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by Gary L. Albrecht, Katherine D. Seelman and Michael Bury (Editors)
Sage, 2001
Review by Kristin Nelson, M.A. on Oct 11th 2005

The Handbook of Disability Studies

The Handbook of Disability Studies is a massive tome that breaks ground in many ways. It is the first attempt to bring together representative voices of major stakeholders on the subject of disability and to do so in a way that includes a vast range of perspectives and disciplines without losing focus on its central thesis. The central thesis is not so much a statement as it is a call for understanding and cooperation followed by an attempt to foster that understanding and cooperation. The field of disability studies is one that is still seeking to define itself. Tenuous borders are constantly redrawn. The best description of this landscape can be found in the acknowledgements section:

"The handbook represents the tensions between academic scholarship and the passions of activists; the different perspectives of disability studies and rehabilitation sciences; the uneasy coalition of disabled people with health professionals, technicians, and policymakers; and the value conflicts between aggressive capitalism, social welfare states, and the poor who struggle for survival in industrial and developing countries."

In other words, the study of disability requires all the tools and insights of all the fields of human inquiry. While eight hundred and fifty two pages may not be enough to contain all that, this book is a worthy beginning.

After an introduction that is a nuanced and engrossing education in itself regarding the formation of disability studies, the book is presented in three parts. Each thematic section contains eight to fourteen chapters written by contributors from diverse fields and diverse backgrounds, including people with disabilities.

Part one is a look at the shaping of disability studies as a field. Because the titles of the chapters are revealing and informative in and of themselves, they are reproduced here:

        An Institutional History of Disability

        Counting Disability

        Disability Definitions, Models, Classification Schemes and Applications

        Theorizing Disability

        Methodological Paradigms That Shape Disability Research

        Disability: An Interactive Person-Environment Social Creation

        Representation and Its Discontents: The Uneasy Home of Disability in Literature and Film

        Philosophical Issues in the Definition and Social Response to Disability

        Disability and the Sociology of the Body

        Intellectual Disabilities -- Quo Vadis?

        Disability, Bioethics, and Human Rights

        Disability Studies and Electronic Networking

Chapters in this section address issues that are both foundational and highly contentious. The first challenge facing the emerging field is one of language. The language used to express and represent disability will shape the concepts in this field, legitimizing certain inquiries while condemning others to be swept into dark corners. Many of these first chapters make claims regarding the way language should be used and the debates are anything but dry and academic. There is a rawness and passion evident in these early writings that belie the heaviness of the book and its uninspired title. While the writing is relevant and contemporary, the authors have chosen pieces that maintain philosophical rigor and many will one day stand as classics in this field.

Integral to this first chapter is an exploration of the differences between physical and mental disability. Historically, people with physical disabilities have been more readily accepted and accommodated in society. This differing acceptance influenced and continues to affect the way questions about disability have been framed and how communities value and support people with varying disabilities.

Part two is about the experience of disability and includes chapters from the perspectives of those with disabilities as well as those whose lives are impacted by disabilities in other ways, such as health care providers, family members and the community at large. The titles are again revealing:

  • Divided Understandings: The Social Experience of Disability
  • Mapping the Family: Disability Studies and the Exploration of Parental Response to Disability
  • Disability and Community: A Sociological Approach
  • Welfare States and Disabled People
  • Advocacy and Political Action
  • Health Care Professionals and Their Attitudes toward Decisions Affecting Disabled People
  • The Role of Social Networks in the Lives of Persons with Disabilities
  • Inclusion/Exclusion: An Analysis of Historical and Cultural Meanings

Themes in this section include the experience of disability, the restructuring of identity, self-empowerment and impediments to the full exercise of freedom for disabled people. Most of the interpretation and analysis of experience is done at the personal level. Although these are largely personal anecdotes or reflections on individual reactions, there is much to be learned from these stories. The authors have not only turned inward to reflect on their experiences they are also extending them outward and making claims about how people, individually and collectively, should respond to disability.

Finally, part three examines disability in context. Chapters include

  • Disability Culture: Assimilation or Inclusion?
  • Identity Politics, Disability and Culture
  • Making the Difference: Disability, Politics and Recognition
  • Disability Human Rights, Law, and Policy
  • The Political Economy of the Disability Marketplace
  • Disability and Health Policy: The Role of Markets in the Delivery of Health Services
  • Disability Benefit Programs: Can We Improve the Return-to-Work Record?
  • A Disability Studies Perspective on Employment Issues and Policies for Disabled People: An International View
  • Science and Technology Policy: Is Disability a Missing Factor?
  • Disability, Education and Inclusion: Cross-Cultural Issues and Dilemmas
  • Support Systems: The Interface between Individuals and Environments
  • The Relationship between Disabled People and Health and Welfare Professionals
  • Public Health Trends in Disability: Past, Present and Future
  • Disability in the Developing World

This chapter moves from experience of disability to the context in which disability exists. These are no longer theoretical questions about how much of disability is social construction, but rather an examination of the cold, hard facts of life. The level of analysis moves to the organizational and institutional structures that constitute the world in which people with disabilities must navigate. For people who have lived with disabilities from birth, these social entities define the world in which they live. For those who come to experience disability later in life, they sharply limit their existing worlds. As gloomy as the past and present states of disability awareness and accommodation are, this last chapter is not without a voice of hope and reason. The editors asked the authors to "gaze into the future" and identify issues that have not been sufficiently examined and point out ways in which interdisciplinary work can be done to address the critical questions.

Like any field of study, disability studies is a value-laden enterprise. What is particularly encouraging about this handbook is that the editors and authors are well aware that they are embracing and promoting certain values. In fact, many of those values are still being contested within the pages of this book. This makes for engaging reading that feels relevant and timely. Two clear values emerge: the duty to promote understanding and collaboration among the disparate fields engaged in disability studies and the responsibility to include disabled people as key participants in the formation of their own futures.

While the Handbook of Disability Studies appears intimidating at first glance, it is surprisingly accessible while maintaining a high level of scholarship. It will likely become one of those classics that are a must-read for all in the field.

 

2005 Kristin Nelson

 

Kristin Nelson is an assistant professor at Rush University Medical Center, Chicago, in the Department of Religion, Health and Human Values. She teaches medical students and residents as well as graduate students in the College of Health Sciences. She is also a clinical ethicist in the medical center.