Arts and Humanities
Publication Year: 2012
This volume in The SAGE Reference Series on Disability explores the arts and humanities within the lives of people with disabilities. It is one of eight volumes in the cross-disciplinary and issues-based series, which incorporates links from varied fields making up Disability Studies as volumes examine topics central to the lives of individuals with disabilities and their families. With a balance of history, theory, research, and application, specialists set out the findings and implications of research and practice for others whose current or future work involves the care and/or study of those with disabilities, as well as for the disabled themselves. The presentational style (concise and engaging) emphasizes accessibility. Taken individually, each volume sets out the fundamentals of the topic it addresses, accompanied by compiled ...
- Front Matter
- Back Matter
- Subject Index
- Chapter 1: Introduction, Background, and History
- Chapter 2: Current Issues, Controversies, and Solutions
- Chapter 3: Chronology of Critical Events
- Chapter 4: Biographies of Key Contributors in the Field
- Chapter 5: Annotated Data, Statistics, Tables, and Graphs
- Chapter 6: Annotated List of Organizations and Associations
- Chapter 7: Selected Print and Electronic Resources
The SAGE Reference Series on Disability: Key Issues and Future Directions[Page ii]
Series Editor: Gary L. Albrecht
Arts and Humanities, by Brenda Jo Brueggemann
Assistive Technology and Science, by Cathy Bodine
Disability Through the Life Course, by Tamar Heller and Sarah Parker Harris
Education, by Cheryl Hanley-Maxwell and Lana Collet-Klingenberg
Employment and Work, by Susanne M. Bruyère and Linda Barrington
Ethics, Law, and Policy, by Jerome E. Bickenbach
Health and Medicine, by Ross M. Mullner
Rehabilitation Interventions, by Margaret A. Turk and Nancy R. Mudrick
Copyright © 2012 by SAGE Publications, Inc.
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
Printed in the United States of America.
Library of Congress Cataloging-in-Publication Data
Brueggemann, Brenda Jo, 1958–Arts and humanities/Brenda Jo Brueggemann.
p. cm.—(SAGE reference series on disability: key issues and future directions) Includes bibliographical references and index.
ISBN 978-1-4129-8818-6 (cloth)
1. Disability studies. 2. Humanities. 3. People with disabilities and the arts. 4. Sociology of disability. I. Title.
12 13 14 15 16 10 9 8 7 6 5 4 3 2 1
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Series Introduction[Page vii]
The SAGE Reference Series on Disability appears at a time when global attention is being focused on disability at all levels of society. Researchers, service providers, and policymakers are concerned with the prevalence, experience, meanings, and costs of disability because of the growing impact of disability on individuals and their families and subsequent increased demand for services (Banta & de Wit, 2008; Martin et al., 2010; Mont, 2007; Whitaker, 2010). For their part, disabled people and their families are keenly interested in taking a more proactive stance in recognizing and dealing with disability in their lives (Charlton, 1998; Iezzoni & O'Day, 2006). As a result, there is burgeoning literature, heightened Web activity, myriad Internet information and discussion groups, and new policy proposals and programs designed to produce evidence and disseminate information so that people with disabilities may be informed and live more independently (see, for example, the World Institute of Disability Web site at http://www.wid.org, the Center for International Rehabilitation Research Information and Exchange Web site at http://cirrie.buffalo.edu, and the Web portal to caregiver support groups at http://www.caregiver.com/regionalresources/index.htm).
Disability is recognized as a critical medical and social problem in current society, central to the discussions of health care and social welfare policies taking place around the world. The prominence of these disability issues is highlighted by the attention given to them by the most respected national and international organizations. The World Report on Disability (2011), co-sponsored by the World Health Organization (WHO) and the World Bank and based on an analysis of surveys from over 100 countries, estimates that 15% of the world's population (more than 1 billion people) currently experiences disability. This is the best prevalence estimate available today and indicates a marked increase over [Page viii]previous epidemiological calculations. Based on this work, the British medical journal Lancet dedicated an entire issue (November 28, 2009) to disability, focusing attention on the salience of the problem for health care systems worldwide. In addition, the WHO has developed community-based rehabilitation principles and strategies which are applicable to communities of diverse cultures and at all levels of development (WHO, 2010). The World Bank is concerned because of the link between disability and poverty (World Bank, 2004). Disability, in their view, could be a major impediment to economic development, particularly in emerging economies.
Efforts to address the problem of disability also have legal and human rights implications. Being disabled has historically led to discrimination, stigma, and dependency, which diminish an individual's full rights to citizenship and equality (European Disability Forum, 2003). In response to these concerns, the United Nations Convention on the Rights of Persons with Disabilities (2008) and the European Union Disability Strategy embodying the Charter of Fundamental Rights (2000) were passed to affirm that disabled people have the right to acquire and change nationalities, cannot be deprived of their ability to exercise liberty, have freedom of movement, are free to leave any country including their own, are not deprived of the right to enter their own country, and have access to the welfare and benefits afforded to any citizen of their country. As of March 31, 2010, 144 nations—including the United States, China, India, and Russia—had signed the U.N. Convention, and the European Union Disability Strategy had been ratified by all members of the European Community. These international agreements supplement and elaborate disability rights legislation such as the Americans with Disabilities Act of 1990 and its amendments, the U.K. Disability Discrimination Act of 1995, and the Disabled Person's Fundamental Law of Japan, revised in 1993.
In the United States, the Institute of Medicine of the National Academy of Sciences has persistently focused attention on the medical, public health, and social policy aspects of disability in a broad-ranging series of reports: Disability in America (1991), Enabling America (1997), The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs, (2002), The Future of Disability in America (2007), and Improving the Presumptive Disability Decision-Making Process for Veterans (2008). The Centers for Disease Control have a long-standing interest in diabetes and obesity because of their effects on morbidity, mortality, and disability. Current data show that the incidence and prevalence of obesity is rising across all age [Page ix]groups in the United States, that obesity is related to diabetes, which is also on the rise, and that both, taken together, increase the likelihood of experiencing disability (Bleich et al., 2008; Gill et al., 2010). People with diabetes also are likely to have comorbid depression, which increases their chances of functional disability (Egede, 2004).
Depression and other types of mental illness—like anxiety disorders, alcohol and drug dependence, and impulse-control disorders—are more prevalent than previously thought and often result in disability (Kessler & Wang, 2008). The prevalence of mental disorders in the United States is high, with about half of the population meeting criteria (as measured by the Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV) for one more disorders in their lifetimes, and more than one-quarter of the population meeting criteria for a disorder in any single year. The more severe mental disorders are strongly associated with high comorbidity, resulting in disability.
Major American foundations with significant health portfolios have also turned their attention to disability. The Bill and Melinda Gates Foundation has directed considerable resources to eliminate disability-causing parasitic and communicable diseases such as malaria, elephantiasis, and river blindness. These efforts are designed to prevent and control disability-causing conditions in the developing world that inhibit personal independence and economic development. The Robert Wood Johnson Foundation has a long-standing program on self-determination for people with developmental disabilities in the United States aimed at increasing their ability to participate fully in society, and the Hogg Foundation is dedicated to improving mental health awareness and services. Taken in concert, these activities underscore the recognized importance of disability in the present world.Disability Concepts, Models, and Theories
There is an immense literature on disability concepts, models, and theories. An in-depth look at these issues and controversies can be found in the Handbook of Disability Studies (Albrecht, Seelman, & Bury, 2001), in the Encyclopedia of Disability (Albrecht, 2006), and in “The Sociology of Disability: Historical Foundations and Future Directions” (Albrecht, 2010). For the purposes of this reference series, it is useful to know that the World Health Organization, in the International Classification of Functioning, Disability and Health (ICF), defines disability as “an umbrella term for [Page x]impairments, activity limitations or participation restrictions” (WHO, 2001, p. 3). ICF also lists environmental factors that interact with all these constructs. Further, the WHO defines impairments as “problems in body function or structure such as significant deviation or loss;” activity limitations as “difficulties an individual may have in executing activities;” participation as “involvement in a life situation;” and environmental factors as those components of “the physical, social and attitudinal environment in which people live and conduct their lives” (WHO, 2001, p. 10). The U.N. Convention on the Rights of Persons with Disabilities, in turn, defines disability as including “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” In the introduction to the Lancet special issue on disability, Officer and Groce (2009) conclude that “both the ICF and the Convention view disability as the outcome of complex interactions between health conditions and features of an individual's physical, social, and attitudinal environment that hinder their full and effective participation in society” (p. 1795). Hence, disability scholars and activists alike are concerned with breaking down physical, environmental, economic, and social barriers so that disabled people can live independently and participate as fully as possible in society.Types of Disability
Interest in disability by medical practitioners has traditionally been condition specific (such as spinal cord injury or disabilities due to heart disease), reflecting the medical model approach to training and disease taxonomies. Similarly, disabled people and their families are often most concerned about their particular conditions and how best to deal with them. The SAGE Reference Series on Disability recognizes that there are a broad range of disabilities that can be generally conceived of as falling in the categories of physical, mental, intellectual, and sensory disabilities. In practice, disabled persons may have more than one disability and are often difficult to place in one disability category. For instance, a spinal-cord injured individual might experience depression, and a person with multiple sclerosis may simultaneously deal with physical and sensory disabilities. It is also important to note that disabilities are dynamic. People do experience different rates of onset, progression, remission, and [Page xi]even transition from being disabled at one point in time, to not being disabled at another, to being disabled again. Examples of this change in disability status include disability due to bouts of arthritis, Guillain-Barré Syndrome, and postpartum depression.Disability Language
The symbols and language used to represent disability have sparked contentious debates over the years. In the Handbook of Disability Studies (Albrecht, Seelman, & Bury, 2001) and the Encyclopedia of Disability (Albrecht, 2006), authors from different countries were encouraged to use the terms and language of their cultures, but to explain them when necessary. In the present volumes, authors may use “people with disabilities” or “disabled people” to refer to individuals experiencing disability. Scholars in the United States have preferred “people with disabilities” (people-first language), while those in the United Kingdom, Canada, and Australia generally use “disabled people.” In languages other than English, scholars typically use some form of the “disabled people” idiom. The U.S. version emphasizes American exceptionalism and the individual, whereas “disabled people” highlights the group and their minority status or state of being different. In my own writing, I have chosen “disabled people” because it stresses human diversity and variation.
In a recent discussion of this issue, DePoy and Gilson (2010) “suggest that maintaining debate and argument on what language is most correct derails a larger and more profound needed change, that of equalizing resources, valuation, and respect. Moreover, … locating disability ‘with a person’ reifies its embodiment and flies in the very face of the social model that person-first language is purported to espouse…. We have not heard anyone suggest that beauty, kindness, or even unkindness be located after personhood.” While the debate is not likely over, we state why we use the language that we do.Organization of the Series
These issues were important in conceiving of and organizing the SAGE Reference Series on Disability. Instead of developing the series around specific disabilities resulting from Parkinson's disease or bi-polar disorder, or according to the larger categories of physical, mental, intellectual, and [Page xii]sensory disabilities, we decided to concentrate on the major topics that confront anyone interested in or experiencing disability. Thus, the series consists of eight volumes constructed around the following topics:
- Arts and Humanities
- Assistive Technology and Science
- Disability Through the Life Course
- Employment and Work
- Ethics, Law, and Policy
- Health and Medicine
- Rehabilitation Interventions
To provide structure, we chose to use a similar organization for each volume. Therefore, each volume contains the following elements:
- Series Introduction
- About the Author
- About the Series Editor
- Chapter 1. Introduction, Background, and History
- Chapter 2. Current Issues, Controversies, and Solutions
- Chapter 3. Chronology of Critical Events
- Chapter 4. Biographies of Key Contributors in the Field
- Chapter 5. Annotated Data, Statistics, Tables, and Graphs
- Chapter 6. Annotated List of Organizations and Associations
- Chapter 7. Selected Print and Electronic Resources
- Glossary of Key Terms
The eight-volume SAGE Reference Series on Disability targets an audience of undergraduate students and general readers that uses both academic and public libraries. However, the content and depth of the series will also make it attractive to graduate students, researchers, and policymakers. The series has been edited to have a consistent format and accessible style.
[Page xiii]The focus in each volume is on providing lay-friendly overviews of broad issues and guideposts for further research and exploration.
The series is innovative in that it will be published and marketed worldwide, with each volume available in electronic format soon after it appears in print. The print version consists of eight bound volumes. The electronic version is available through the SAGE Reference Online platform, which hosts 200 handbooks and encyclopedias across the social sciences, including the Handbook of Disability Studies and the Encyclopedia of Disability. With access to this platform through college, university, and public libraries, students, the lay public, and scholars can search these interrelated disability and social science sources from their computers or handheld and smart phone devices. The movement to an electronic platform presages the cloud computing revolution coming upon us. Cloud computing “refers to ‘everything’ a user may reach via the Internet, including services, storage, applications and people” (Hoehl & Sieh, 2010). According to Ray Ozzie (2010), recently Microsoft's chief architect, “We're moving toward a world of (1) cloud-based continuous services that connect us all and do our bidding, and (2) appliance-like connected devices enabling us to interact with those cloud-based services.” Literally, information will be available at consumers’ fingertips. Given the ample links to other resources in emerging databases, they can pursue any topic of interest in detail. This resource builds on the massive efforts to make information available to decision makers in real time, such as computerizing health and hospital records so that the diagnosis and treatment of chronic diseases and disabilities can be better managed (Celler, Lovell, & Basilakis, 2003). The SAGE Reference Series on Disability provides Internet and Web site addresses which lead the user into a world of social networks clustered around disability in general and specific conditions and issues. Entering and engaging with social networks revolving around health and disability promises to help individuals make more informed decisions and provide support in times of need (Smith & Christakis, 2008). The SAGE Reference Online platform will also be configured and updated to make it increasingly accessible to disabled people.
The SAGE Reference Series on Disability provides an extensive index for each volume. Through its placement on the SAGE Reference Online platform, the series will be fully searchable and cross-referenced, will allow keyword searching, and will be connected to the Handbook of Disability Studies and the Encyclopedia of Disability.
[Page xiv]The authors of the volumes have taken considerable effort to vet the references, data, and resources for accuracy and credibility. The multiple Web sites for current data, information, government and United Nations documents, research findings, expert recommendations, self-help, discussion groups, and social policy are particularly useful, as they are being continuously updated. Examples of current and forthcoming data are the results and analysis of the findings of the U.S. 2010 Census, the ongoing reports of the Centers for Disease Control on disability, the World Health Organization's World Report on Disability and its updates, the World Bank reports on disability, poverty, and development, and reports from major foundations like Robert Wood Johnson, Bill and Melinda Gates, Ford, and Hogg. In terms of clinical outcomes, the evaluation of cost-effective interventions, management of disability, and programs that work, enormous attention is being given to evidence-based outcomes (Brownson, Fielding, & Maylahn, 2009; Marcus et al., 2006; Wolinsky et al., 2007) and comparative effectiveness research (Etheredge, 2010; Inglehart, 2010). Such data force a re-examination of policymakers’ arguments. For example, there is mounting evidence that demonstrates the beneficial effects of exercise on preventing disability and enhancing function (Marcus et al., 2006). Recent studies also show that some health care reform initiatives may negatively affect disabled people's access to and costs of health care (Burns, Shah, & Smith, 2010). Furthermore, the seemingly inexorable rise in health care spending may not be correlated with desirable health outcomes (Rothberg et al., 2010). In this environment, valid data are the currency of the discussion (Andersen, Lollar, & Meyers, 2000). The authors’ hopes are that this reference series will encourage students and the lay public to base their discussions and decisions on valid outcome data. Such an approach tempers the influence of ideologies surrounding health care and misconceptions about disabled people, their lives, and experiences.
SAGE Publications has made considerable effort to make these volumes accessible to disabled people in the printed book version and in the electronic platform format. In turn, SAGE and other publishers and vendors like Amazon are incorporating greater flexibility in the user interface to improve functionality to a broad range of users, such as disabled people. These efforts are important for disabled people as universities, governments, and health service delivery organizations are moving toward a paperless environment.
In the spirit of informed discussion and transparency, may this reference series encourage people from many different walks of life to become [Page xv]knowledgeable and engaged in the disability world. As a consequence, social policies should become better informed and individuals and families should be able to make better decisions regarding the experience of disability in their lives.Acknowledgments
I would like to recognize the vision of Rolf Janke in developing SAGE Publications’ presence in the disability field, as represented by the Handbook of Disability Studies (2001), the five-volume Encyclopedia of Disability (2006), and now the eight-volume SAGE Reference Series on Disability. These products have helped advance the field and have made critical work accessible to scholars, students, and the general public through books and now the SAGE Reference Online platform. Jim Brace-Thompson at SAGE handled the signing of contracts and kept this complex project coordinated and moving on time. Kevin Hillstrom and Laurie Collier Hillstrom at Northern Lights Writers Group were intrepid in taking the composite pieces of this project and polishing and editing them into a coherent whole that is approachable, consistent in style and form, and rich in content. The authors of the eight volumes—Linda Barrington, Jerome Bickenbach, Cathy Bodine, Brenda Brueggemann, Susanne Bruyère, Lana Collet-Klingenberg, Cheryl Hanley-Maxwell, Sarah Parker Harris, Tamar Heller, Nancy Mudrick, Ross Mullner, and Peggy Turk—are to be commended for their enthusiasm, creativity, and fortitude in delivering high-quality volumes on a tight deadline. I was fortunate to work with such accomplished scholars.
Discussions with Barbara Altman, Colin Barnes, Catherine Barral, Len Barton, Isabelle Baszanger, Peter Blanck, Mary Boulton, David Braddock, Richard Burkhauser, Mike Bury, Ann Caldwell, Lennard Davis, Patrick Devlieger, Ray Fitzpatrick, Lawrence Frey, Carol Gill, Tamar Heller, Gary Kielhofner, Soewarta Kosen, Jo Lebeer, Mitch Loeb, Don Lollar, Paul Longmore, Ros Madden, Maria Martinho, Dennis Mathews, Sophie Mitra, Daniel Mont, Alana Officer, Randall Parker, David Pfeiffer, Jean-François Raveau, James Rimmer, Ed Roberts, Jean-Marie Robine, Joan Rogers, Richard Scotch, Kate Seelman, Tom Shakespeare, Sandor Sipos, Henri-Jacques Stiker, Edna Szymanski, Jutta Traviranus, Bryan Turner, Greg Vanderheiden, Isabelle Ville, Larry Voss, Ann Waldschmidt, and Irving Kenneth Zola over the years contributed to the content, logic, and structure of the series. They also were a wonderful source of suggestions for authors.
[Page xvi]I would also like to acknowledge the hospitality and support of the Belgian Academy of Science and the Arts, the University of Leuven, Nuffield College, the University of Oxford, the Fondation Maison des Sciences de l'Homme, Paris, and the Department of Disability and Human Development at the University of Illinois at Chicago, who provided the time and environments to conceive of and develop the project. While none of these people or institutions is responsible for any deficiencies in the work, they all helped enormously in making it better.ReferencesAlbrecht, G. L. (Ed.). (2006). Encyclopedia of disability (5 vols.). Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/97814129505102010). The sociology of disability: Historical foundations and future directions. In C.Bird, A.Fremont, S.Timmermans, & P.Conrad (Eds.), Handbook of medical sociology ((6th ed., pp. 192–209). Nashville, TN: Vanderbilt University Press.Albrecht, G. L., Seelman, K. D., & Bury, M. (Eds.). (2001). Handbook of disability studies. Thousand Oaks, CA: Sage. http://dx.doi.org/10.4135/97814129762512000). Disability outcomes research: Why this supplement, on this topic, at this time?Archives of Physical Medicine and Rehabilitation, 81, S1–S4., , & (2008). Public health services and cost-effectiveness analysis. Annual Review of Public Health, 29, 383–397. http://dx.doi.org/10.1146/annurev.publhealth.29.020907.090808, & (2008). Why is the developed world obese?Annual Review of Public Health, 29, 273–295. http://dx.doi.org/10.1146/annurev.publhealth.29.020907.090954, , , & (2009). Evidence-based public health: A fundamental concept for public health practice. Annual Review of Public Health, 30, 175–201. http://dx.doi.org/10.1146/annurev.publhealth.031308.100134, , & (2010). Why some disabled adults in Medicaid face large out-of-pocket expenses. Health Affairs, 29, 1517–1522. http://dx.doi.org/10.1377/hlthaff.2009.0147, , & (2003). Using information technology to improve the management of chronic disease. Medical Journal of Australia, 179, 242–246., , & (1998). Nothing about us without us: Disability, oppression and empowerment. Berkeley: University of California Press. http://dx.doi.org/10.1525/california/9780520207950.003.0001(2010) Studying disability: Multiple theories and responses. Thousand Oaks, CA: Sage., & ([Page xvii]2004). Diabetes, major depression, and functional disability among U.S. adults. Diabetes Care, 27, 421–428. http://dx.doi.org/10.2337/diacare.27.2.421(2010). Creating a high-performance system for comparative effectiveness research. Health Affairs, 29, 1761–1767. http://dx.doi.org/10.1377/hlthaff.2010.0608(European Disability Forum. (2003). Disability and social exclusion in the European Union: Time for change, tools for change. Athens: Greek National Confederation of Disabled People.European Union. (2000). Charter of fundamental rights. Retrieved from http://www.europarll.europa.eu/charter2010). Trajectories of disability in the last year of life. The New England Journal of Medicine, 362(13), 1173–1180. http://dx.doi.org/10.1056/NEJMoa0909087, , , & (2010). Cloud computing and disability communities: How can cloud computing support a more accessible information age and society?Boulder, CO: Coleman Institute., & (2006). More than ramps. Oxford, UK: Oxford University Press. http://dx.doi.org/10.1093/acprof:oso/9780195172768.001.0001, & (2010). The political fight over comparative effectiveness research. Health Affairs, 29, 1757–1760. http://dx.doi.org/10.1377/hlthaff.2010.0901(Institute of Medicine. (1991). Disability in America. Washington, DC: National Academies Press.Institute of Medicine. (1997). Enabling America. Washington, DC: National Academies Press.Institute of Medicine. (2001). Health and behavior: The interplay of biological, behavioral and societal influences. 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Measuring disability prevalence (World Bank working paper). Washington, DC: The World Bank.(2009). Key concepts in disability. The Lancet, 374, 1795–1796. http://dx.doi.org/10.1016/S0140-6736%2809%2961527-0, & ([Page xviii]2010, October 28). Dawn of a new day. Ray Ozzie's Blog. Retrieved from http://ozzie.net/docs/dawn-of-a-new-day(2010). Little evidence of correlation between growth in health care spending and reduced mortality. Health Affairs, 29, 1523–1531. http://dx.doi.org/10.1377/hlthaff.2009.0287, , , , & (2008). Social networks and health. Annual Review of Sociology, 34, 405–429. http://dx.doi.org/10.1146/annurev.soc.34.040507.134601, & (United Nations. (2008). Convention on the rights of persons with disabilities. New York: United Nations. Retrieved from http://un.org/disabilities/convention2010). Anatomy of an epidemic: Magic bullets, psychiatric drugs, and the astonishing rise of mental illness in America. 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Any study of disability experiences and issues would not be complete without attention to the contributions from the arts and humanities. We begin our volume with this statement because we believe the rest of the volume will support this assertion. And we begin here too because even 15 to 20 years ago it would not have been possible to talk or write about the field of disability studies (which is now considerably situated in the arts and humanities) as anything but an emerging field. As Pamela Cushing and Tyler Smith pointed out in a longitudinal study of the field published in Disability Studies Quarterly in 2009:
In the last two decades the field of Disability Studies (DS) has made an impressive ascent into a position of academic recognition…. We discovered a proliferation of degrees and courses as well as new DS research centers, speakers’ series, journals and special issues that speak to the vital pockets of interest in the field.
Our volume evidences that ascent, recognition, and proliferation, and it further illuminates some of the “vital pockets of interest” in disability studies, particularly as those pockets contain work in disciplines typically housed in the arts and humanities.
We outline below some of the major contributions that the arts and humanities have made to the study of disability issues in general, across many disciplines. We focus on the ways that the arts and humanities have
- questioned models of disability;
- studied how representation (of others and self-representation) works;
- inquired into the language and concepts we use to understand our bodies and minds; and[Page xx]
- considered disability as part of diversity and identity studies (along with fields like women's and gender studies, Latino/a studies, Native American studies, African American studies, etc.).
These four major contributions are but some of the reasons why we think disability studies in the arts and humanities has now become indispensible to any study of disability. We encourage you to keep in mind what we see as some of the major contributions that disability studies in the arts and humanities make, as you read and notice important themes that might also emerge for you.Disability Studies in the Arts and Humanities Has Begun to Question Some of the Other Longstanding Models of Disability (Such as Medical, Rehabilitation, and Educational Models).
For most of the history of studying disability issues, models that characterize disability as an abnormal condition have been used. For example, the medical field approaches disability and illness as something to be removed from an individual in order to restore or rehabilitate that person back to health. And in our education system, we have special education classes for students who fall outside the range of “normal.” Many people have internalized these models as the only way to understand and respond to disability. And while many good things have come from medical, rehabilitation, and educational approaches to disability, disability studies in the arts and humanities has pointed out ways in which these models could be revised and rethought.
One of the major contributions that disability studies has made is the very idea that disability is, both simply and profoundly, part of what it means to be human; rather than an abnormal condition, it is a part of life. If we think of our bodies and minds as functioning differently throughout our lives (since bodies and minds certainly do change as we age), disability becomes an issue, an identity, and a condition that affects almost every person and almost every aspect of life. In the second half of the 20th century, disability studies scholars have suggested new models for understanding disability, all based on the idea that disability is part of what it means to be human. For example, the social model views disability as a consequence of barriers, both physical and cultural. This model states that the environment and our attitudes toward disability should be changed [Page xxi]so that disabled people can participate more fully in society. Another example is the rights-based model of disability, which understands disabled people as a group deserving human and civil rights. Under this model, disability rights activists have gathered to counter ableism in the same way that racism and sexism have been addressed and analyzed. In Chapters 1 and 2 of this volume, we continue the discussion about different models of disability, detailing what they are and what they each add to an understanding of disability.Disability Studies in the Arts and Humanities Has Delved into the Issue of Representation in a Number of Ways.
Specifically, we see three ways that the general construct of representation has been “opened up” by exploration by disability theorists, activists, and artists. The first way that disability studies has expanded conversations about representation is in its study of literature and art. Scholars such as G. Thomas Couser (2009), Sander Gilman (1988), Rosemarie Garland-Thomson (1996, 2002), Michael Davidson (2008, 2010), and David Mitchell and Sharon Snyder (1997, 2000) have pointed to the ways in which disabled characters in literature, film, and television are often used to represent negative ideas, such as evil, guilt, or tragedy. And regardless of what they are specifically meant to represent, disabled characters often function as literary devices, rather than providing realistic portrayals of people living with disability. Consider, for example, how Captain Hook's disability serves as a signal that he is a villain and should be feared. Or consider how Tiresias's blindness is often explained by literary scholars as a marker of his insight and wisdom. In both cases, disability itself is not represented, but is used to deliver some other message. Disability studies scholars have pointed out the way disability is often used in literature and art in order to complicate and challenge these representations.
These complications and challenges bring us to the second way that disability studies has influenced our understanding of representation, which is through disabled individuals speaking for themselves about their experiences (rather than being spoken about by caregivers or medical professionals). Disability activists have often used the phrase “Nothing about us without us,” capturing the idea that disabled people should be part of creating the literature, art, laws, policies, history, etc. about disability. This simple idea—that disabled people are the authority on their own experiences—has marked effects on the way disability is [Page xxii]represented. Can you imagine how a disability rights activist and/or scholar might rewrite the character of (blind) Tiresias, for example, to present a more realistic account of living with blindness?
Finally, the third way that disability studies has expanded our understanding of representation is through the creation of works of art as cultural artifacts. Such works of art help create a shared disability experience because people are able to identify with artwork and memoirs. We could look to the poems of Jim Ferris or the paintings by Riva Lehrer as examples. But we could also easily look to comments left by http://Amazon.com reviewers in response to memoirs about disability. Memoirs about living with disability are artifacts that define a community of people, and they are signs of a shared disability identity.Disability Studies in the Arts and Humanities Has Considered a Number of Key Concepts That Structure Our Worldview, Such as “Normal.”
We often assume that we have an idea of what it means to be “normal.” We might expect, for example, a normal college student to be between the ages of 18 and 22. Or we may believe we can recognize whether or not a person falls into the range of normal height and weight. We may think there is not much to talk about in regards to what it means to be normal. However, in recent years disability studies scholars in the arts and humanities have become interested in the concept of normal as something that is difficult to pin down. Not only does it change over time and across cultures (just think of what style of jeans was considered normal 50 years ago as opposed to now!), but it is incredibly difficult to actually be a “normal” person in every sense of the word. Rosemarie Garland-Thomson, Tobin Siebers, Robert McRuer, and Lennard Davis have all written about how only a small minority of real people could be considered “normal” in every way, because almost all people deviate from whatever their culture deems normal. McRuer takes as an example what we consider normal in American culture, which includes proper dimensions of height and weight, freedom from chronic illness, Euro-American standards of beauty, and heterosexuality, among other things (2006). According to Lennard Davis, we learn what is normal in our own culture through many positive representations of normal characters and negative representations of abnormal characters in books, movies, TV shows, and other cultural objects. Davis calls this process of equating normal with positive traits [Page xxiii]“enforcing normalcy” (1995). Without the work of disability studies scholars like Garland-Thomson, McRuer, Davis, and others, we would know far less about the idea of what it means to be normal. And as we discuss in Chapters 1 and 2, disability studies scholars have provided similar insights into the very meaning of disability and ability.Disability Studies in the Arts and Humanities Has Positioned Disability as Part of the Interdisciplinary Study of Diversity and Identity.
This point is a specific example of how nonmedical models can lead to new understandings of disability. As we mentioned earlier, when the rights-based model is used, disability becomes an identifier for a group of activists working to redress ableism. Because the disability rights movement in America has followed a trajectory similar to the civil rights movement and the feminist movement, disability is now often grouped with other studies of identity groups in the university. For example, at The Ohio State University, disability studies is an active part of the Diversity and Identity Studies Collective at Ohio State (DISCO). More and more, disability is being understood as part of who one is, not a condition one has. In large part because of disabled people writing and speaking about their own experiences (which usually happens in the arts and humanities), disability is being thought of as part of one's identity, rather than a biological fact—similar to how we understand what it means to be a woman or an African American.
In summary and preface then, disability studies in the arts and humanities has added new perspectives to the study of disability. Indeed, an entirely new discipline has been formed under the name “disability studies” to study disability from the perspective of disabled people and in ways outside of the medical field. This new discipline has moved the creation of knowledge about disability outside of the social and medical sciences, and has brought attention to the need for interdisciplinary studies of disability issues.Acknowledgments
This volume was a collaborative effort, and it would not have been possible without the unique assistance of my three collaborative contributors.
[Page xxiv]Elizabeth Brewer is a Ph.D. candidate in Rhetoric, Composition, and Disability Studies at The Ohio State University. She has published in Rhetoric Review and presented on ethos construction and psychiatric disability. Elizabeth's key contributions were in her methodical and consistent organization. She was also easygoing and good at writing in an easy-to-understand style. She would like to thank Bradley Olson and Rob Brewer for all they have taught her.
Nicholas Hetrick holds a Ph.D. in English from The Ohio State University and teaches Upper School English at The Wellington School in Columbus, Ohio. He has published essays on documentary film (in Image and Narrative) and graphic novels (in Multicultural Comics: From Zap! to Blue Beetle, edited by Frederick Luis Aldama). Nick served as our primary editor, and he was good at writing in a style that was clear and easy to understand. He was by far the best one at meeting deadlines! Nick would like to thank Lesley Smith Hetrick, Micah Hetrick, and Sue Hetrick (his heroes).
Melanie Yergeau is an Assistant Professor of English at the University of Michigan. She has published in College English, Disability Studies Quarterly, Computers and Composition Online, and Kairos. Active in the neurodiversity movement, Melanie is the Board Chair of the Autistic Self Advocacy Network, an organization run for and by Autistic people. Additionally, she serves on the board of the Autism National Committee, as well as the National Advisory Committee of the Autism NOW Center, an initiative of The Arc and the Administration on Developmental Disabilities. She blogs semi-regularly at http://aspierhetor.com. Melanie contributed to the production of this volume as our principal note-taker, chart-maker, bibliography-creator, and the one who kept us generally organized. She would like to thank Rich Lyons and the Electric Light Orchestra.
I would also like to thank all of my closest friends and comrades in disability studies (you know who you are!) and to acknowledge the support the contributors and I received from our respective families and friends. Their patience and generosity allowed us time and encouragement to write. Finally, my gratitude goes to our shared university at the time of the initial development and collaboration on the volume: The Ohio State University, Department of English.[Page xxv]References[Page xxvi]2009). Signifying bodies: Disability in contemporary life writing. Ann Arbor: University of Michigan Press.(2009). A multinational review of English-language disability studies degrees and courses. Disability Studies Quarterly, 29(3). Retrieved from http://dsq-sds.org/article/view/940/1121, & (2008). Concerto for the left hand: Disability and the defamiliar body. Ann Arbor: University of Michigan Press.(2010). Phantom limbs: Film noir and the disabled body. In S.Chivers & N.Markotic (Eds.), The problem body: Projecting disability on film (pp. 43–66). Columbus: The Ohio State University Press.(1995). Enforcing normalcy: Disability, deafness, and the body. London, UK: Verso.(1996). Extraordinary bodies. New York, NY: Columbia University Press.(2002). The politics of staring: Visual rhetorics of disability in popular photography. In S. L.Snyder, B. J.Brueggemann, & R.Garland-Thomson (Eds.), Disability studies: Enabling the humanities (pp. 56–75). New York, NY: MLA Press.(1988). Disease and representation: Images of illness from madness to AIDS. Ithaca, NY: Cornell University Press(2006). Crip theory: Cultural signs of queerness and disability. New York: New York University Press. http://dx.doi.org/10.1080/15017410701880122(1997). The body and physical difference: Discourses of disability. Ann Arbor: University of Michigan Press., & (2000). Narrative prosthesis: Disability and the dependencies of discourse. Ann Arbor: University of Michigan Press., & (
About the Author
About the Series Editor[Page xxix]
Gary L. Albrecht is a Fellow of the Royal Belgian Academy of Arts and Sciences, Extraordinary Guest Professor of Social Sciences, University of Leuven, Belgium, and Professor Emeritus of Public Health and of Disability and Human Development at the University of Illinois at Chicago. After receiving his Ph.D. from Emory University, he has served on the faculties of Emory University in Sociology and Psychiatry, Northwestern University in Sociology, Rehabilitation Medicine, and the Kellogg School of Management, and the University of Illinois at Chicago (UIC) in the School of Public Health and in the Department of Disability and Human Development. Since retiring from the UIC in 2005, he has divided his time between Europe and the United States, working in Brussels, Belgium, and Boulder, Colorado. He has served as a Scholar in Residence at the Maison des Sciences de l'Homme (MSH) in Paris, a visiting Fellow at Nuffield College, the University of Oxford, and a Fellow in Residence at the Royal Flemish Academy of Science and Arts, Brussels.
His research has focused on how adults acknowledge, interpret, and respond to unanticipated life events, such as disability onset. His work, supported by over $25 million of funding, has resulted in 16 books and over 140 articles and book chapters. He is currently working on a longitudinal study of disabled Iranian, Moroccan, Turkish, Jewish, and Congolese immigrants to Belgium. Another current project involves working with an international team on “Disability: A Global Picture,” Chapter 2 of the World Report on Disability, co-sponsored by the World Health Organization and the World Bank published in 2011.
He is past Chair of the Medical Sociology Section of the American Sociological Association, a past member of the Executive Committee of the Disability Forum of the American Public Health Association, an early [Page xxx]member of the Society for Disability Studies, and an elected member of the Society for Research in Rehabilitation (UK). He has received the Award for the Promotion of Human Welfare and the Eliot Freidson Award for the book The Disability Business: Rehabilitation in America. He also has received a Switzer Distinguished Research Fellowship, Schmidt Fellowship, New York State Supreme Court Fellowship, Kellogg Fellowship, National Library of Medicine Fellowship, World Health Organization Fellowship, the Lee Founders Award from the Society for the Study of Social Problems, the Licht Award from the American Congress of Rehabilitation Medicine, the University of Illinois at Chicago Award for Excellence in Teaching, and has been elected Fellow of the American Association for the Advancement of Science (AAAS). He has led scientific delegations in rehabilitation medicine to the Soviet Union and the People's Republic of China and served on study sections, grant review panels, and strategic planning committees on disability in Australia, Canada, the European Community, France, Ireland, Japan, Poland, Sweden, South Africa, the United Kingdom, the United States, and the World Health Organization, Geneva. His most recent books are The Handbook of Social Studies in Health and Medicine, edited with Ray Fitzpatrick and Susan Scrimshaw (SAGE, 2000), the Handbook of Disability Studies, edited with Katherine D. Seelman and Michael Bury (SAGE, 2001), and the five-volume Encyclopedia of Disability (SAGE, 2006).
Glossary of Key Terms[Page 251]
ADASee Americans with Disabilities Act of 1990 (ADA)
Americans with Disabilities Act of 1990 (ADA) This sweeping civil rights law prohibits discrimination against people with disabilities in employment, public transportation, public accommodations, and telecommunications. Under Title I of this law, individuals are considered to have a disability if they have a “physical or mental impairment that substantially limits one or more major life activities” or are “regarded as having such an impairment.”
CCCCSee Conference on College Composition and Communication (CCCC)
Conference on College Composition and Communication (CCCC) The flagship conference for college writing teachers and researchers in the United States. It began to consider disability—as a question of human rights, as a critical modality, as an identity category—in the late 1990s.
Deaf President Now (DPN) Protest A successful weeklong rally held by students at Gallaudet University in 1988 to petition the board of trustees to appoint a deaf person as president of the university. It resulted in the hiring of I. King Jordan as the school's first deaf president and became a milestone in the disability rights movement.
Deviance A cultural viewpoint that accepts a firm boundary between normal and abnormal and assigns a negative value to abnormality and disability.
[Page 252]Difference A cultural viewpoint that offers a neutral view of variation and disability as key components of humanity.
Disability A highly contested term that encompasses the complex interaction between physical and mental impairments and the physical, human-built, social, and attitudinal environment. Impairments represent intrinsic features of a person's body and mind, and may restrict mobility, vision, communication, or other body functions. The environment may facilitate the performance of activities and social roles, in the form of assistive devices or accommodations, or may worsen the performance of activities and social roles, by acting as barriers.
Disability Aesthetics A field of study that examines the relationship between disability and the concept of beauty. It raises questions about the relationship between bodies and beauty and asserts that any definition of beauty is necessarily political because it must say something about what kinds or proportions of bodies are beautiful.
Disability Art A term that encompasses art by people with disabilities, art about disability, and art that advances an activist agenda or represents disability a certain way.
Disability Rights Movement (DRM) An advocacy movement that began in the 1970s, drawing upon earlier successes of the civil rights and women's liberation movements. It was instrumental in pressuring the U.S. Congress to adopt various disability policies and laws.
Disability Studies A diverse, interdisciplinary academic field that examines the social, cultural, and political implications of disability.
Disability Studies in the Humanities An academic field that has used critical theory to shape ideas about disability as part of what it means to be human, to argue for equal rights, to contend that the value of disability is culturally specific and socially constructed, and to show that disability is a political issue. While the medical fields view physicians as the experts on disability, the humanities view disabled people as the experts.
DPNSee Deaf President Now (DPN) Protest
[Page 253]DRMSee Disability Rights Movement (DRM)
Freak Shows For-profit exhibitions of different and disabled bodies at circuses, carnivals, and other venues that flourished in America between 1840 and 1940.
Function The normal physiological action or activity of a body part, organ, or system.
Identity Model of Disability A paradigm that views disability as a marker of membership in a minority identity, much like gender or race. Under this model, disability is primarily defined by a social and political experience of the effects of a system not designed with disabled people in mind.
Impairment A biomedical, underlying functional condition, intrinsic to the person, that constitutes the health component of disability. Impairments may be sensory (difficulty in hearing or visual impairment), physical (difficulties in moving or standing up), or psychological (difficulty in coping with stress, depression, or memory loss).
Individuals with Disabilities Education Act (IDEA) of 1975 This legislation requires states to provide children with disabilities with a free and appropriate public education designed to meet each child's specific needs; it also established the definition of disability used in special education law.
Medical Model of Disability A paradigm that views disability as a deficit in the human body that results in a departure from the normative functioning of healthy human bodies and that is largely unconnected to the social or geographical environment. Under this model, medical professionals are considered best equipped to address disability, and they do so as they would other illnesses and diseases.
MLASee Modern Language Association (MLA)
Model of Disability A general theory or conceptual model that embodies a fundamental perspective of what disability is, and therefore generates one or more operational definitions of disability.
[Page 254]Modem Language Association (MLA) A professional organization dedicated to strengthening the study and teaching of language and literature. It inaugurated its Committee on Disability Issues in the Profession (CDI) in 1995.
Normate A term coined by Rosemarie Garland-Thomson to describe what is understood as the definitive, generalizable human being—that which is thought to be normal. The power of Garland-Thomson's term is that only a small minority of real people could be considered normates, because almost all people deviate in some way from whatever their culture deems normal.
Nothing About Us Without Us A phrase—pervasive in the political disability rights movement and prevalent in disability studies in the academy—meaning that no action should be taken or utterance made regarding disability without the consent, authorization, or origination (i.e., originating with) of disabled people.
Representation The action of speaking or acting on behalf of someone, or describing or portraying someone in a particular way. Representation is a core concept in disability studies and a major category for critically framing the study of disability within the arts and humanities, which is concerned with representations of disability in literature, art, film, music, and popular media.
Social Constructionism The idea, first articulated by sociologists James L. Berger and Thomas Luckmann in The Social Construction of Reality (1966), that all social patterns are based on concepts people develop over a long history of group interactions and the roles members of a society imagine for themselves and for others.
Social Model of Disability A paradigm that views disability as socially constructed, in that people with certain types of physical impairments are unnecessarily disabled, isolated, and excluded by features of society, such as inaccessible buildings, prejudicial attitudes, and inflexible educational systems aimed at students who learn only in certain ways. Under this model, disability is best addressed through efforts at rendering those social features more accessible so that disabled people can participate as full members of society.
[Page 255]TABSee Temporarily Able-Bodied (TAB)
Temporarily Able-Bodied (TAB) A term that reflects the drive to understand disability as a human condition and as something more normal and inevitable than being able-bodied.
UDSee Universal Design (UD)
Universal Design (UD) An architecture-related concept that emphasizes inclusion throughout the process of designing products, furnishings, buildings, and other aspects of the built world in order to make them usable for all people.[Page 256]