Assistive Technology and Science

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Cathy Bodine

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  • The SAGE Reference Series on Disability: Key Issues and Future Directions

    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

    View Copyright Page

    Series Introduction

    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 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 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 or 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 longstanding 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 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 spinalcord 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 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 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
    • Education
    • 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
    • Preface
    • 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
    • Index
    The Audience

    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. 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.

    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 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.

    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.

    Gary L.AlbrechtUniversity of Illinois at Chicago, University of Leuven, Belgian Academy of Science and Arts
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    Preface

    In today's world, technology has become ubiquitous. Cell phones, tablets, desktops, ATMs, games, and cash registers are all connected. For people with disabilities, technology not only creates access to the world at large, it also creates greater opportunities for education, work, and play. On the flip side, technology can make life more difficult for persons with disabilities. Small buttons and keyboards that are confusing, graphics without tag lines to tell the individual what is on the screen, and many other technical aspects can create confusion, frustration, and limited access to the world at large. But these are all aspects that can be dealt with.

    This volume explores the history and current status of assistive technology (AT) and accessible mainstream commercial technologies. Its purpose is to share where we are in the life cycle of technology for persons with disabilities; to examine historical aspects and future trends, along with legislative and funding issues. The need for professional development training and outreach to create an informed constituency is also explored. This volume introduces the topic of assistive technology and offers resources and information about where to go to learn more.

    In Chapter 1, Introduction, Background, and History, we provide a brief overview of the field of assistive technology, which includes both devices and services. This overview of AT devices and services includes definitions, history, and legislation. It discusses the types of AT available for people with communication disorders, impaired mobility, hearing and visual impairments, and cognitive/learning disabilities. It also describes the selection of appropriate technology and training in its use, suggests ways to avoid the abandonment of assistive technology by clients and caregivers, and discusses the principles of clinical assessment and physician responsibility. Finally, it briefly discusses the future in terms of research and development and application of emerging technologies to the needs of people with disabilities.

    In Chapter 2, Current Issues, Controversies, and Solutions, we discuss the issues that surround the field of AT. Even though AT devices and services have existed for many years, the actual field of assistive technology is still emerging. While substantial progress has also been made in developing thousands of assistive technologies and creating enhanced accessibility for persons with disabilities to mainstream commercial products such as computers and cell phones, obtaining funding for these devices and services remains an often-insurmountable barrier. This chapter discusses issues that arise for an often-underserved population as a result of the topsy-turvy growth of the field along with the exponential explosion of new and emerging technologies.

    In Chapter 3, Chronology of Critical Events, we explore, beginning in 1808, the history of technology developments and applications for persons with disabilities, as well as legislation, public policies, and civil rights movements related to persons with disabilities. We hope that the reader will see the trends and conditions that have impacted the rights and responsibilities of persons with disabilities, their families, care providers, and AT manufacturers and developers.

    In Chapter 4, Biographies of Key Contributors in the Field, we provide information on a number of amazing individuals with disabilities, policymakers, developers, and caregivers who have been influential in furthering the field of AT for people with disabilities. Authors and advocates of important public policies and legislation addressing the benefits and risks of using technology to increase independence for persons with disabilities are also highlighted. Biographical sketches are included for each person and references for more information are provided.

    In Chapter 5, Annotated Data, Statistics, Tables, and Graphs, we provide information on technology and disability to the extent possible. This was a difficult chapter to prepare, as the field of assistive technology suffers from a paucity of available data. This chapter may, in the end, be the most important, as it so clearly delineates what data is available and the age of the data. Although much of the data felt too old to include, it was not superseded by new information. This chapter also, more than any other chapter within the book, points the reader to the critical need to develop strategic and comprehensive data collection systems in order for us to truly analyze where we are and where we need to go in terms of evidence-based outcomes, usage data, and much more.

    Chapter 6, Annotated List of Organizations and Associations, and Chapter 7, Selected Print and Electronic Resources, include reference material in order for the reader to seek out more information and available research on selected topics. In these chapters, we provide a brief description, contact information, and Web sites for multiple organizations and associations, as well as annotated listings of print and electronic resources. The topic areas are wide ranging and, we hope, of much use for the reader.

    The goal of this volume is to excite next-generation researchers, people with disabilities, and their caregivers and family members who may be new, or relatively new, to the potential that technology has to offer for persons with disabilities. Technology applicable to persons with disabilities is becoming, and will become, ever more recognizable as a first-line option for persons with disabilities who wish, just like persons without disabilities, to go about their lives as productive and independent citizens.

    Acknowledgments

    An effort such as this volume in the Sage Reference Series on Disability would not have been possible without the support and efforts of the series editor, Gary Albrecht, and Jim Brace-Thompson, senior editor at Sage Reference. Kevin Hillstrom and Laurie Collier Hillstrom of Northern Lights Writers Group were unbelievably kind and supportive during the often-frustrating task of pushing the author and our contributors to an end product. They all deserve a very large gold star!

    This volume could not have been completed without the able contributions of faculty at Assistive Technology Partners, Departments of Physical Medicine and Rehabilitation, Pediatrics and Bioengineering, University of Colorado, School of Medicine.

    Lorrie Harkness, Ph.D., and Maureen Melonis, MNS, CCC-SLP, faculty with extraordinary experience and knowledge within the field of AT, provided immense support and help in the preparation of this volume. Dr. Harkness contributed extensively to Chapter 3, Chronology of Critical Events and Chapter 6, Annotated List of Organizations and Associations. She deserves full credit for her attention to detail and writing ability. Ms. Melonis also contributed to Chapter 3 and particularly to Chapter 7: Print and Electronic Resources. Both Dr. Harkness and Ms. Melonis were instrumental in completing Chapter 4, Biographies of Key Contributors in the Field, and Chapter 5, Annotated Data, Statistics, Tables, and Graphs. Without their work, this volume could not have been completed. Their contribution to this volume enabled us to provide the reader with as much historical and current data as possible. It is not often that the word team can be used when describing a long and arduous process. In this case, the word team amply describes what we are about at Assistive Technology Partners.

    Without these terrific partners and friends, this volume would not have been possible, and I am forever thankful for their help and support.

    CathyBodine

    About the Author

    Cathy Bodine, Ph.D., CCC-SLP, is an Associate Professor and Section Head in the Department of Physical Medicine and Rehabilitation and Department of Pediatrics, an Affiliate Faculty Member in the Department of Bioengineering, and Executive Director of Assistive Technology Partners at the University of Colorado, Anschutz Medical Campus.

    Dr. Bodine began her career in assistive technology in 1985. She joined the faculty of the University of Colorado, Anschutz Medical Campus in 1996. Today, she is internationally recognized for her leadership in the field of assistive technology and vigorously pursues her passions for new product design, research, service to families and persons with disabilities, and the professional assistive technology community at large through her leadership of Assistive Technology Partners.

    Dr. Bodine has served as the principal investigator (PI) for a number of preservice professional preparation grants, as well as the Colorado Assistive Technology Act. In addition, she has served as the PI for several research and development projects leading to new designs in AT devices. She also led a U.S. Department of Education funded Field Initiated Development Project utilizing the International Classification of Functioning to measure assistive technology outcomes. She is the principal investigator for the Rehabilitation Engineering Research Center for Advancing Cognitive Technologies (RERC-ACT). Dr. Bodine serves on numerous national and international boards and is a frequent author and lecturer.

    About the Series Editor

    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 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, South Africa, Sweden, 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

    AACSee Augmentative and Alternative Communication (AAC)

    Abandonment A situation that occurs when a person with a disability stops using an assistive technology device or service; on average, one-third of optional assistive technologies are abandoned, most within the first three months.

    Activities of Daily Living (ADL) A set of daily self-care tasks such as feeding, bathing, dressing, and grooming; the level of ability to perform ADL provides a measurement of an individual's degree of disability and functioning. ADL equipment, which is designed to make an individual more independent in a specific daily living task, includes bath seats, toileting aids, built-up spoon handles, and zipper pulls.

    ADASee Americans with Disabilities Act of 1990 (ADA)

    ADLSee Activities of Daily Living (ADL)

    Americans with Disabilities Act of 1990 (ADA) This law clarified the civil rights of persons with disabilities and specified equal access to public places, employment, transportation, and telecommunications; employers are expected to provide “reasonable accommodations,” and public and private entities that provides services (i.e., health care) are expected to make reasonable modifications, unless doing so would cause them undue hardship.

    App Short for application software, this type of user-driven computer software is designed to help people perform specific tasks.

    Assistive Technology (AT) Any item, piece of equipment, or system, whether acquired commercially, modified, or customized, that is commonly used to increase, maintain, or improve functional capabilities of individuals with disabilities. AT is a tool used by someone with a disability to perform everyday tasks, such as getting dressed, moving around, or controlling his or her environment, learning, working, or engaging in recreational activities.

    Assistive Technology Services Any service that directly assists an individual with a disability in the selection, acquisition, or use of an assistive technology device.

    ATSee Assistive Technology (AT)

    Augmentative and Alternative Communication (AAC) Devices that can either augment or provide a voice for persons with severe expressive language impairments. See also Speech Generating Device (SGD)

    CARTSee Computer-Assisted Real-Time Translation (CART)

    Computer-Assisted Real-Time Translation (CART) An AT solution for persons with significant hearing impairments; it involves a specially trained typist or stenographer who captures what is being spoken and projects the text onto a display.

    CPESee Customer-Premises Equipment (CPE)

    Customer-Premises Equipment (CPE) Telecommunications equipment used in the home or office (or other premises) to originate, route, or terminate telecommunications.

    Disability A term that encompasses the complex interaction between an individual's physical, built, social, or attitudinal environment and his or her functional limitations from physical, sensory, communication, or cognitive impairments.

    DMESee Durable Medical Equipment (DME)

    Durable Medical Equipment (DME) Assistive devices that serve a medical purpose; are able to withstand repeated use; are not useful to an individual in the absence of an illness, injury, functional impairment, or congenital abnormality; and are appropriate for use in or out of the patient's home.

    EADLSee Electronic Aids to Daily Living (EADL)

    Early Intervention (EI) Educational programs that target children from birth to three years old and are designed to improve the children's developmental, social, and learning outcomes; such programs often include speech and language therapy, physical therapy, occupational therapy, social work, and assistive technology.

    EARNSee Employer Assistance and Resource Network (EARN)

    ECUSee Environmental Control Unit (ECU)

    EISee Early Intervention (EI)

    Electronic Aids to Daily Living (EADL) Technologies that provide alternative control of electrical devices within the environment and increase independence in tasks of daily living; within the home or work environments, EADLs can control audiovisual equipment, communication equipment, doors, electric beds, security equipment, lights, and appliances.

    Employer Assistance and Resource Network (EARN) A resource for employers seeking to recruit, hire, retain, and advance qualified employees with disabilities. EARN supports employers by providing confidential, no-cost consultation and technical assistance, customized training, comprehensive online resources, and links to state and local community-based organizations serving job seekers with disabilities.

    Environmental Control Unit (ECU) An alternative term for electronic aids to daily living (EADL) that is considered less accurate because it emphasizes the item being controlled (i.e., the telephone) rather than the task being aided (i.e., communication).

    504 Plan Offered under the Section 504 of the Rehabilitation Act, this education program is designed to accommodate school-age children who need accommodations or modifications in order to achieve academic success, but who do not need special education services.

    Function The physiological action or activity of a body part, organ, or system.

    HTISee Human Technology Interface (HTI)

    Human Technology Interface (HTI) The interaction between people and technological devices in their environment; individuals with impairments that affect this interaction may need special consideration in the design, function, or placement of the devices they want or need to activate.

    ICFSee International Classification of Functioning, Disability, and Health (ICF)

    IDEASee Individuals with Disabilities Education Act of 1990 (IDEA)

    IEPSee Individualized Education Program (IEP)

    IFSPSee Individualized Family Service Plan (IFSP)

    IPESee Individualized Plan for Employment (IPE)

    Impairment A biomedical, underlying functional condition that is intrinsic to a person and constitutes the essential health component of disability; impairments may be sensory (difficulty in hearing, touch, or visual impairment), physical (difficulties in moving or standing up), cognitive or psychological (difficulty in coping with stress, depression, thinking and remembering).

    Individualized Education Program (IEP) Mandated by the Individuals with Disabilities Education Act (IDEA), the IEP documents and guides the process of identifying and referring eligible school-age children for special education services, assessing their needs, planning and implementing individualized programs to meet their needs, and monitoring and evaluating the programs’ effectiveness; the IEP must indicate that AT has been considered as a way “to provide meaningful access to the general curriculum.”

    Individualized Family Service Plan (IFSP) Mandated by the Individuals with Disabilities Education Act (IDEA), the IFSP documents and guides the early intervention (EI) process for young children with disabilities and their families, with the goal of improving the children's physical, cognitive, social, and emotional growth.

    Individualized Plan for Employment (IPE) A written document created by a state VR agency that outlines an individual's vocational goals and the services to be provided to help the individual reach those goals.

    Individuals with Disabilities Education Act of 1990 (IDEA) Also known as P.L. 101–176, this legislation specifies that AT devices and services be provided to children from birth to age 21 to facilitate education in a regular classroom if such devices and services are required as part of the student's special education, related services, or supplementary aids and services.

    International Classification of Functioning, Disability, and Health (ICF) Released in 2001 by the World Health Organization (WHO), this conceptual model of disability provides a common framework and language for the description of health and health-related domains; it views disability and functioning as outcomes of the interactions between health conditions and contextual factors.

    JANSee Job Accommodation Network (JAN)

    Job Accommodation Network (JAN) A free service that offers employers and individuals ideas about effective workplace accommodations; vocational counselors, employees, or employers can perform individualized searches for workplace accommodations based on a job's functional requirements, the functional limitations of the individual, environmental factors, and other pertinent information.

    Least Restrictive Environment (LRE) A mandate of the Individuals with Disabilities Education Act (IDEA) that requires children with disabilities to receive their special education in settings that provides access to their greatest participation in the regular classroom while ensuring maximum educational benefit.

    LRESee Least Restrictive Environment (LRE)

    ODEPSee Office of Disability Employment Policy (ODEP)

    Office of Disability Employment Policy (ODEP) A sub-cabinet level agency in the U.S. Department of Labor that is charged with building collaborative partnerships and delivering authoritative and credible data to ensure that people with disabilities are fully integrated into the American workforce.

    PAATSee Protection and Advocacy for Assistive Technology (PAAT)

    Prosthetic A type of artificial device used to replace or augment a missing or impaired body part.

    Protection and Advocacy for Assistive Technology (PAAT) A federal program that provides funding to assist individuals with disabilities in the acquisition, utilization, or maintenance of assistive technology devices or services through case management, legal representation, and self-advocacy training.

    Reasonable Accommodation Any change in the work environment or in the way things are customarily done that enables an individual with a disability to apply for a job, perform a job, or gain equal access to the benefits and privileges of a job.

    Rehabilitation Act of 1973 A U.S. law that authorizes and provides funding for rehabilitation programs and services, among them the state-federal vocational rehabilitation system, centers for independent living, and the National Institute on Disability and Rehabilitation Research. Section 504 of the act prohibits discrimination on the basis of disability in employment and in the delivery of services by state and private programs that receive federal funding.

    Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) This organization hosts an academic credentialing program in assistive technology that offers national participation for three specialties: assistive technology professional (ATP); seating and mobility specialist (SMS); and rehabilitation engineering technologist (RET).

    Rehabilitation Engineering Research Center for the Advancement of Cognitive Technologies (RERC-ACT) A government-funded scientific effort to develop assistive technologies focused on vocational and literacy skills, service provision, and enhanced caregiving supports for persons with significant cognitive impairments.

    Rehabilitation Technology The use of technology, engineering, or scientific principles to meet the needs of and address the barriers faced by people with disabilities in areas which include education, rehabilitation, employment, transportation, independent living, and recreation; rehabilitation technology is divided into three categories: rehabilitation engineering, assistive technology devices, and assistive technology services.

    Repetitive Strain or Stress Injuries (RSI) Injuries that occur when too much stress is placed on a part of the body, usually from repeating the same movements over and over, resulting in pain, inflammation, muscle strain, or tissue damage.

    RERC-ACTSee Rehabilitation Engineering Research Center for the Advancement of Cognitive Technologies (RERC-ACT)

    RESNASee Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)

    Response to Intervention (RTI) A method of identifying and providing preliminary support to children with disabilities that incorporates assessment, intervention, and progress monitoring; RTI uses a multi-tiered, school-wide approach to promote student achievement and prevent behavior problems.

    RSISee Repetitive Strain or Stress Injuries (RSI)

    RTISee Response to Intervention (RTI)

    Scanning The most common indirect selection method used by persons with significant motor impairments. A selection set is presented on a display and is sequentially scanned by a light or cursor on the device; the user chooses the desired item by pressing a switch.

    Section 504 This section of the Rehabilitation Act of 1973 required programs, services, and entities that receive federal funding to make reasonable accommodations and promote accessibility for people with disabilities.

    SGDSee Speech Generating Device (SGD)

    Speech Generating Device (SGD) An electronic augmentative/alternative communication system used to supplement or replace speech or writing for individuals with disabilities. See also Augmentative and Alternative Communication (AAC)

    TDDSee Telephone Device for the Deaf (TDD)

    Technology-Related Assistance for Individuals with Disabilities Act of 1988 Also known as P.L. 100–407, the Tech Act provided funding to develop statewide, consumer-responsive information and training programs designed to meet the assistive technology needs of individuals with disabilities of all ages.

    TEDPSee Telecommunications Equipment Distribution Program (TEDP)

    Telecommunications Act of 1996 Section 255 of this law requires telecommunications equipment manufacturers and service providers to make their products and services accessible to people with disabilities, as long as this access is readily achievable.

    Telecommunications Equipment Distribution Program (TEDP) Funded through a monthly surcharge on consumer telephone services, this program provides accessible telephone services for consumers with disabilities who struggle with using today's telecommunication equipment because of their disability.

    Telephone Device for the Deaf (TDD) An assistive technology device that allows hearing- and speech-impaired persons to communicate on the telephone by typing a text conversation; also known as a teletypewriter (TTY).

    Teletypewriter (TTY) An assistive technology device that allows hearing- and speech-impaired persons to communicate on the telephone by typing a text conversation; also known as a telephone device for the deaf (TDD).

    TTYSee Teletypewriter (TTY)

    Vocational Rehabilitation (VR) Services designed to help individuals with disabilities gain or regain their independence through employment or some form of meaningful activity and reintegration into society; VR includes such services as vocational guidance, job training, occupational adjustment services, and job placement.

    VRSee Vocational Rehabilitation (VR); Voice Recognition (VR)

    Voice Recognition (VR) A mass-market technology that offers computer access for many persons with motor impairment. Instead of using keyboard, VR users write or speak words out loud; the computer processor uses information from the user's individual voice file, compares it with digital models of words and phrases, and produces computer text.


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