Review of Disability Studies: An International Journal
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My first introduction to the Disability Rights Movement came from my mentor in Berkeley, Susan O'Hara, who somehow still manages to live there. In days long past, Susan was a history teacher at a Catholic school in Illinois. Her sister came out to Berkeley in the 1970s and brought back tales of the amazing electric wheelchairs that the wild Californians were using. When Susan arrived at Berkeley, her "dorm" was a ward at the University hospital. Expecting to be greeted by a bunch of sick people, instead she was greeted with a paper cup of Scotch. After that, the story about "all the fun they had" grows quite vague. When I arrived at UC Berkeley, Susan was the Director of the Disabled Student's Program. She formed a student advisory board. I am sure the University administration, to have approved such a measure, had images of the lot of us parked around the table spilling cups of tea (those darn blind students) and discussing the joys of student support services. Instead, the group became a war band aimed at people who rode their bicycles on campus. People who rode bicycles on campus at high speed or parked them along handrails were endangering the lives of the blind, deaf, mobile-y slow and distracted, and we vowed to bring them all down. We posted flyers. We wrote letters to the editor. We met with the Chancellor. We cheered when the Vice-Chancellor nearly incurred a head injury after being hit by a bicycle on campus. We smeared Vaseline on the empty seats of unsuspecting cyclists. We even spent our lunch hours actually counting the number of bicycles that passed by Dwinelle Hall for a week and submitted a report to the Campus Police. My point is not to trash people who ride bicycles, but to say that somehow an advisory group turned into an advocacy group under Susan's tutelage. She didn't just nod her head and say, "Are you being served?" She told us her stories. She encouraged us to address things that we saw as wrong. And we thrived under her example. Susan also introduced me to the Disability Rag. The first issue that I read had an article by Rob Kocur called, "The Thorn In Our Side" (December, 1995), in which the author takes the perspective of a Red Neck who offers, among other priceless observations, a "final solution" for getting rid of that "mutant army of welfare riffraff". Among Kocur's suggestions are to send everyone with a disability to Montana, where they could "breed to their heart's content with each other" and allow paying visitors to "intermingle with these special people." I still can't read through the article without laughing until I cry. But what I recognized when I first read it was that there are people who really do think like that. Many people regard people with disabilities as troublemakers who want more than they deserve and who are best kept with their own kind. Realizing that made me understand how far people with disabilities have come, and what a long, long way we have to go. I had another mentor at Berkeley named Sandy Muir. Sandy is very nice, despite being a Republican. Sandy taught Political Science and he also taught me that I should expect normal things from myself despite the fact that I am normally-challenged. I remember when I went to Sandy to ask his advice about which major I should choose for my undergraduate degree. "I am not sure if I want to be an elementary school teacher, a lawyer, a journalist, an English Professor, or a genetic counselor," I moaned. "Well," said Sandy, "I think two of the best majors that will prepare you for Law School or just about anything are History and English. You would like the History program here because all of the students are required to write an undergraduate Thesis and none of the other majors require that." Besides the fact that I have Sandy to thank for helping me to choose English as my major, he also constantly steered me towards thinking of personal success as an option defined both me and by my possibilities. He said that I could be a "big fish in a small pond" or a "small fish in a big pond" but that my choices were mine to make. My choice brought me to Hawaii and to another mentor in David Pfeiffer. When I took a job with the Center on Disability Studies (CDS) I heard stories about David. They were very conflicting. He was the mythic editor of the Disability Studies Quarterly. He was a sweet old guy who was nice to everybody. He was the blaster of often enraged and caustic emails sent to the CDS list-serve in reaction to things like the description of anyone with a disability as "inspirational". I often found myself turning to David when I needed a reality check or advice about negotiating life among the Normals. Because we shared the experience of having a disability, somehow my concerns, large or small, were safe with David. I worked with him on his plans to start a new journal and to bring a disability pride library to the University of Hawaii. I was looking forward to learning so much under his tutelage. About a year ago, David and Steve Brown and Lillian Gonzales Brown had lunch at my apartment. Lillian was quite upset over an incident at a recent Disability and Diversity Studies Institute where she had made a soapbox speech about people without disabilities using the accessible bathroom stall. It turns out the person who had incited her speech told Lillian after the fact that she had a bad back. Lillian said that a number of people had told her the speech was "out of line" and "lacked Aloha" and Lillian was tending towards believing them. David listened very carefully and very quietly and then suddenly he roared, with the hint of Texas in his voice that still lingered, "BULL-SHIT." Those words still ring in my ear every time I find myself starting to believe that somehow my expectations of fairness and equality are wrong. When David died, I thought, "Oh no, who will edit the new journal? Who will bring the library to Hawaii, who will push the University for better access, who will nail people when they say goofy, stupid things? " - I am sure David would have said, "You will." References Kocur, R. (November - December, 1995). The thorn in our side. The Disability Rag and Resource, 23-28. Linton, S. (1998). Claiming disability: Knowledge and identity. NY: New York University Press. DR. MEGAN A. CONWAY is Assistant Professor of Disability Studies at the University of Hawaii at Manoa. She is also Associate Editor of the Review of Disability Studies. Her interests include disability rights policy, postsecondary education, and the integration of disability studies into the field of education. BIBLIOGRAPHIES AND RESOURCES Still Celebrating Disability Culture: A Peek at the Annotated, Disability Culture Bibliography Steven E. Brown, Ph.D. Center on Disability Studies University of Hawaii at Manoa
I've been compiling bibliographies for as long as I can remember. When I first became interested in disability culture I knew I'd want to create a bibliography. Over the years I've developed two different bibliographies. One is a non-annotated version. It currently contains 2529 citations entered into more than twenty computer database categories. I published an early version of this bibliography in Investigating a Culture of Disability. As the non-annotated bibliography grew and publication did not seem imminent, I started an annotated bibliography. I've self-published two versions, both called, A Celebration of Diversity: An Annotated Bibliography about Disability Culture. I've been adding to the 2nd edition, since its 2002 publication. While we prepared this journal issue, I offered to share bibliography entries that have not been previously published. All are included below, excluding the ones in the review section of this issue. Not all entries are from new publications. The reason for this is I've added entries as I've read or reviewed them. This bibliography therefore includes both recently published and released materials as well as classics.
Brown, Steven E., A Celebration of Diversity: An Annotated Bibliography about Disability Culture (Las Cruces, NM: Institute on Disability Culture, 2000). Brown, Steven E., A Celebration of Diversity: An Annotated Bibliography about Disability Culture, 2nd ed. (Las Cruces, NM: Institute on Disability Culture, 2002). Brown, Steven E., Investigating a Culture Of Disability: Final Report (Las Cruces, NM: Institute on Disability Culture, 1994). Update To An Annotated Bibliography About Disability Culture I. Books: Non-Fiction Barnes, Colin and Geof Mercer, Disability (Cambridge, UK, Polity, 2003). An excellent addition to the growing literature. This gives a good overview of the development of the disability rights movement, particularly in the U.S. and U.K. Would be a good choice for an introductory graduate course, especially for students who have not studied disability issues previously. Bogdan, Robert, Freak Show: Presenting Human Oddities for Amusement and Profit (Chicago, U. of Chicago, 1988). A detailed account of freak shows from the mid-nineteenth to mid-twentieth centuries. Who was a freak, why, and how they were presented. All placed in the context of the late twentieth century disability rights movement. 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). In this collection, many previously published essays (and some new ones) explore this journey through autobiographical essays, scholarly analysis, profiles, and critiques of how disability is perceived and impacted in all aspects life Burch, Susan, Signs of Resistance: American Deaf Cultural History, 1900 to World War II (New York, NYU, 2003). Another excellent history in the series NYU Press is putting out. Burch does an admirable job of showing that cultural Deafness continued during a period when oralism seemed dominant. One of the best parts of the books is Burch's ability to place Deafness issues in the context of overall American social issues. Because of that I wish she'd included more about the oppression of other languages during the same time that oralism seemed to be dominating ASL. Darnell, Lila Ridings, The Ghost Behind the Wheelchair (1stBooks, 2002). This book is billed as the first maternal account of living with a child who's had a Spinal Cord Injury (SCI). The author says she wrote the book because she could find no guides for parents in similar situations when her son became injured. The attraction of this book is that it takes the reader into the panicky, crazy situation of learning a child has been injured and may or may not survive, and if they do survive they will be a high level quadriplegic. It's a mile-a-minute ride in discovering what this kind of life is like. The book is not as good at describing the years following rehabilitation, but that's not the primary focus. Davis, Lennard J., Bending Over Backwards: Disability, Dismodernism, and Other Difficult Positions (New York: NYU, 2002). Davis, who's a literary critic, does something very few of us do-he moves all of our positions forward in his discussions about disability identity, and how critical analysis of writings from novels to Supreme Court decisions impact those of us with disabilities. Fleischer, Doris Zames and Frieda Zames, The Disability Rights Movement: From Charity to Confrontation (Philadelphia: Temple, 2001). Two sisters, one of whom had polio as a child, throw themselves into the daunting task of documenting the disability rights movement. This is an ambitious, frustrating, and fascinating book. The authors, who had roles in many of the activities they describe, attempt an overview of all aspects of the disability rights movement, from the beginnings of rehabilitation to parent groups in the mid-20th century to the Americans with Disabilities Act and beyond. While the overview is excellent, it's also a clarion call to future researchers to analyze each section of each chapter and move forward to develop books about each of these subjects. It's hard to be too critical of this attempt to place the disability rights movement in the context of our times, but there are problems. One is that the sisters are from the New York and their Eastern bias clearly shows. Not only in their subject matter and their knowledge of it, which is often more detailed than for other parts of the country, but also in their descriptions of the rest of the country, especially California. Perhaps because I know that part of our history better than I do eastern events I caught lots of mistakes in the descriptions of the Berkeley CIL's history and in the story of Ed Roberts. There are some gaps in details, which better editing might have removed. For example, at one point, the authors announce the first CIL anywhere developed in 1971, but nowhere do they say where or what this CIL is. More frustrating, however, than editorial or factual mistakes is the tendency to take first-person accounts without any critical analysis. To use Ed as an example, comments he made in his mid-50s might differ from those of his early twenties and both are examples not only of factual recounting, but also of public relations, at which Ed excelled. A good biography of Ed and a good history of CIL would dig deeper than the authors did in this book. Exposing our inconsistencies, foibles, and conflicts will only demonstrate that we are like every other movement, not any better or worse. Having said that, perhaps the Eastern history is less accurate than it appears to me, because I don't know it. Since I don't have the background to analyze their descriptions critically I found the events of the eastern part of the country fascinating as is much of the rest of this book. I know of no other book like this that has tried to summarize legislation, education, transportation, veterans issues, independent living, assistive technology, street actions, and much more. While I found gaps, mistakes, and omissions, this is by far the best start at an overview of U.S. disability rights history that we have had. The book belongs in every disability studies library and in every disability rights organization's toolkit of information. Gartner, Alan and Tom Joe, eds., Images of the Disabled, Disabling Images (New York: Praeger, 1987). I finally got around to reading this collection, which I've been hearing about for years. It's an interesting combination of essays about media, services, technology, and politics, from Harlan Hahn and Paul Longmore to Robert Funk and the editors. All the essays contain historical value, but the ones I found most pertinent still were about media and literature. Politics has changed, technology has advanced; attitudes seem to have moved forward much more slowly and this is reflected in discussions about literature and stereotypes. Gottlieb, Daniel H., Voices of Conflict: Voices of Healing: A Collection of Articles By a Much-Loved Philadelphia Inquirer Columnist (San Jose, iUniverse, 2001). A practicing psychologist who became a quadriplegic and continued to practice, write, and host a radio show. These columns of gentle advice hold inspiration for all of us. Johnson, Mary, Make Them Go Away: Clint Eastwood, Christopher Reeve and The Case Against Disability Rights (Louisville, KY: Advocado, 2003). An excellent book, that goes into great detail about why people say they mean no harm to "the handicapped," yet go ahead and discriminate anyway. Johnson presents cogent arguments and backs them up with many facts. Indeed, my biggest concern about this book is that people will only focus on the first part, where the case against disability rights is made; not the second where Johnson, long time editor of the groundbreaking disability rights magazine, the Ragged Edge, makes the case for disability rights. Longmore, Paul K., Why I Burned My Book and Other Essays on Disability (Philadelphia: Temple, 2003). This is the book I wish had been available when I started reading about disability history in the United States. Longmore does a wonderful job of weaving personal experience and academic investigation in elegant prose. From his first essay, an introduction to the first edition of Disability Rights Advocates' Disability Watch, in which Longmore explains why there is a need to observe-and change-disability policy to his culminating essay, why he did burn his book, there is a wealth of U.S. social history, disability history, and plain good history. His groundbreaking essays on Randolph Bourne and the League of the Physically Handicapped of the 1930s are here as well as other influential writings. Longmore, unlike most historians, recognizes how the past-and present-affect not only him, but his peers-and maybe, most importantly does something about it, not on the streets necessarily, but in the academy. This book belongs in every disability studies program in the country, but more crucially, it belongs in every library. Read it! Lusseyran, Jacques, And There was Light: Autobiography of Jacques Lusseyran, Blind Hero of the French Resistance (New York: Parabola, 1998, first published in 1963). An autobiography with a difference: a blind man who can see, literally-maybe? and was indeed a hero in the French Resistance. How he dealt with blindness and life in World War II. Medoff, Mark, Children of a Lesser God (New York: DRAMATISTS PLAY SERVICE, 1980). Like many people, I saw the movie when it first came out. Years later I had an opportunity to meet Mark Medoff and to become friendly with him. After he agreed to write testimonials for a couple of my manuscripts I decided I should read the play, (that I had never seen) which I had heard differed greatly from the movie. I got a copy from the library recently and sat down with it. An eye-opening experience. A great play, especially considering its publication date. Medoff evokes paternalism, rebellion, stubbornness, pride, helplessness, culture, competition and cooperation, among other emotions. If I ever get a chance to see the play performed I will. Priestley, Mark, Disability: A Life Course Approach (Cambridge, UK: Polity, 2003). Another excellent contribution from the folks at the Centre for Disability Studies at the University of Leeds. In this book, Priestly discusses many familiar issues, but treats them from a new perspective, the life course. In doing so, he analyzes, for example, how eugenics has had an impact from conception to death, and how recreation affects people from their earliest years to their last ones. A good introduction to another way of thinking about disability studies and disability issues. Stiker, Henri-Jacques, A History of Disability (Ann Arbor, Michigan, 1999, originally published in French in 1982). Stiker has become well-known in the U. S. recently. In this book he uses a variety of diverse disciplines to come to conclusions about disability from ancient times to the present. Many of his arguments were revolutionary when first published, but are less so now, as disability rights has progressed and as other scholars also use a variety of disciplines to analyze the idea of disability. Titchkosky, Tanya, Disability, Self, and Society (Toronto, University of Toronto, 2003). When I began this book, I felt unsure about Titchkosky's goals. By the time I finished I was ready to recommend it to future graduate seminars. Titchkosky has done something new, at least to me. She's analyzed, in detail, aspects of her daily life, living with disability, and interacting with the world, and explored how her experiences living with her own dyslexia, her partner's blindness, and perceptions about -and by-both of them, have the ability to influence everyone's internal and external environments. For example, in her conclusion, she takes the horrid unemployment figures for people with disabilities, that we have all known about for years, and analyzes how these figures can be used to prove multiple paradigms: the need for disability rights; the need for rehabilitation; the need to have social programs; the need to eliminate social programs, and so on. She then suggests that we explore why these figures fit multiple paradigms and learn from them. Most importantly, she explores how disability can teach all of us more about ourselves and our world, no matter how much we think we already know. II. Books: Fiction Elton, Ben, Gridlock (London: Time Warner, 1991). Elton is a humorist with kind of a preachy message in this book about the horrendous effects of cars on all of our lives. What gets it into this bibliography is that at least two of the major characters in the book have disabilities and Elton's portrayals of us are pretty funny indeed, even though to an American audience some of his words will feel most outdated-and maybe even, politically incorrect. III. Books: Poetry Brown, Steven E., Love Into Forever: A Tribute to Martyrs, Heroes, Friends, and Colleagues (Las Cruces, NM: Institute on Disability Culture, 2002). A tribute to colleagues and friends who have passed on or who we thought would no longer be here. IV. Articles: Journals, Magazines And Encyclopedias Blaser, Art, "Answers Ten Objections to Disability Identity Politics," Mouth: The Voice of the Disability Nation, XIII (1), (May-June 2002), 18-21. Why disability identity politics developed, why disability identity politics are still needed, and responses to some objections raised about them. Bowers, Rick, "Celebrating Disability Through the Arts: Jesuit Brother Discovers Life's Mission in the Theater," In Motion, 12 (2) (March/April 2002), 12-13, 15, -16. The story of the founder of The National Theatre Workshop of the Handicapped, Jesuit Brother Rick Curry, who founded the organization in the late 1970s in New York City. Byzek, Josie, "Dianne Piastro," New Mobility: Life on Wheels, 13 (102), (March 2002), 45-49, About a woman with MS who has paved the way for columnists with disabilities and opened many other avenues. See also, "Victoria Williams: Coping on the Road," New Mobility: Life on Wheels, 13 (103), (April 2002), 52-53, a profile of the singer who has MS. Dobbs, Jean, "Vic Chesnutt: Raw Revelation," New Mobility: Life on Wheels, 13 (103), (April 2002), 44-51. A profile of the somber singer/songwriter who became a quadriplegic at the age of 18. Drill, Herb, "Art & Ability," New Mobility: Life on Wheels, 14 (122) (November 2003), 20-22. Good review of the Bryn Mawr Rehabilitation Hospital Art Program. Gilmer, Tim, "Teddy Pendergrass: Teddy Bear Returns," New Mobility: Life on Wheels, 13 (103), April 2002, 36-42. An excellent profile of the sensual crooner who became a quadriplegic in 1982 and how he has rebuilt his life. Snow, Kathie, "Kid Renounces Therapies, Survives," Mouth: Voice of the Disability Nation, 12, (6) (March-April 2002), 24-31. How a Mom listened to her son and doesn't regret it one bit. V. Music
These two CDs are the first I know of that look at the human services bureaucracy related to people with disabilities from a humorous perception. Leidy has a penchant for stealing other people's tunes and adding his own, often ingenious, lyrics. I laughed out loud on first hearing some of these songs. Others make you want to cry and still others to shout in anger at the world's injustices. Academic Programs in Disability Studies Steven J. Taylor and Rachael Zubal-Ruggieri Center on Human Policy Syracuse University The following section contains a listing of Disability Studies programs in North American Academic Institutions. The title "Disability Studies" has become popular and is sometimes used to refer to programs in clinical or instructional fields. The programs in this listing meet the following criteria: (1) the sponsoring university offers a four-year undergraduate degree or Master's or doctoral degrees; (2) the programs offer a formal academic program, including a degree, concentration, specialization, minor, major, or certificate in Disability Studies; (3) the programs include disability course work in non-clinical and non-instructional fields (e.g., the Humanities, Social Sciences, Literature, Law, Policy Studies, or the Visual or Performing Arts); and (4) information describing the programs can be found in written form or on a university web site. This listing does not include research or training centers that do not offer formal academic programs. Yüklə 0,98 Mb. Dostları ilə paylaş:
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