled (socially constructed and physically impaired) in the DEAF-WORLD as well as being a part and party to it (Lane, Hoffmeister, and Ben Bahan, 1996). For newcomers to this DEAF-WORLD, let me explain some of the language being used. When someone cannot hear there are various terms used by the public and medical professionals to signify that state. Hard of hearing, hearing impaired, late deafened, deaf and sometimes deaf-blind (although there is a true marginality in that condition as well). Being Deaf-Blind is a state of liminality that throws one out of the DEAF living room and into the Deaf but Blind too corridor. The use of the capital "D" Deaf does not describe the condition of not being able to hear. It describes a membership in a community of choice. That is you self-identify as being Deaf by using sign language and joining with Deaf friends and sharing Deaf values. Being Deaf is far less about audiological ability to hear pure tones and more about your ability to be culturally appropriate in the presence of other Deaf people (Padden and Humphries, 1988). Deaf culture is considered a high context culture; that is one in which communication requires a great deal of insider knowledge. The non-informed person, even with sign language skills, will have a hard time following a conversation without a sense of the topic and the participants. Deaf Culture has been compared to Israeli Culture in how it sees time and how rules of interaction are adhered to (Mindess, 1999). Similarly, it has been contrasted against the dominant hearing (white non-disabled) American culture because Deaf culture is direct and explicit and hearing culture tends to be vague and implicit (Mindess, 1999). The concept of a Deaf culture is essential to understand if we are to understand why Deaf people do not want to be considered disabled. And then I will try to explore some difficulties in this argument based on my own experience with Disability Culture. As Cheryl Marie Wade eloquently has written, there is a Disability Culture and it is as real and as much a minority community as Deaf culture. But for Deaf people disability is not this. They see disability, in lower case, as a deficit that nondisabled, hearing people created to oppress (Lane, 1992, 1995). In his recent book on disability history, Paul Longmore identifies the problem that Deaf history scholars have constructed. "Finally and distressingly, to counter prejudice against Deaf people, Lane stigmatizes people with other disabilities. A minority model fits Deaf people; the medical model applies to other handicapped people. In fact a minority model that defines "disability" as primarily a socially constructed and stigmatized identity and that Lane so convincingly applies to the history of Deaf people also best explains the modern experience of blind people, physically handicapped people, and even most mentally retarded people" (2003:44). Why Deaf People Oppress and Marginalize Disabled People I have come to believe three contributing factors about this difficulty. One, Deaf people are raised by hearing people, put in schools run by hearing people (mostly) and live (mostly) in a society dominated by hearing values. Because of this Deaf culture has acquired, through schools and the media, most of the same negative stereotypes and understandings of what disability means. And to Deaf people, it is NOT them. They are NOT that. Not crippled, not blind, not crazy, not sick. Disability is "othered" to the extreme, at least in part because of the negative stigma it would attach to otherwise "less" oppressed Deaf people. And this is often true. In the lower case world of impairment people who do not hear are usually not the same people who use wheelchairs or canes or who have learning disabilities. Probably at least 65% of people with disabilities are not Deaf. But there is nothing special about being deaf that prevents you from having a disability and certainly nothing magic about having a disability that prevents you from being deaf. But being deaf does not equal being Deaf. Corker has argued that some Deaf cultural positions are devaluing disability in part because hearing values which have feared disability have been transmitted and so Deaf people do not want the label of disabled anymore than hearing people want it. I find this to be a convincing argument. Deaf people are as much a party to the social construction of what disability is as are hearing non-disabled people. I have seen it at Schools for the Deaf, at Deaf events and in relationships: Hearing impaired people, and particularly deafened people, are often trapped between different discourses of tragedy from which there is no escape and from which they cannot develop alternative discourses because of the marginalizing effects of negative value judgments. In a sense, then Lane selects particular discourses on deafness and disability which are not directly comparable. In doing so he successfully emphasizes his main premise that Deaf people are not disabled by drawing upon the disablist discourses; he thus justifies Deaf people's claim to the right to coexist as a minority group (1998:63). Corker, by the way, was deaf, could sign, but also talked and was positioned in a marginal status to both hearing and deaf communities in Britain. She, like I, risked her social status by arguing against the dominant Deaf discourses. She was willing to name ableism (she called it disablist) when she saw it. Secondly, to be Deaf you must sign, respect Deaf heritage, embrace Deaf values and associate primarily with Deaf people. It helps if you do not speak and when you have Deaf children and/or parents (Evans and Falk, 1986). This is important because to really understand the Deaf perspective you must be a signer, a fluent one, and you must be immersed in history and cultural knowledge. For Deaf people, this is not about disability at all, it is about language and values. Thirdly and perhaps most importantly, Deaf people do not see being deaf or Deaf as a stigma. They are proud of their culture and do not want it to be "contaminated" by the enormous stigma associated with lower case disability and impairment. As a movement they have made some great gains and do not want to lose this precious progress. This may seem like I am simplifying but in fact I am complicating. Deafness as Culture does not carry with it the stigma that Deafness as disability does (or could). Many Deaf people, at the grassroots and at the academic levels, really believe that hearing people (the world in general) are mistaken by seeing being Deaf as a limitation (or disability). Disturbing Differences of Discourse There is significant difficulty with this discourse that creates a serious rift between and among communities. I am worried that my Deaf colleagues and my daughter who is also Deaf, are being misled by hearing people about the way they are perceived as a Culture and as a population with a deficit. My daughter is seen as limited when she goes to the store or even gets on the bus. Not because she CAN sign but because she does NOT speak. Deaf people, generally, do not get Disability (capitalized on purpose). As a Deaf person with a disability (several actually) I claim my capital D Disability Culture status with equal pride and celebration as my Deaf status. However at disability events I am far more likely to have an interpreter provided, and to have my Deaf status recognized (maybe not understood) than have accessibility for my disability or Disability at a Deaf event. The Deaf community is at least partly built on an ableist foundation that says, "we are not them" and "they are not us". But this divides, unnaturally, groups of people by a status that is determined medically or legally and not culturally or individually by choice. It has caused numerous Deaf people to be marginalized from their own group- other Deaf people- on the basis of access and acceptance. Maybe some deaf (who cannot hear but are not part of Deaf culture) people do not mind how the Deaf feel about disability because for them deafness is disabling and since they are not part of the Deaf culture these arguments do not affect them directly. Certainly I know hard of hearing people who cannot be bothered with arguing about or with Deaf people. But these issues do affect me. They affect me as a person, as a mother, as an advocate and as a teacher. How can I sit in a wheelchair and teach, in sign language, Deaf students about instructing sign language to hearing people? I am out of place, I do not belong. I am mis-fit. I am mis-constructed and mistaken. How can I as a Deaf person (with a Deaf daughter) teach a Disability Studies class when Deaf culture refuses to associate itself with the literature and discourse of disability/Disability? I sometimes wonder if the Deaf leadership and membership of Deaf Culture have taken the time to read what Disabled people have been saying about Disability. Because what we are saying about Disability Culture fits in nicely with what many radical Deaf Culture proponents say. But the dialogue is missing. Disability, in its lower and upper case forms, is LIKE deafness. It can exist on the biological plane and be physically a problem. It can be primarily an impairment or it can be primarily an identity. We seek human rights, sometimes called civil rights, as people who are citizens of nations. We are not willing to pretend to be non-disabled to get a job, go to school, have children or be on TV. We, d/Disabled people, want very much what people who argue for Deaf Culture want - status as a minority rather than status as sick, needy, dependent, and disordered. Culturally Deaf people have struggled with not wanting to be categorized as disabled. Not struggled among each other, but against the huge special education and rehabilitation industry that puts them squarely in the category of disabled. Society, too, is guilty of considering deafness (not Deafness) to be an impairment. There are many people who acquire hearing problems in life after age 30 who agree that it is an impairment and seek out solutions. The Deaf community has little argument with them because they are really hearing people who cannot hear rather than Deaf people after all. There are double standards for the valued members of DEAF-WORLD and for those who just became deaf: An embarrassment for the medical model of cultural deafness heretoforeward that this "pathology" had no medical treatment. With cochlear implants, however, the medical specialty of otology has been expanding its traditional clientele beyond adventitiously deafened hearing people who seek treatment, for whom an infirmity model is appropriate, to include members of the Deaf community, for whom it is not (Lane, 1992:206). The main concern is with hearing parents, and hearing professionals (usually doctors and audiologists) who do not want deaf children to become Deaf. They want their deaf children to be as close to hearing (and Hearing) as possible. In order to approach the fixing of deaf children through current cultural and social norms it must be deemed a tragic disability and severely impairing condition. If not why would governments and medical organizations pay so much money for implants, research, interventions, treatments, and hearing aids? Deaf people who use sign language argue for a minority status. This is in part the result of trying to distance Deaf identity from a negative deficit model. But it is also much like a white Hispanic person saying, 'I am not a person of colour' (because he is not) even if he still fits some of the roles of a person from a minority background for language reasons. Women have had to realize that they cannot always distance themselves from their biological sex because it is part of what interacts with the world and co-creates gender but also has medical implications (such as issues of cervical and breast cancer). The linguistic minority status that Deaf people and the DEAF-WORLD (This is another way of writing what is signed in ASL) want will not come with the same benefits as the label of disability because in North America, there is not a particularly good history of how linguistic minorities are treated. There are few if any entrenched rights and the social structures in general push for unilingual assimilation (Speak English you are in the US! or Speak French you are in Quebec!). But the formation of a positive identity as Deaf - one that is free from the negative affiliation with disability, is the first step in resisting oppression (Davis, 2002:10). The next step after having established group solidarity, is when people "are comfortable about self-examining, finding diversity within the group and struggling to redefine the identity in somewhat more nuanced and complex ways" (Davis, 2002:11). Some Deaf academics, who study Deaf Culture, have been able to look around and recognize that some groups were not at the table, and that some groups were dominating, and that some inequality existed in the purported Nirvana that was/is DEAF-WORLD (See for example Sheridan, 2001). If culturally Deaf people can realize that they can be little 'd' deaf (biologically) for the purposes of educational and vocational benefits, but capital D Deaf for social purposes they can avoid the inherent conflict. Many people who are NOT disabled biologically by hearing loss want to identify as part of the Deaf community. Interpreters, hearing children of Deaf parents and people who work directly with or are partners of Deaf people. There are also some small 'd' deaf people who physically qualify as being disabled but who do not claim their cultural Deafness as an identity (Glickman, 1986). Clearly there are both little 'd' deaf people who feel their hearing loss does need to be fixed and is "a disability" and capital 'D' Deaf people who are quite satisfied with their lives and do not want to be fixed. But it is not useful to pretend, or to argue, that BOTH do not co-exist. It is important for the Deaf academic position to be fortified by theory and epistemology that recognizes our social and our biological existence without denying the importance of political or cultural stances. A socio-political model of disability, also seen as a civil rights approach, looks at disability as the consequence of how society is organized rather than biological experiences of difference. "This approach is based on the premise that disability is not a deviation or an anomaly, but that persons with disabilities are an inevitable part of the population" (Roeher Institute, 1996:17). One of my favorite arguments is about the Miss Deaf Pageants. In Canada, Miss Deaf Canada was discontinued when the Canadian Cultural Society of the Deaf and other Deaf organizations agreed that it was sexist and outdated to parade Deaf women around in the name of "culture". My argument with the leaders of the pageants who claimed that this was a Deaf Cultural opportunity for leadership and recognition for Deaf women, was that this was no more Deaf Culture than breakfast. Miss Deaf Canada is directly lifted from Miss (hearing) Canada and all other such pageants. The only thing Deaf about it were the contestants but it certainly did not support or reinforce anything Deaf. It supported a sexist image of what women (hearing or deaf) should look like, act like, walk like and sign like. Deaf people are somewhat snobbish when it comes to sign; like hearing people who value speech, Deaf people value good signing. But in the U.S. there is still an event that parades Deaf women around for the title of Miss Deaf USA. I have even seen it argued that it is MORE necessary now that a "deaf" (lowercase) woman has won Miss America. Separatism lives, but they are not supporting Deaf culture in doing this, they are supporting patriarchy and sexism. So one of my favorite arguments is an example of ho