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. 

Categories: Ethics, General