Studying Disability: Multiple Theories and Responses

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Elizabeth DePoy & Stephen French Gilson

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    Preface

    Writing this book has been a gift for us. Over the past five years, since the publication of our last book on disability, Rethinking Disability, we have read widely and have heard and had exchanges with many scholars in Disability Studies and other fields that are relevant to the study of disability, and of course with our students. Our main purpose in writing this book was to continue our commitment to building on the excellent work of current scholars and to advancing well-informed, progressive theory of disability with an eye toward its application to human rights.

    In this work, we have considered and integrated many viewpoints, research studies, and epistemic and axiological positions. Looking backward in history and broadly across the globe has brought us to the marriage of disciplines and ideas that, until now, have not been considered complimentary or relevant to disability. For example, our reading in economics, business, and commerce have stimulated us to consider the power of marketing and branding as definitive of disability as well as a powerful change agent.

    As we read, teach, inquire, and engage with colleagues, we experience the paradox of thinking more broadly yet more sharply focused. In the 21st century context in which we are virtually connected and electronically befriended, we would suggest that this seeming paradox is essential and timely for the progressive thinking necessary to cull and bring diverse knowledge to bear on redefining and responding to disability as part of the larger context of human experience.

    The book is organized into three major sections. The first part, Foundations, provides a historical backdrop and explores the current contextual trends that have been important in shaping perspectives of and responses to disability. We reintroduce our conceptual framework, Explanatory Legitimacy, in this section to provide the reader with a systematic, logical structure through which to analyze the large body of knowledge that we then tackle in the second section. Part II delves into theoretical descriptions and explanations of disability, from classical longitudinal views that prescribe desirable human experience to emerging conceptual frameworks that scramble and then reorder the intellectual universe and thus the study of disability. Parts III and IV put the theory horse to work for us, applying multiple viewpoints to our ultimate ideological aim of creating a world in which all bodies not only fit but also are welcomed with comfort and tolerance.

    Who should read this book? We believe that everyone who is concerned with human rights and diverse bodies should read this work. The ideas are gently provocative in hopes that reading will stimulate rethinking disability as a natural and inherent part of human experience in which fit between bodies and environments needs to be improved. Allowing ourselves to accept a pluralistic understanding of disability can be followed with creative responses that span acceptance to dramatic change.

    Acknowledgments

    We have many to thank for supporting this work. First, we acknowledge the students who have contributed to our thinking, those who studied with us prior to this writing as well as to the students who read this manuscript and offered critical and constructive feedback.

    Of particular note are three of our colleagues who reviewed and provided detailed and valued criticism: Allison Carey, Kristine Mulhorne, and Stephen Marson. Family and friends as well as our colleagues around the world have also been great supports to us.

    Our involvement in scholarly organizations such as the Society for Disability Studies, the Disability Section of the American Public Health Association, and the Disability Studies Issues element of the Association on University Centers of Excellence on Disabilities has provided the opportunity to present ideas as works in progress and receive informed scholarly feedback from our colleagues.

    Our dear colleague and friend, Noomi Katz, in providing the opportunity for us to share our ideas in Israel, influenced us to make our work global and accessible to other national and linguistic cultures.

    Finally, Sandi Oliver has been a model for this book. Her dream, Someday Farms, exists today in Hermon, Maine, and is the epitome of juncture. The equine-human community that she creates at Someday Farms welcomes diverse beings and bodies. Excellence and commitment not only are encouraged for some but also are expectations for all. Sandi has given us the gift of seeing our vision in action.

    Thank you.

    SAGE gratefully acknowledges the contributions of the following reviewers:

    • Brenda Jo Brueggemann, Ohio State University
    • Allison C. Carrey, Shippensburg University
    • Denise De La Garza, University of Texas at Austin
    • Stephen M. Marson, University of North Carolina
    • Kristine A. Mulhorn, Drexel University
    • Nancy Hancock Sharby, Northeastern University
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    About the Authors

    Elizabeth DePoy is professor of social work and interdisciplinary disability studies and also holds an appointment as Senior Research Fellow at Ono Academic College, Research Institute for Health and Medical Professions in Kiryat Ono, Israel. Dr. DePoy is a nationally and internationally recognized scholar in research and evaluation methods and original theory in the fields of disability, diversity, and design. With coauthor, Stephen Gilson, DePoy developed Explanatory Legitimacy Theory, which analyzes how population group membership is assigned, is based on political purpose, and is met with formal responses that serve both intentionally and unintentionally to perpetuate segregation, economic status quo, and intergroup tension.

    DePoy has applied legitimacy theory to the analysis of diversity and human rights. Along with Gilson, DePoy has implemented her vision of socially just policy and praxis, based on principles of full participation and access through the creation of a web portal that renders existing illness prevention information accessible to individuals across diversity category boundaries.

    Her work has created an important theoretical advancement in disability and diversity studies and has been acknowledged as a new paradigm for Disability Studies by many scholars in the field. Most recently, DePoy, with coauthor Gilson, applies design theory and practice to the analysis of diversity categories, their membership and their maintenance.

    DePoy's most recent research interests and publications have focused on epistemology and research methodology, disability as designed, human rights, and advancement of equality of access to environments and resources. Dr. DePoy is currently working on her tenth book, has contributed many chapters to edited collections, and has over 100 articles published in peer-reviewed journals. She has earned over seven million dollars in extramural research grants at the University of Maine. Dr. DePoy presents her work locally, regionally, nationally, and internationally and has collaborative relationships with international scholars. In the service arena, Dr. DePoy provides evaluation, research, and grant writing consultation to agencies and organizations.

    Dr. DePoy's awards for scholarship include:

    • Senior Scholar Award. Society for Disability Studies, June 2009.
    • Elected to The Honor Society of Phi Kappa Phi. University of Maine, April 2009.
    • Distinguished Lifetime Achievement Award. American Public Health Association, October 2008.
    • Faculty Fellowship Summer Institute in Israel. Society for Peace in the Middle East; Sponsored by Bar-Ilan University, Hebrew University of Jerusalem, Ben Gurion University, Tel Aviv University, Haifa University, Technion–Israel Institute of Technology, Jewish National Fund, Media Watch International, Scholars for Peace in the Middle East. Summer 2008.
    • Presidential Research and Creative Achievement Award. University of Maine, May 2007.
    • Outstanding Achievement Award. Association of University Centers on Disability, November 2006.
    • Allan Meyers Award for Scholarship in Disability. American Public Health Association, September 2005.
    • Fulbright Senior Specialist Scholar. Grant awarded to Assuit University, March 2003.
    • Feminist Scholarship Award. Council on Social Work Education, March 2000.

    In Rethinking Disability (2004), and in her most recent writing on disability, DePoy, with coauthor Gilson, takes on the essentialist nature of current diversity categories with a particular focus on disability, laying bare the value foundation and political and economic purpose of disability category assignment and social, professional, and community response. Her additional works, coauthored with Gilson, include The Human Experience (2007) and selected essays and papers. This scholarship applies legitimacy theory to understanding theories of human description and explanation and their purposive, political use in diverse helping-professional worlds.

    Stephen French Gilson is professor of social work and interdisciplinary disability studies and also holds an appointment as Senior Research Fellow at Ono Academic College, Research Institute for Health and Medical Professions in Kiryat Ono, Israel. He is a theorist and policy analyst who is best known for his work in disability, diversity, and health policy through the lens of legitimacy theory. With coauthor Elizabeth DePoy, Gilson developed Explanatory Legitimacy Theory, which analyzes how population group membership is assigned, is based on political purpose, and is met with formal responses that serve both intentionally and unintentionally to perpetuate segregation, economic status quo, and intergroup tension.

    Gilson has applied legitimacy theory to the analysis and enactment of health policy related to access to illness prevention information. Along with DePoy, Gilson has implemented his vision of socially just policy based on principles of full participation and access through the creation of a web portal that renders existing illness prevention information accessible to individuals across diversity category boundaries. His work has created an important theoretical advancement in disability and diversity studies and has been acknowledged as a new paradigm for Disability Studies by many scholars in the field. Most recently, Gilson, with coauthor DePoy, applies design theory and practice to the analysis of diversity categories, their membership, and their maintenance.

    His research interests and publications have focused on disability identity, experiences of domestic violence and women with disabilities, disability theory, disability as diversity, social justice, and health and disability policy and advocacy. Dr. Gilson is currently working on his ninth book, has contributed many chapters to edited collections, and has over 60 articles published in peer-reviewed journals. He is currently pursuing a collaborative research agenda to develop and test software that will provide full access to web and electronic information. Dr. Gilson presents his work locally, regionally, nationally, and internationally and has collaborative relationships with international scholars. In the service arena, Dr. Gilson is extremely active on university, local, national, and international committees, organizations, and concerns. His commitment to universal ideology as a means to promote social justice and equal opportunity guides his service work.

    His awards for scholarship include:

    • Senior Scholar Award. Society for Disability Studies (SDS), 2009.
    • Stanley Sue Distinguished Lecture Series, Diversity Lecture—“Now guess who is coming to the diversity dinner: Disability and beyond bodies and backgrounds.” University of Maine, Department of Psychology, 2009.
    • Multicultural Council Award for Leadership in Diversity. Association of University Centers on Disabilities (AUCD), 2008.
    • Faculty Fellowship Summer Institute in Israel. Society for Peace in the Middle East, Summer, 2008.
    • Allan Meyers Award for Scholarship in Disability, American Public Health Association, September, 2005.
    • Commission on the Role and Status of Women; Feminist Scholarship Award for 2000; E. P. Cramer, S. F. Gilson, and E. DePoy—“Experiences of Abuse and Service Needs of Abused Women with Disabilities.” Council on Social Work Education (CSWE), 2000.

    In Rethinking Disability (2004), and in his most recent work, Gilson, with coauthor DePoy, takes on the essentialist nature of current diversity categories with a particular focus on disability, laying bare the value foundation and political and economic purpose of disability category assignment and social, professional, and community response. His additional works, coauthored with DePoy, include The Human Experience (2007) and selected essays and papers. This scholarship applies legitimacy theory to understanding theories of human description and explanation and their purposive, political use in diverse helping-professional worlds. Dr. Gilson was elected Chair for the Disability Section for the American Public Health Association (2 year term to begin November 2009).


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