Self-Help Organizations of People with Disabilities in Asia

SELF-HELP ORGANIZATIONS OF PEOPLE WITH DISABILITIES IN ASIA

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SELF-HELP ORGANIZATIONS OF PEOPLE WITH DISABILITIES IN ASIA

Joseph K. F. Kwok, Raymond K. H. Chan, and W. T. Chan

AUBURN HOUSE Westport, Connecticut • London

Library of Congress Cataloging-in-Publication Data Kwok, Joseph K.F, 1950Self-help organizations of people with disabilities in Asia / Joseph K.F. Kwok, Raymond K.H. Chan, and W.T. Chan, p. cm. Includes bibliographical references and index. ISBN 0-86569-320-X (alk. paper) 1. Handicapped—Services for—Asia. 2. Self-help groups—Asia. I. Chan, Raymond K.H. II. Chan,W.T. III. Title. HV1559.A78K88 2002 362.4'0486—dc21 2001056070 British Library Cataloguing in Publication Data is available. Copyright © 2002 by Joseph K.F. Kwok, Raymond K.H. Chan, W.T. Chan All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 2001056070 ISBN: 0-86569-320-X First published in 2002 Auburn House, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.greenwood.com Printed in the United States of America

@T The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48-1984). 10

9 8 7 6 5 4 3 2 1

Contents

Tables and Figures vii Acknowledgments ix Abbreviations xi 1

Introduction Introduction 1 1

2 Self-Help Organizations of People with Disabilities 7 3 Organization and Leadership of SHOPs in Asia 21 4 SHOPs as Actors in Civil and Inclusive Society 45 5 Globalization of Disability Issues 61 6 SHOPs and Leaders in Mainland China 71 7 SHOPs and Leaders in Hong Kong 83 8 SHOPs and Leaders in Japan 93 9 SHOPs and Leaders in the Philippines 101 10 SHOPs and Leaders in Taiwan 109 11 SHOPs and Leaders in Thailand 117 12 SHOPs and Leaders in Vietnam 123 13 Theoretical Examination of SHOPs in Asia 131 Appendix: Sample of Self Administered Questionnaire 151 Bibliography 171 Index 181

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Tables and Figures

TABLES 2.1 6.1 7.1 8.1

An Overview of the Components of ICIDH Beta-2 Draft PWD in China by Type of Disability in 1996 GNP per Capita (Current Price), 1995-1999 A Comparison of Traditional Rehabilitation and Independent Living

14 74 85 99

FIGURES 13.1 13.2

Comparative Positions of SHOPs in Asia Theoretical Framework on Conceptual Dimensions of SHOPs

143 147

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Acknowledgments

The authors would like to acknowledge the inspirations and contributions from many self-help organizations of people with disabilities in Asia, without which the completion of this study was certainly not possible. The generous advice and assistance from many leaders in the field of disability in the region were equally essential in helping the authors to gather useful data and completing the interviews. The authors are grateful to City University of Hong Kong for a strategic research grant (project number 7000656) to support this study. Special thanks are also extended to our research assistants, Emily Fung and Lau Tat Chi.

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Abbreviations

APEC ASEAN BF CBR CDPF CforR DPT EOC ESCAP ESWF FESPICS GO HNDC ICIDH IDDP IL ILC ILO INGO IYDP ISHOP ISPO KAMPI

Asia-Pacific Economic Cooperation Association of Southeast Asian Nations Bright Future for People with Disabilities community-based rehabilitation China Disabled Persons' Federation commissioner for rehabilitation Disabled People Thailand Equal Opportunities Commission (Hong Kong) Economic and Social Commission for Asia and the Pacific Eden Social Welfare Foundation (Taiwan) Far East and South Pacific Games for the Disabled governmental organization Hospital for Neurologically Disabled Children International Classification of Impairments, Disabilities, and Handicaps International Day of Disabled Persons independent living independent living center International Labor Organization international nongovernmental organization International Year of Disabled Persons international self-help organization of people with disabilities International Society for Prosthetics and Orthotics Katipunan ng Maykapansanan sa Pilipinas, Inc.

xii

JCD JCILC JICA LWOD MOLISA NAFTA NCWDP NGO PAPID PTU PWD RAHK RI RICAP RNN SHG SHO SHOP STAC UN UNESCAP UNICEF WHO WTO

Abbreviations Japan Council on Disability Japan Council on Independent Living Centers Japan International Cooperation Agency League of Welfare Organizations of the Disabled Ministry of Labor, War Invalids and Social Affairs (Vietnam) North America Free Trade Agreement National Council for the Welfare of Disabled Person nongovernmental organization Parents Association for Persons with Intellectual Disability Danish National Society of Polio and Accident Victims people with disabilities Rehabilitation Alliance Hong Kong Rehabilitation International ESCAP Regional Inter-Agency Committee for Asia and the Pacific regional NGO network for the promotion of the Asian and Pacific Decade self-help groups self-help organizations self-help organization of people with disabilities simulation and therapeutic activity centers United Nations UN Economic and Social Commission for Asia and the Pacific United Nations Children Fund World Health Organization World Trade Organization

1 Introduction

The term "self-help organizations of people with disabilities" (SHOPs) is used to differentiate them from professional and service organizations, which are referred to as organizations for people with disabilities. SHOPs were given a major role in United Nations (UN) forums when "full equality and participation" were adopted as the theme of the International Year of Disabled Persons (IYDP), 1981 (UN, 1981). The Disabled People's International (DPI) was founded in the same year, in order to give people with disabilities a "voice of our own." The UN World Program of Action made a special appeal to UN member states to "establish direct contacts with such organizations and provide channels for them to influence government policies and decisions in all areas that concern them. Member states should give the necessary financial support to organizations of disabled persons for this purpose" (UN, 1982: para. 93). Twelve years later, in 1993, member governments of the United Nations' Economic and Social Commission for Asia and the Pacific (ESCAP) unanimously adopted the Agenda for Action for Asian and Pacific Decade of Disabled Persons, 1993-2002, which included self-help organizations as 1 of the 12 policy categories requiring priority action. The Agenda for Action recommends 10 measures under this category, including policy, program, and resource support for self-help organizations to pursue targets of social integration, economic independence, leadership development, self-advocacy, self-help, formation of national forum, monitoring, and research on rehabilitation services and devices (ESCAP, 1993: 23-25; para. 11). In spite of these sustained UN efforts, there has been little research in Asia on the nature and extent of the impact on self-help organizations at the community, national, and regional levels. Self-help groups show a wide range of differences. Some are formed around a single disability type; typical examples are groups of the visually, hearing-, and physically impaired. Other emerging groups in the re-

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Self-Help Organizations of People with Disabilities in Asia

gion are those formed by people with visceral disabilities. Indeed, SHOPs are not homogeneous groups (UN, 1981). While SHOPs have different problems that demand different solutions, they have been recognized by the UN and its specialist organizations to have important roles to play in three major program initiatives of the UN, that is, primary public health (WHO, 1986), community-based rehabilitation (Helander, 1992), and vocational rehabilitation (ILO, 1985; Kwok, 1994). Robinson (1981), coordinator of the World Health Organization's (WHO) study on self-help groups concerned with health problems, and WHO (WHO, 1986) both recognize that self-help groups have an important role in health promotion, which consists of self-care, mutual aid, and the creation of a healthy environment. This view is echoed by Hedrick et al. (1992). Some SHOPs have also been reported to undertake a wide range of services and take the lead in promoting the independent living movement (Estrella, 1991; KAMPI, 1992; Pongpaew, 1989; Shiraishi, 1989). There is, therefore, a need to study the impact of principles, concepts, and guidelines as promulgated by the UN concerning self-help groups in the contexts of historical, cultural, social, economic, and political perspectives. This research need has also been recognized in the World Program of Action, where research institutes are encouraged to undertake health and social service research (UN, 1982: section D, paras. 184-193). Apparently, Western countries have responded positively to this UN appeal, and research studies on self-help groups and professional practice have gathered momentum since the mid-1980s. It has been found that the growth of self-help groups in Western nations is a response to changes in family and neighborhood roles in providing care, democratic populist movements, lethal lifestyles, and limited professional service. A shift in the human services paradigm has been identified in these groups toward peer support, education, network approach, pro-adaptive capacity, delivery system articulation, and increased knowledge (Katz et al., 1992). Two major issues have emerged from studies in the West (Froland, 1981; Gottlieb, 1981; Mitchell & Hurley, 1981; Adams, 1990:29-30; St. Amand, 1992). First, from the perspective of the self-helpers, is whether these self-helpers can claim to provide effective help, making better access to services, widening the opportunity of choice and redistribution of resources, and assuming a professional, if not a paraprofessional, status. Second, from the perspective of professionals and policymakers, is whether empowerment of these self-helpers would help them to complement professional practice and lead to cost-saving for the formal care system. This book presents the findings from investigating the micro- and macrocharacteristics of SHOPs from seven territories and countries in Asia, which have a wide range of differences, how these SHOPs interact with governmental and nongovernmental organizations (NGOs) in the society, and the dynamics in the context of the globalization process concerning disability issues. This crosssociety study, therefore, aims also to identify useful theoretical frameworks to inform policy and research development in this important area.

Introduction

3

RESEARCH METHODOLOGY The subjects of the present investigation are SHOPs, which may be defined operationally as those organizations, whose main policy-making bodies are required by their constitution to have the majority of their membership positions held by people with disabilities. The present investigation covers also organizations formed by family carers and relatives of people with disabilities. The following countries/territories are included in the study: Mainland China, Hong Kong, Japan, the Philippines, Taiwan, Thailand, and Vietnam. These countries/territories are considered to represent a cross-section, geographically, demographically, economically, and culturally, in the East and Southeast Asian region. The samples chosen cover SHOPs of varying characteristics and include those countries that have already achieved a high level of provision of rehabilitation services as well as those still facing the daunting task of achieving provision of comprehensive rehabilitation by the end of the Asian and Pacific Decade of Disabled Persons, 1993-2002. The period covered starts from 1981 (IYDP), when self-help organizations began to attract the attention of international and national governmental organizations (GOs), and continues to 2000. This research uses case studies through in-depth interviews, documentary review and archival search, and a self-administered questionnaire survey. Documentary search includes an intensive search in the World Wide Web databases. Case Studies SHOPs for the present study are selected according to the following criteria: 1. Scope of operation: territory-wide (e.g., Hong Kong, and provincial-level self-help organizations in China) or nationwide. SHOPs operating on a local basis are not selected. 2. Year of formation: on or before 1990. 3. International and regional networking: formal (full membership status) or informal (correspondence, information, and professional exchanges) linkages.

For Mainland China, the SHOP chosen for study is the China Disabled Persons' Federation (CDPF), the national federation of disabled persons with staterecognized disabilities, which has branches all over the country and operates as a pseudogovernmental organization. For Japan, the SHOP chosen is the Independent Living Centre, which takes the independent living movement as its major mission and has affiliation with other similar SHOPs in the form of a national council. For Taiwan, the SHOP chosen is the League of Welfare Organizations of the Disabled (LWOD), a territory-wide organization covering all disability groups and functioning also as a national federation of individual, single-disability organizations. For Thailand, the SHOP chosen is Disabled People Thailand (DPT), a na-

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Self-Help Organizations of People with Disabilities in Asia

tional federation of various single-disability groups. For Vietnam, the SHOP chosen is Bright Future for People with Disabilities (BF), which operates mainly in Hanoi but has extensive connections with the international disability movement, as well as effective access to traditional national organizations concerning disabilities. For Hong Kong, the SHOP chosen is Rehabilitation Alliance Hong Kong (RAHK), a federation of disabled persons covering all disabilities. For the Philippines, the SHOP chosen is Katipunan ng Maykapansanan sa Pilipinas, Inc. (KAMPI), which is a national organization of disabled persons covering all disabilities. All of the selected SHOPs have membership status in, and/or networking information about, international NGOs, including Rehabilitation International (RI), Disabled Peoples' International (DPI), World Blind Union, World Federation of Deaf, and Inclusion International. Documentary and archival searches were carried out primarily through libraries and the Internet from Hong Kong and through field visits. Publications of the sampled self-help organizations were collected by local research partners, with translations where necessary. Investigators also conducted in-depth interviews of the central and branch leadership of the sampled self-help organizations. Self-Administered Questionnaire Survey questionnaires were administered to leaders of sampled self-help organizations toward the second half of the investigation. Fifty completed questionnaires were collected from each target area, resulting in a total of 300 completed questionnaires. The selected leaders either were currently serving or had served within the last three years in these organizations. The subjects were selected by purposeful and snowball sampling methods through the assistance of local research partners. The questionnaires were translated into the local language, and qualitative feedback was translated back to English for analyses. The Hong Kong Chinese version also needed adaptation for use in Mainland China and Taiwan, as these three places have slightly different language patterns in addressing issues concerning disabilities. Local research partners whose qualifications and knowledge in the subject area were considered good enough to give a reliable outcome conducted the translations. As the samples were not selected randomly, the findings should be interpreted with caution, however, the findings are perhaps from the first study of its kind conducted among similar subjects with the present research focus. The findings, therefore, are considered useful in exploring the dynamics of SHOPs, their leaders, and the societies. The self-administered questionnaire (see Appendix) has six sections: 1. general membership 2. organization and leadership 3. relationship with partner organizations

Introduction

5

4. relationship with society at large 5. globalization approach to disability as a human rights issue and the SHOP as a disability rights advocate 6. respondents' personal information Section one collects information on general membership and has 10 questions. Respondents were asked to give their perception of the membership in the following areas: gender and age distribution; types of disability; relative financial situation; most disadvantaged groups and their situation; effectiveness in changing the general public's way of treating SHOP members; SHOP'S help in bringing about an understanding of self-help philosophy; factors contributing to mutual help, self-help, and empowerment of members. Section two, on organization and leadership, has 52 questions. The following areas are covered: the means whereby members are involved in establishing goals and agree on policies and strategies; communication among members; fundraising; decision-making style and its efficiency and effectiveness; frequency and duration of committee meetings and how meetings are organized; systems of accountability and their effectiveness; interaction among leaders and between them and members; the ways of dealing with internal and external complaints; leadership development and learning opportunities; taking valued roles in GOs and NGOs; paid organizers and their roles; paid elected members and their roles; the level of regard for the leaders by GOs and NGOs; attitude toward, and handling of, deviant members; complaints on inequitable treatment of nonmembers; activities that SHOP is most equipped to deliver to members. Section three is on the relationship with partner organizations and has 25 questions. The following areas are covered: support from a special partner; nature of relationship with GOs and NGOs; perception of traditional rehabilitation and welfare organizations and advocacy for disabled people's participation; advocacy for reallocation of government and society resources in favor of SHOP to deliver services to its members; image of SHOP in the eyes of NGOs, GOs, the general public, and other disadvantaged groups; strategies and skills used in collaborating with GOs and NGOs; strategies used in seeking alliances and coalitions in advocacy action on focused disability issues; strategies used in seeking alliances and coalitions in advocacy action on general welfare issues; strategies used in seeking alliances and coalitions in advocacy action on general public concerned disability issues. Section four is on the relationship with society at large and has four questions. The following areas are covered: strategies to seek social changes in the context of the cultural systems; strategies to seek social changes in the context of the political systems; strategies to seek social changes in the context of the legal systems; experience in taking part in social development programs. Section five asks respondents about the globalization approach to disability as a human rights issue and SHOP as a disability rights advocate. This section has nine

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Self-Help Organizations of People with Disabilities in Asia

questions and covers the following areas: knowledge about the UN initiatives and the globalization process in disability as a human rights issue; participation in NGO (e.g., DPI, RI) activities internationally; participation in NGO activities on the Asian and Pacific region level; SHOP'S influence as adviser and advocate on UN initiatives concerning disability; SHOP'S influence as adviser and advocate on regional initiatives concerning disability Section six asks respondents for personal information. This section has 26 questions and covers the following areas: age, sex, education, professional qualifications, occupation, and nature of disability; years served as leaders of SHOP; perception of the nature of their SHOP; service in government advisory committees; service in the decision-making boards of international bodies; service in UN committees; undertaking of consultancy project in own country and at the international level; additional formal qualifications most needed; kind of skills most preferred to become more effective as a leader; kind of personal qualities most needed to become a better leader of SHOP.

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Self-Help Organizations of People with Disabilities

HISTORY OF SELF-HELP ORGANIZATIONS OF PEOPLE WITH DISABILITIES SHOPs have to be studied in both historical and modern contexts. In the very broad sense, they may be as old as human civilization. This study, therefore, begins with an examination of the historical development of mutual aid groups and self-help groups in general. SHOPs were established all over the world long before their recognition and support from the government. Self-help can be seen as a "natural human force" that involves both the social and economic needs of a community and its members. In time of illness, personal crisis, and change of life situation, when original helping networks and modes are marginal, inadequate, and unavailable, resources are then generated through an interpersonal interactive process. These resources can be generated in family and kin, neighbors, and even strangers. It is a process of creation: empathic emotional and mutual peer support, experiential information, sharing network, new culture, new ideology, and new identity. Such resources existed in communities long before the era of industrialization and the new information millennium. Self-help groups, on the one hand, can be regarded as forms of basic natural community resources reacting to changes in personal life in any society. On the other hand, they are also an alternative state of action to complement the social service system in welfare states. To some extent, the formation and increase of self-help groups are a response to dissatisfaction with professional services. In the twentieth century, self-help focused on individual challenges, and such self-help groups saw a marked development in the Western world, particularly in the United States. The formation of Alcoholics Anonymous in 1935 marked the modern era of self-help in American history. For the immediate post-World War II years, Katz (1993) reported that in the late 1940s, the parents of children with

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Self-Help Organizations of People with Disabilities in Asia

handicaps and illness formed their own support groups to call public and professional attention to their children's neglected welfare and needs. In late 1960s and 1970s, women's self-help advocacy movements were more visible (Riessman & Carroll, 1995). Self-help covered a wide range of practices in these groups, ranging from consciousness-raising groups, to a health movement, to large-scale social and political issues. The movements of women's rights, gay rights, and disability rights then became the cornerstones of the present-day self-help advocacy movement. In 1973, the advocacy movement for people with different degrees of mental handicaps began. The "People First" movement was for deinstitutionalization and learning to live in the community. In 1979, the National Self-Help Clearinghouse was organized. This clearinghouse added new dimensions to the coverage of self-help groups. The groups then provided information, referrals, training, research, public education, and networking of various selfhelp groups with professionals. In the twenty-first century, self-help groups not only are gaining solid ground on the geographical, local, and national level, but also receive global and political attention. SHOPs are listed on the agenda of United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN, 1994: Rule 18). SHOPs are no longer informal, natural resources of the community but are regarded as a formal channel for state government to actualize the inclusive approach for the needs and welfare of persons with disabilities. The development of self-help organizations and/or groups of people with disabilities has increased all over the world since the proclamation of the IYDP in 1981. It is a response to the year's theme: full participation and equal opportunities for persons with disabilities. This growth has been a positive move for the disability community advocating their rights. In 1993, the UN (1994) has adopted a set of 22 Standard Rules for actualizing the theme in action. It is an action recommendation to every country to help persons with disabilities acquire full citizenship and live fully in an inclusive society. The UN requests every member country to adopt the Standard Rules in its thinking and implementation of policy concerning disability issues. Rule 18 states that it is the responsibility of the state to support the formation and development of organizations of persons with disabilities. MULTIDIMENSIONAL FRAMEWORK ON THE STUDY OF SHOPS SHOP as a concept and as a social entity has received growing attention and the interest of an increasing number of sectors from the national to the international level. Few studies, however, have explored the multidimensional nature of this concept. SHOPs can be analyzed in terms of their common and varying characteristics. Their common characteristics, found in many cultures and geographic boundaries, include the following: (1) SHOPs are led or governed by members with disabilities, including their family carers and relatives; (2) their members share a common problem or experience or a common challenge; and (3) they aim to promote mutual benefit in the form of free reciprocal help, experiential under-

Self-Help Organizations of People with Disabilities

9

standing, self-determination, and self-empowerment (Borkman & Parisi, 1995: 402; Powell, 1987; Schopler & Galinsky, 1995). SHOPs' varying characteristics are found in many areas, for example; (1) the degree of involvement of nondisabled members such as professionals, GOs, and NGOs; (2) bureaucratic and hierarchical structure; (3) membership size and coverage, such as disability types and geographical areas; (4) benefits to members and nonmembers, service provision and type, complexity of program, and philosophy; (5) role of advocacy concerning disability issues; and (6) alliances with other advocacy groups in civic issues and social change orientations (Powell, 1987; Schopler & Galinsky, 1995). In real life, not all characteristics of self-help can be found in any one SHOP. KEY CONCEPTUAL DIMENSIONS IN UNDERSTANDING SHOPS Academic interest in self-help groups and self-help organizations has spread over a wide range of conceptual dimensions under the influence of different theoretical perspectives or paradigms. SHOPs' development over the past two decades, particularly since UNIYDP, 1981, has been influenced heavily by the world's changing attitude toward defining the term "disability." The popular use of the term "self-help" is also a result of its effective application to group dynamics in professional as well as advocacy activities. Self-Help From a psychological perspective of looking at individual self-help or mutual help among members of a group, it is a voluntary activity unique to the individuals concerned. Being helpless, segregated, and belittled is often experienced by service recipients (or helpees) when they consult professionals from the health and welfare fields. The use of experiential knowledge and peer mentoring has been found to be a powerful process in helping the helpee to transfer to a competent and compassionate helper. The mutually convertible helper-helpee growth process can maximize its benefit in the helping process in self-help communities. At the organizational level, SHOPs' self-help differs from individualized self-help in the mainstream society, in which there is a belief that professionals "acting at a distance" (Rose & Miller, 1992) can help in understanding and correcting the self and achieving self-modification and "improvement" (Rirnke, 2000). SHOPs' mutual help, to some extent, is to achieve liberation from manipulation by professionals, particularly in the case of the people with disabilities who cannot voice their needs and demands (e.g., those with learning difficulties). The self-help ethos as characterized by Riessman (1987: ix) is "anti-big," "anti-bureaucratic," and "anti-impersonality." A second dimension of the ethos is the reaffirmation of basic traditions of community, neighborhood, spiritual values, and self-reliance. The process of empowerment, though a modern life concept, can be realized in all forms of participatory themes, as in networking, shared leader-

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Self-Help Organizations of People with Disabilities in Asia

ship, peer processes, and mutual aid to regain self competence. Therefore, the essence of self-help lies very much in the inner strength not only of the individual but also of the group, the community, and even the nation. By giving such breadth to the concept, the study of self-help groups becomes a way of understanding human interaction. Along this perspective, self-help in the modern era is considered to have qualities similar to those of traditional communities, namely, a locus for the development of culture and identity, a community enhancing social support functions, and a community empowering individual skills and services. The "self is simply expanded from an individual to a community dimension. SHOPs, especially in developing nations, can best be studied, according to the definition of Lavoie, Borkman, and Gidron (1994: 3). They define self-help broadly as the "recruitment and mobilization of peers in an informal and nonhierarchical setting and sharing of their common experience." These characteristics are considered basic building blocks for almost all forms of self-help in all nations and culture. This definition recognizes self-help groups as a form of "specialized communities of interest and belief that can transcend geographical boundaries. With the increasing institutionalization of SHOPs in the political and servicing systems, using Kurtz's working definition for the present study would give an advantage in providing a comprehensive perspective: A self-help group is a supportive, educational, usually change-oriented mutual-aid group that addresses a single life problem or condition shared by all members. Its purpose may be personal or societal change or both, achieved through the use of ideologies for dealing with a situation. Its leadership is indigenous to the group's members; participation and contributions are voluntary—it charges no fees. Professionals rarely have an active role in the group's activities, unless they participate as members. Boundaries include all that qualify for membership by having the problem, the situation, or an identity in common with other members. Meetings are structured and task-oriented and use specific methods of help for the basic problem or condition. Local groups are usually relatively autonomous from their national headquarters. (Kurtz, 1997: 4)

Disability Over the past decades, there have been heated debates on the language of disability, and its definitions reflect very much a changing philosophy and conception toward the term "disability." The following brief definitions are identified from the literature: medical, social, political, and cultural definitions of disability (Gilson & Depoy, 2000). Medical Model ofDisability. The medical approach places emphasis on the biological origin of disability and defines disabled people as less able than those who are nondisabled (Shakespeare & Watson, 1997; Mackelprang & Salsgiver, 1999). Based on this approach, the focus of rehabilitation services is to seek the individual's recovery and/or adaptation.

Self-Help Organizations of People with Disabilities

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Social Model of Disability. In the social model, the value dimension of disability is given a neutral definition. Disability is taken as a different human condition and not necessarily undesirable or in need of remediation (Shakespeare & Watson, 1997). The cause of functional incapacity is considered an environment with barriers (Gleeson, 1997). Therefore, service goals are targeted at removal of social and environmental barriers. Political Model of Disability. This model deals with power and resources, in which disability is seen as a condition affecting one's working capacity and economic status. Disabled people who have low working capacity and make few economic contributions are barred from those privileges normally given to those who make greater economic contributions. Cultural Definition of Disability. This approach suggests that individuals who claim themselves as disabled belong to a unique group that shares common experiences, objectives and rules, and language and discourse (Gilson & Depoy, 2000). Disability becomes a symbol of group identity (Mackelprang & Salsgiver, 1999). The group also becomes the advocate of individual members' voices. Culture is a complex concept. In Primitive Cultures (1871), Tylor defined culture as "that complex whole which includes knowledge, belief, art, law, morals, custom, and any other capabilities and habits acquired by man [sic] as a member of society" (Kuper, 1999:56). Within a mainstream culture, subcultures are meaningful to people who claim to belong to that subculture. The culture of a SHOP may be said to be a kind of subculture. A SHOP'S culture is characterized by a sense of common experiences and identity. The sense of common experiences is often mentioned as based on dealing with disability conditions, and the sense of identity is based on solidarity as result of struggle and resistance whose goal is self-empowerment to remove societal barriers (Peters, 2000). The sense of commonness is, however, not clear, as the term "disability" covers a very wide range of human conditions, therefore, a culture definition of SHOP recognizes multiple background issues (Vernon, 1999: 394). SHOP'S Relative Position in the Community Viewing disability as a form of culture has significant advantages over previous, alternative views. Culture places disability within the human experience, drawing parallels among disabled people and all others. So while culture distinguishes, it also informs groups about themselves through comparison with other cultures. What becomes particularly important about this last point is the potential for disabled people to draw on the experience of other marginalized groups as a basis for defining and establishing their preferred relative position in the mainstream culture. Moreover, similar to other disempowered cultural groups (e.g., women, old people, remote rural inhabitants), disabled individuals confront discrimination in such marginalized subcultures (Charlton, 1998). While oppression and discrimination in any case are unfortunate, this commonality serves to inform social change efforts and guide the disability community to adjust their relative position

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Self-Help Organizations of People with Disabilities in Asia

in the society. Defining disability as a culture places disabled communities into the larger narrative of multiculturalism and brings theory, research, and social action from multiculturalism to bear on understanding disability as an essential element of personhood and on positioning the disability community relative to others (Ingstad & Whyte, 1995). Issues Concerning Cross-Cultural and Cross-National Study of SHOPs Overgeneralization of self-help groups across cultures and nations can be risky. Scholars and researchers have put tremendous effort into theorizing major universal qualities of most self-help groups. The universal characteristics are the uniqueness of experiential knowledge, a community of members with new identity and new culture, shared emotions and mutual support, the empowering nature of generating new resources and new skills, and the shift of role from helpee to helper. Despite these common characteristics, individual groups differ. The differential factors as explored by Lavoie, Borkman, and Gidron (1994) include the life crisis, problem, or situation that calls people together and the culture and/or social background or status of people who are members of the national political and economic structure and ideology in which they exist. These particularities of cultural, political, and economic characteristics that differentiate one group from another have yet to be explored. Different nations have different definitions of the relationship between individual citizens and the state. The definition is reflected through the organization of different legal, political, and economic frameworks. Individual nations have very different ideologies and caring systems for looking after citizens in different life situations. The culture of a nation is thus reflected by the legal and political construct, the social and economic system, and ways in which people identify and cope with their stressful life situation. Some countries may value self-sufficiency that makes their citizens take full responsibility for their life challenges. They are encouraged to tap into their own resources within their kinship, neighborhood, or informal association. Other countries promote a universal responsibility of society to take care of the welfare of citizens, who can therefore rely on society's public and formal service system. In the course of cross-cultural and national studies, both the particular and universal characteristics of the self-help groups have to be addressed. The normative notion of self-help in developed nations may not necessarily be applicable to developing nations. Where some cultures recognize and cherish experiential expertise and support public expressions of deeply felt emotions, self-help groups may be regarded as normative activities and movements. In those nations where professionalism and the state complicates citizens' life situations, it is likely that self-help will be marginalized and treated as a secondary form of social services. To the extent that political, economical, social, and cultural influences are obvious, the uniqueness of different structural and operational characteristics of selfhelp groups in different nations has to be noted.

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WHO ICIDH Beta-2 Draft WHO published the version of the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) in 1980. While ICIDH-1980 for the first time emphasized environmental factors in causing handicapping conditions, it is still criticized by SHOPs as being more inclined to the medical model in defining disability. Coupled with expressed needs in member organizations of WHO for a better classification system to support policy and research, as well as the needs of disabled people, WHO started a long process to update the ICIDH. In 1999, WHO (1999) released the ICIDH Beta-2 Draft version for field-testing all over the world. The final version was approved at the Fifty-Fourth World Health Assembly (WHO, 1999; 2001). The ICIDH Beta-2 Draft attempts to find a balance between the two extreme medical and social models, and confines itself to health conditions affecting people, to give a "biopsychosocial" model aiming to achieve a synthesis of views on different dimensions of health at the biological, individual, and social levels. According to WHO, The medical model views disability as a personal problem, directly caused by disease, trauma or other health condition, which requires medical care provided in the form of individual treatment by professionals. Management of the disability is aimed at cure or the individual's adjustment and behavior change. Medical care is viewed as the main issue, and at the political level the principal response is that of modifying or reforming health care policy. The social model of disability, on the other hand, sees the issue mainly as a socially created problem, and principally as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment. Hence the management of the problem requires social action, and it is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life. The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights. Disability becomes, in short, a political issue. (1999: para 5.2) WHO (1999: 14-15) offers a tabulation (see Table 2.1) of key conceptual components of the "biopsychosocial" model. ICIDH Beta-2 Draft has moved a long way from ICIDH (WHO, 1980). It goes even further to state that the classification does not apply to functioning and disability conditions alone but to all human conditions that are health-related. ICIDH Beta-2 Draft does not receive a lot of discussion among SHOPs in the Asian region, partly because it is a complex classification system and partly because it does not really mean to assist SHOPs but rather policymakers and professionals. The value of studying SHOPs is that it gives us the pathway to understand the relationship between individuals, peer groups, community, government, and nations. It may give us a source for educating our children and give the following generations a chance for equal opportunity for fellowship and growth.

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Table 2.1 An Overview of the Components of ICIDH Beta-2 Draft Body Functions & Structures Level of Functioning

Body (body parts)

Activities

Participation

Individual (person as a whole)

Society (life situations)

Contextual Factors Environmental factors (external influence on functioning) + Personal factors (internal influence on functioning)

Characteristics

Body function Body structure

Involvement in Performance of individual's life situations activities

Feature of the physical, social, and attitudinal world + Attributes of the person

Positive aspect (functioning)

Functional and structural integrity

Activity

Participation

Facilitators

Negative aspect (disability)

Impairment

Activity limitation

Participation restriction

Barriers/ hindrances

Assistance

Subjective (underdevelopment) satisfaction (underdevelopment)

Qualifiers: First qualifier

Second qualifier

Uniform qualifier: extent or magnitude Localization

Source: WHO, 1999.

THEORETICAL FRAMEWORK OF STUDY OF SHOPS Membership Characteristics Self-help groups (SHGs) and self-help organizations (SHOs) have been used interchangeably in many contexts. However, SHGs have a relatively few members, usually recruited from the same locality or similar service organizations, and usually exist under a sponsoring, traditional service organization. Their members are relatively more homogeneous in terms of their commonly shared disability characteristics or problems. Membership participation is purely voluntary and not under any organizational obligations. Members relationships are more personal and carry a high level of interaction. SHOs have a relatively large membership. Their membership recruitment is not confined to clients of any traditional service organizations or a specific locality.

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Their members, while classified as disabled persons, display a high degree of diversity in terms of disability characteristics, economic characteristics, personal backgrounds, and challenges. Other than the possible structural differences discussed earlier, SHGs and SHOs may also differ in the degree of professional involvement. Some SHGs may have a relatively high degree of professional involvement from their sponsoring organizations, which offer services or treatment to their members. Otherwise, SHGs and SHOs share similar characteristics in being autonomous in their structure, sharing similar problems or challenges, sharing similar support in information (including experiential knowledge) and mutual help, and advocating self-determination, equality, and disability rights. Members cherish a sense of empowerment, which gives them a community feeling, a new identity, and a new culture, as well as generating new resources and new skills and the shift of role from helpee to helper (Bowen, 1994: 345; Hedrick, et al., 1992: 3-55). This study focuses on SHOs for people with disabilities. Organization and Leadership A key characteristic of SHOPs is that people with disabilities own them. This characteristic is normally written into their organizations' rules and regulations, particularly in membership criteria and leadership structures. Otherwise, SHOPs share organizational characteristics similar to those of other traditional service organizations. If their government administration permits, they register as NGOs just like other registered NGOs in the country, including characteristics of bureaucratization and professionalization (professionals openly have a major, sometimes dominant voice in decision making). Frequently, the organizations become national, followed by the development of branch or regional offices (Katz, 1993: 63). SHOPs may sometimes have difficulty balancing their roles as advocate and a service provider. SHOPs' services start with the premise of challenging ineffective NGOs and GOs. At the same time, however, they are increasingly dependent upon the government as well as the private sector to support their services. This poses a paradox for self-help. Within a SHOP, tensions have been reported between organization and administration requirements and the basis of self-help, which is highly personal. When SHOPs grow, they have to bear the consequences of becoming a bureaucratic organization characterized by hierarchy, impersonal rules, and a division of labor that emphasizes technical competence. Membership in general cherishes the sense of self-help, self-enlightening, and empowerment, with interactions highly personal and competence based on experience and seniority. Therefore, they have a feeling against the bureaucratic leadership (Riessman & Carol 1, 1995: 6). The threat may also be expressed in the form of tension found between lay leaders of SHOPs and the professionals whom they employ, in areas of policy formulation, administration, and volunteering and staff functions. Such opposing themes may pose threats to the leadership and long-term development of the organization.

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Self-Help Organizations of People with Disabilities in Asia Relationship with Partnership Organizations

SHOPs have a relatively young history as compared to other traditional NGOs. Their formation is usually supported by a sponsor or a catalyst, which may be a key traditional NGO or GO in the field of disability. The relationship between SHOPs and their traditional key partner is, however, a mix of acceptance and challenges, and complementary mission and contrary expectations, as well as alliances and oppositions. Mutual help among members of SHOPs is considered by traditional professional bodies as an important asset in treatment and therefore should be supported and encouraged. Role models among the membership provide vivid examples of success in awareness-raising and empowerment through mutual help of members. As SHOPs develop into multipurpose service organizations, however, and generate services similar to those of traditional NGOs and GOs, tensions may emerge as an issue between these two parties as they aim for a collaborative relationship. They become competitive players for power and resources in the field of disability as well as in national development programs. Moreover, SHOPs advocate an approach that has long been thought to be antibureaucratic, antiprofessional, antiintellectual, and competitive with conventional organizations. How SHOPs perceive and manage the tensions may pose threats for both parties in a collaborative relationship. The relationship between those SHOPs with "a weak voice" and professionals has attracted a great deal of attention (e.g., the situation of people with intellectual challenges). The disabled population has diverse characteristics. One of the largest groups is people with intellectual challenges. The size of the group would even be bigger if their carers and family members were included. How much they feel that they share a common identity with other disabled groups is a question yet to be answered. In international disability forums, they would take part in a larger coalition to advocate for the rights of disabled people and to promote inclusion. Yet separate events, such as the Special Olympics, signify the uniqueness of their characteristics and identity. At the grassroots level, people with intellectual challenges forming self-help groups are rarely found in the region. Perhaps Hong Kong and Japan are first among the countries to see the existence of such groups. In Hong Kong this special SHOP has been supported by a committed professional in this field who works as a volunteer to the extent of quitting her full-time job. This might also be a reflection of the inherent differences between service providers and people with learning difficulties. To be SHOPs and advocate for their own agenda, SHOPs have first to deal with the service providers, who are more powerful in literally all senses of the word. People First is the only organization run and controlled by people with learning difficulties. People First Workers (London) says self-advocacy includes speaking up for yourself, standing up for your rights, making choices, being independent, and taking responsibility for yourself (People First Workers, 1996a, b). Self-advocates (Dawson & Palmer, 1993) suggest that in order to be an effective

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advocate, one needs to resist practices that oppress you, by challenging people in power, having the right to challenge others and be angry, and challenging carers when the need arises. SHOPs have to deal with the labeling process from service providers, not to mention the mainstream society. It is not a surprise that people with intellectual challenges have had a poor image of themselves. They are told to accept what is "realistic" rather than become empowered to deal with mainstream barriers. SHOPs' self-advocacy cannot be a liberating experience if its process and contents are being managed and controlled by the same people who have the power to oppress those who have been labeled as having intellectual challenges. Relationship with the Society at Large Comparative studies among SHOPs in Asia help us identify dynamics of other forces in their society. These dynamics have to be analyzed in the contexts of political, social, and cultural systems. For example, it is useful to ask whether a SHOP will develop into a movement if the culture in which the SHOP exists supports public expressions of deeply felt emotions, or a SHOP is considered a marginal form of social services if professionalism and governmental organizations that determine people's life situations dominate the culture. These particularities of cultural, political, and economic characteristics differentiating one country from another have yet to be explored. A new trend in the literature is to study SHOPs from the theoretical perspectives of civil society, which refers to those organizations, usually NGOs, that are not part, of or controlled by, the formal institutions of the government. Borkman and Parisi (1995) note that SHOPs have been researched from an individualistic psychological framework, for the most part, and few studies focus on the roles that SHOPs play in a civil society. SHOPs could be studied as civic leadership development and as a "new movement" with values and goals similar to those of other social movements, so as to understand better their roles in creating a more caring society. Similarly, the negative aspects of SHOPs that deviate from a civil society should also be studied. Another group in the literature studies self-help issues from sociological perspectives using current social movement theories, which concern identity, community, and lifestyles, other than the classic concern of economic issues and class struggle (Melucci, 1995). The disabled people's self-help movement is closer to a social movement than to a collective action because it possesses an ideology that seeks to change culture, and social structure, and redistribute power and resources within a society; a sense of common purpose and identity; an organization structure; and an action plan (Katz, 1993: 104). In Asia, it is useful to test what strategies are effective in which political and cultural systems. The following questions to have theoretical interests for further deliberations:

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Self-Help Organizations of People with Disabilities in Asia 1. Will a collaborative route be more effective for NGOs in a highly participatory, democratic culture? 2. Will a complementary strategy be more effective in a civil society characterized by a diversity of power centers? 3. Will a confrontational approach by NGOs be best in a multiparty electoral system composed of many power centers? 4. Will a consciousness-raising strategy work best within a state that protects political and civil rights? Politics of Identity and Difference—SHOPs' Relative Position in the Civil Society

Groups of common identity, while supporting within-group solidarity, serve also to isolate themselves from groups of different identity. Groups of diverse cultural groups, even though with a similar political agenda, may become competitors (Goldberg, 1994; Walzer, 1994). Humphrey (1999) discusses sustenance and effectiveness of SHOPs as actors in the civil society in social movement issues along the perspectives of the politics of identity and differences and the politics of coalition. Such issues are evident if SHOPs have to work on similar issues advocated by other marginalized groups (e.g., in areas of housing, health, and employment) or under a similar institutional framework (e.g., within a government policy area or disability discrimination legislation, as in the case of Hong Kong). SHOPs, while adopting a disability identity, have to seek a common approach with groups of other identities. The Politics of Coalition. Under major public issues, identity politics has to give way to a politics of coalition and to achieve a common political statement, which usually has to be broad enough to cover the demands of most, if not all, groups of different identities. Such politics of coalition is feasible if there is a commonly perceived target or a strong common statement. The politics of coalition is also an issue within SHOPs if they intend to represent cross-disability groups. Here the issue of identity is more crucial than issues of differences under one common public issue. In the disability movement, whether at national or international levels, it is not uncommon to find both tension and coalition among single-disability SHOPs and between single-disability SHOPs and cross-disability SHOPs. Another area of tension is reported between SHOPs and parents' and relatives' organizations of people with psychiatric disability and intellectual challenges. The Politics of Diversity. The politics of diversity applies when SHOPs have to deal with the issue of enhancing a strong sense of identity while at the same time including more disability groups (e.g., people with chronic illness). To apply such politics, SHOP leadership must learn how to prioritize resources to support certain categories of membership from certain geographical locations. A further dilemma is to allocate resources to meet the demands of current membership as against a mission to reach out to the most disadvantaged sectors in the society (e.g., children with disabilities, girls and women with disabilities, poor people with disabilities in remote rural areas).

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The Politics of Language. Language as a tool in defining disability is cited as both advancing a positive attitude toward disabled people and marginalizing them (Linton, 1998). The disability community in the West has been assertive in how disabled people should be labeled or termed (Anspach, 1979; Fine & Asch, 1988; Oliver, 1996; Shakespeare, 1996; Shapiro, 1994; Scotch, 1989; Zola, 1993). The English language has succeeded in finding terms enhancing bonding within the disability community and counteracting prejudicial language (Heumann, 1993). Similar efforts are needed in other languages in which terms such as impairment, disability and handicap require translation (e.g., in the Chinese language). Social Movement, Inclusion, and Exclusion Branfield (1999), representing the exclusive view, argues that the disability movement must exclude nondisabled people but include all disabled groups. The disability movement must consist of, be led by and represent disabled people. "Our history is a history of domination by non disabled people. Why should we now want to give them our movement?" (Branfield, 1999:401). This view is based on the theory that SHOPs are a direct response to the institutionalized discrimination that disabled people face. In challenging these discriminatory conditions, SHOPs have to become centers of highly innovative practice, using development work, service delivery, campaigning, information provision, and training to bring about social change (Germon, 1999; Hill-Colins, 1990: 110). On the other hand, those who argue for an inclusive view say that differentiation between the disabled and the nondisabled is not clear-cut, and in many instances is temporary, and in some cases is far less than permanent (e.g., people with psychiatric disabilities and people suffering chronic illnesses). There appear to be more differences among the disabled population than similarities. Furthermore, there is no clear indication that trust among disabled groups is higher than between disabled groups and mainstream society. It is not unique to define the relationship between a disabled group and society as the oppressed and the oppressor, as such an approach is also commonly adopted by other disempowering and disadvantaged, marginalized groups in the society (Duckett, 1998). Globalization, Disability as a Human Right, and SHOPs as Rights Advocates The proclamation of the IYDP in 1981, the adoption of the UN Decade of Disabled Persons, 1983-1992, and the World Program of Action Concerning Disabled Persons (UN, 1983) have signified a major shift in the attitude of society toward disability. The traditional attitude, which still prevails in both developed and developing countries, regards people with disabilities as helpless dependents, as invalids, as subjects in need of pity who bring misfortune to the family and to the society. People with disabilities are separated and isolated from the mainstream society for caring and training.

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Self-Help Organizations of People with Disabilities in Asia

The theme and purpose of the IYDP were "full participation and equality." It recognized and advocated the rights of persons with disabilities to enjoy equal opportunities and participate fully in all spheres of life in society. Different activities were developed to create a greater awareness of the problems and needs of persons with disabilities all over the world. Since then, it has been noted that social attitude is one of the major obstacles preventing full participation and equal opportunities for persons with disabilities in society. As summarized by Lindqvist (1997), the UN Decade has made some achievements, but the international disability community was not satisfied with the slow progress and limited outcome during the UN Decade. The international disability community, therefore, requested the UN to assume a stronger leadership role in the development of the well-being for persons with disabilities. As a result, a set of 22 Standard Rules on the Equalization of Opportunities for Persons with Disabilities was adopted in 1993. As has been stated by Lindqvist (1997), the UN Standard Rules are a policy document, a "code of conduct" for governments in the disability field. There are a guide to change the thinking and acting of government, to adopt an inclusive approach to disability. The Standard Rules have three sections, plus an overall introduction, a preamble, and a description of the monitoring system. The three sections are preconditions for participation, target areas for equal participation, and implementation measures. The Standard Rules take a strong stance that it is the responsibility of states to take appropriate measures and actions to empower persons with disabilities and to create an inclusive and accessible society for all. Rule 18 is about organizations of persons with disabilities and recommends that states should recognize the right of the SHOPs to represent their groups at national, regional, and local levels. States should encourage and support the formation and development of such groups. It also states in Point 4: "As instruments of self-help, organizations of persons with disabilities provide and promote opportunities for the development of skills in various fields, mutual support among members and information sharing." The Standard Rules recognize the function of SHOPs in self-help, educating their members on new skills, and fostering mutual support and sharing of information. The globalization process in the disability field is accelerating as a result of self-help movements of international NGOs both as self-advocates and advocates, as well as the UN's initiative in creating a common code of conduct for national governments to follow. Reviewing the UN World Program of Action, Despouy, special rapporteur of the UN Sub-Commission on Prevention of Discrimination and Protection of Minorities, states that "the leading role played by those organizations [SHOPs] in decision-making, policy selection and defense of their own human rights is one of the most outstanding features of the Decade. The recognition of disabled persons as experts in their own affairs is relatively recent and coincides, not by accident, with the growing attention being paid to the topic by the international community" (Despouy, 1993: 40). There is still much to be studied, however, on how the globalization process interacts with local and national organizations.

3

Organization and Leadership of SHOPs in Asia

This chapter discusses organizational and leadership characteristics of major SHOPs in the areas under study, namely, Mainland China, Hong Kong, Japan, the Philippines, Taiwan, Thailand, and Vietnam. The selected SHOPs are presented with an analysis of how they were established and organized and how their leaders lead their SHOPs to achieve national and international recognition. By providing such an overview of the selected major SHOPs in these societies, a brief historical description of the origin and growth of SHOPs is given. DEVELOPMENT OF ORGANIZATIONS Mainland China SHOPs existed in Mainland China even before 1949, the founding year of the People's Republic of China. They were primarily single-disability SHOPs and were relatively inactive. The central government became more concerned about disability issues only after the Cultural Revolution and when the late statesman Deng Xiaoping became firmly installed as the supreme leader of the country. His son, Deng Pufang, first founded the China Foundation for Rehabilitation, around 1982, during the United Nations International Year of Disabled Persons, 1981. Deng Pufang was a victim of the Cultural Revolution and became paralyzed and a wheelchair user. Since he became the leader of the disability community in China, he has made good use of his contacts and influence in high political circles in bringing about a landmark change in China's policy toward disabled people. He also became active in international affairs during China's early years of opening up to the rest of the world. An international nongovernmental organization (INGO), RI, under the then-president Professor Sir Harry S. Y. Fang of Hong

22

Self-Help Organizations of People with Disabilities in Asia

Kong, presented the RI Charter for the 1980s to the prime minister of China in 1983. The minister of civil affairs, upon the invitation of Professor Sir Harry, attended the 1984 RI World Congress. Subsequently, Deng Pufang founded CDPF in 1988, which later became a full member of RI. CDPF has a statutory status, formally recognized by the State Council as the special national organization dealing with disability concerns for the entire country. Officially, CDPF is the unified national organization of and for persons with various categories of disabilities, affirmed by law and ratified by the State Council (CDPF, 1998a). CDPF has branches all over the country. At the grassroots level, membership consists of individual disabled people. At the national level, CDPF provides for organizational membership. All other national organizations concerning disabled people have been absorbed into CDPF. These include China Association of the Blind, China Association of the Deaf, China Association of the Physically Disabled, China Fraternity for the Mentally Retarded and Disordered, China Rehabilitation Research Centre, China Rehabilitation Research Centre for Deaf Children, Beijing Blind Massage Hospital, Huaxia Publishing House, "The Disabled in China" Editorial Board, Kangyi Audio-Video Publishing House, China Rehabilitation Association of the Disabled, China Society of Blind Massage (CDPF, 1998a). Central Organization. CDPF's central organizational structure is divided into three major components to serve policy-making, executive, and supervision functions. Its highest policy-making body is the National Congress, which meets once every five years, and the Presidium, which is, in turn, elected by the National Congress. The executive body is the Executive Committee, the chairperson of which is elected by the Presidium and endorsed by the State Council. The Advisory Committee, with over two-thirds of its members people with disabilities, serves as the supervisory and consultative part of the central body. CDPF has taken a progressive step to ensure that it is governed by people with disabilities. The constitutional revision of CDPF in 1998 shows the following significant changes: (1) the proportion of national delegates with disabilities elected to the National Congress increased from "not less than half to "more than half," and (2) the proportion of delegates with disabilities elected to the Presidium increased from "not less than half to "more than half" Furthermore, membership of the Executive Committee changed from "should include people with disabilities" to "should have a significant proportion of people with disabilities" (CDPF, 1998b). As the national organization of all categories of disabled people, CDPF's constitution has provision for five special coordinating committees, one each for people with visual impairment, hearing and speech impairment, physical impairment, mental retardation, and psychiatric impairment. All members of these committees are people with disabilities or their family members. These committees serve the purpose of articulating their special needs and developing and monitoring appropriate services to meet these needs.

Organization and Leadership of SHOPs in Asia

23

Grassroots Branches. Since its founding in 1988, massive community organizational work has been undertaken at various levels across the country. By 1993, the number of branches established at the provincial level was 60; at the municipal level, 399; and at the village, township, and street level, 46,900. The total number of personnel of all branches, excluding the central body, reached 23,440 (Secretariat of Co-ordinating Committee Concerning Disabilities, State Council, 1993). From observation, CDPF branches at the grassroots level have varying modes of operation and function, depending mainly on the interests of the local government and the socioeconomic conditions of the locality. The characteristics of antielite, antibureaucratic focus found in SHOPs of other countries (Riessman, 1987) are seldom reported in China. There have, however, been informal, though occasional, observations by visitors to big cities of sporadic social action by disabled groups. CDPF in Public Sector, Social, and Economic Reforms. Since the 1990s, social and economic reforms in China have accelerated and brought about severe challenges to organizations like CDPF. The adverse impacts of the economic reform on unskilled workers and the low salaries of workers have made the state recognize the importance of social welfare provisioning for maintaining social stability and political authority. Specifically, the government is introducing new welfare systems focused on pension reform, community service relief or assistance, and family care, which involves a shift in social welfare responsibilities to local governments, market services, and nongovernment organization and the strengthening of informal community and family self-provisioning. The process has caused various tensions surrounding the roles of the state, the enterprise, new social organizations, the community, the family and the individual in social welfare reform (Croll, 1999). As a result, the CDPF has to cope with growing demands for support from its constituencies, in which the majority are the poor and marginalized in the society. Further, CDPF will have to follow the state's policy of "small government and big society" (Tong, 1998). Specifically, the CDPF has introduced three major measures. First, CDPF has to follow similar downsizing procedures as other government departments by trimming its central personnel and operate with less dependence on government funding. Second, while it has to maintain branches at all levels from the local to the provincial, it has fewer resources to support such branches, which are expected to work more closely with local governments. In this regard, in order to have effective local branches, CDPF is very concerned about grooming young leadership. Third, CDPF has more flexibility than a government department in adopting innovative fund-raising and public education campaigns. For example, since 1998, while the constitution of CDPF still stipulates that CDPF is a national body approved by the State Council under the law of the country, it does not stipulate that CDPF branches should be under the leadership of local government. CDPF branches have to seek the best approaches to work with governmental bodies, nongovernmental bodies (including professional associa-

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Self-Help Organizations of People with Disabilities in Asia

tions and welfare organizations), and the private sector. It is a major challenge for CDPF to deal with these new relationships, which are mixed situations of acceptance and challenge, complementary mission and contrary expectation, alliance and opposition. The impact of such changes on the effectiveness of its advocacy work at the central level and organizational work at the grassroots level has yet to be assessed. Internally, CDPF branches have to work out systems to establish principles and work targets recognized by partnership organizations; improve decision-making structures supported by its constituents and governmental partners; raise funds; improve transparency of its internal and external accountability; and maintain the vitality of the organization and continued improvement to meet environmental changes. In spite of its increasing NGO characteristics, the nature of CDPF can still be described as an amoeba structure, changing its forms easily. On the one hand, it is part of the state and receives very substantial support in terms of finance and personnel, with a similar personnel policy as that of government. On the other hand, it also claims to be an NGO. It is a member of DPI and RI as well as other INGO networks. Its formal function within government is like that of a central government department, and it serves as a secretariat for a central, senior level of a crossministry committee on disability policy formulation. In this regard as a NGO in China, it is certainly not the kind of NGO (or social organization) covered by the 1998 regulations on social organizations. Within the central government, the State Council recognizes the CDPF as the expert organization on all issues concerning disability. CDPF works as a consultant as well as service provider to disabled people within mainstream central government development programs, such as the poverty-alleviation program and the development of the northwest region. In UN forums, CDPF is always a member of the China delegation to provide input on issues concerning disability. CDPF members have been rather effective in making the China delegation more informed and more active in UN deliberations on both mainstream issues and specialized issues concerning disability. CDPF has a unique development within the history of China. It was first set up by the Ministry of Civil Affairs, which acted as its sponsor. Now it has an elevated status and has successfully negotiated with the state for a special position in Government. It now has direct access to other ministries. For example, in May 1999 on the National Day for Disabled People, CDPF hosted a National Seminar on Access, and a number of ministers were present (e.g., the minister for construction). In the World NGO Summit hosted by CDPF in March 2000 in Beijing (CDPF, 2000), the minister for foreign affairs was present to give China's support to the summit and to take sponsorship for the proposal for an international convention on the rights of disabled people. CDPF is expecting some major organizational changes in the new millennium. From what has been observed, it is fiilly aware of the seriousness of the challenges and is making both short-term and long-term strategic plans to deal with such challenges.

Organization and Leadership of SHOPs in Asia

25

Hong Kong Hong Kong has a relatively large number of SHOPs. They differ in terms of disability group coverage, history of formation, relationship with traditional GOs and NGOs, focus of activity, and relationship with professional bodies. Those with a longer history, as in other countries, are mainly single-disability groups, for example, the Hong Kong Association of the Blind (Tsui, 1998). Since the IYDP, a number of new SHOPs have been formed, including SHOPs covering all disability categories, people with chronic illness, parents' groups, people with psychiatric disability, and people with intellectual challenges (or mental retardation). The IYDP, or similar movements in the developing world, has triggered such groups. In a way, Hong Kong's close interaction with the world has often exposed it to new initiatives and new ideas. It also has a tradition to test such new ideas through the initiatives of many traditional NGOs as well as grassroots organizations. All SHOPs share similar characteristics. They are members of the Joint Council for the Physically and Mentally Disabled, which is the central coordinating body funded by government for all NGOs concerning disability. The Joint Council, however, is independent in terms of legal status. Its elected management has full autonomy to pursue its own organizational objectives, and its paid staff are all non-civil servant. Other characteristics of Hong Kong SHOPs include their dual concern with advocacy and services for their members. Mutual help and self-help are emphasized. Some are involved in entrepreneurial income-generating activities. In terms of their size and complexity, however, they are all relatively small compared to traditional NGOs. To some extent, they are not fully recognized as equal in the eyes of the government for getting government funding to run government-recognized services. While not written down as policy, main funding bodies, including the Community Chest of Hong Kong, consider that there is a potential conflict of interest between the elected management and the provision of services to their own members, because the elected officials are equally eligible to receive such services. In the case of Community Chest, only recently has it recognized SHOPs as its members to receive its funding, provided that the elected management has members who are nondisabled people. Such a practice has been challenged severely by SHOPs. Generally, the government has been effective in appointing leaders of SHOPs to special advisory committees concerning disability but rather passive in appointing them to mainstream government bodies. SHOPs' leaders, on the other hand, have been active in taking part in international and regional exchanges through nongovernment funding. In the new millennium, like other NGOs in Hong Kong, SHOPs are facing severe challenges brought about by the regional financial crises and government health and welfare reform (Kwok, 1999). SHOPs have to compete with traditional NGOs for nongovernment funding and with an increasing number of civic bodies for community resources. From observation, SHOPs in Hong Kong are not ready to map out long-term strategies to deal with these challenges.

26

Self-Help Organizations of People with Disabilities in Asia Japan

In Japan, Uemura (1999), an academic of Japan College of Social Work, based on official reports, estimates that about 3.5 %, or 4,130,000, of the population are people with disabilities, including 3,176,500 people with physical disability, 413,000 people with intellectual disability, and 1,540,000 people with psychiatric disability. Japan has a variety of disabled persons' organizations. The oldest ones include Japan Federation of the Deaf (founded in 1947), Japan Federation of the Blind (founded in 1948), and Japan Federation of Organizations of Physically Disabled Persons (founded in 1958). The parents' movement in the late 1950s has led to the formation of nationwide umbrella organizations such as Japan Association of/for People with Mental Retardation (1952, now renamed Inclusion Japan Japan Association of/for People with Intellectual Disabilities) and the Japan League for the Mentally Retarded (founded in 1996). Since the 1960s, there has been a mushrooming of parents' organizations and disabled persons' organizations. In 1981, the Japan Council for International Year of Disabled Persons was formed. This organization was later renamed Japan Council on Disability (JCD), which now comprises of 70 organizations of and for people with disabilities. To take the national networking movement a step further, Japan Federation of Organizations of Disabled Persons, Japanese Society for Rehabilitation of Disabled Persons, and Japan Council of Social Welfare formed the Council for the Promotion of New Decade of Disabled Persons, which has become an umbrella for most disability-related organizations in Japan. This federation-like network has made a major contribution to the promotion of UN ESCAP to adopt the Asian and Pacific Decade of Disabled Persons, 1993-2002. The impact of all these disability movements was witnessed in Japan's revision to the Disabled Persons' Fundamental Law (1970, Law No. 84, major revision in 1993) (Japanese Society for Rehabilitation of Disabled Persons, 1997). The law, which is administered by the prime minister's office, covers major areas such as formulation of basic plans for disabled persons, awareness-raising, and public relations (e.g., Disabled Persons' Day, regional conferences). According to the observation of a well-known leader in the field of disability, the IYDP 1981 saw a close collaboration of leaders of disabled persons of the United States and Japan in promoting independent living through public seminars organized all over Japan. These advocates conducted negotiations with the Japanese government to promote independent living. In 1984, the National Council for Establishment of Independent Living Centers of Disabled Persons was inaugurated. In 1991, the first general assembly of Japan Council on Independent Living Centers (JCILC) was held and attended by 10 independent living centers (ILCs) from all over the country. As a council, the JCILC does not provide direct services to people with disabilities (PWD). It provides services for ILCs and the public. To support member ILCs, it recruits and trains their staff, providing technical knowhow in making manuals, setting up seminars, arranging lectures, and accepting and educating trainees from overseas for independent living. For the general public, it promotes independent living (IL), educates the public, conducts research,

Organization and Leadership of SHOPs in Asia

27

makes proposals to government, advocates, and is a liaison between member centers and funding bodies and other organizations and international exchange. As of August 1998, JCILC (1998) had 79 affiliated ILCs from all over Japan. In order to be eligible for membership, the centers have to fulfill the following criteria: 1. The executive director of the ILC should be a person with disability. 2. More than half of the decision-making committee members should be people with disability. 3. The ILC should offer advocacy services and information referral as core services plus more than two services from the following list: attendant referral, peer counseling, housing service, independent living skills training. 4. Recipients should receive services regardless of the nature of their disability. The JCILC is a coalition of ILCs, and their relationship is not a superior-subordinate relationship. Each functions almost independently, and each seeks funds from local and other sources. Tachikawa Center for Independent Living is a typical example of the independent living movement in Japan. Its history could be traced back to the social action by a group of disabled people demanding an accessible railway station in the year 1981, the first of its kind by disabled people in the history of Tachikawa (Takahashi, 1999). The same group of disabled people extended their concerns to independent living and housing needs in subsequent years. Other groups of disabled people were also formed to promote independent living, to move people out of institutions, and to promote safe living at home. Finally, there emerged a strong urge among these groups to become the principal service provider for independent living, which ultimately led to the formation of the Tachikawa Centre for Independent Living. As of August 1999, the center had five departments: administration, transportation services, personal assistant services, information and research, and living support projects. It had 11 permanent staff and around 8 part-time staff, plus three specialists. The center is managed by a steering committee of seven members, and five of them are persons with disabilities. Generally speaking, an ILC provides personal assistance on a regular and emergency basis, accessible transport, information service, counseling (with an emphasis on peer counseling), and lending of assistive devices. Recipients of such services also include people with intellectual challenges living in the community. The ILC raises funds through charges for services, and membership dues, as well as subsidies from central and local governments. While acting as service providers, the SHOPs seek government recognition for their status and uniqueness in providing services to disabled people. Some centers have special local government support. One typical example is that their counseling program receives local government funding, even when their peer counselors are all disabled people with special training provided by their own organization. Such counselors are distinguished from those professional counselors trained by formal institutes. Although their formal educational qualifications may differ, the

28

Self-Help Organizations of People with Disabilities in Asia

peer counselors are able to get similar treatment from government in terms of pay and other recognition. The SHOPs have clear, nongovernmental characteristics. Their legal status is the same as for other NGOs in the country; they have no special, privileged status in the government and receive no special funding for their maintenance and operation; officials are elected from among their members; and their paid staff, though few in number, are all non-civil servant and are appointed by the elected administration. The Special Nonprofit Organization Law, which Japan passed in 1998, points to a shift in state-civil society relations in a nation long characterized as a "strong state." Removing many impediments that civil society organizations faced, the law significantly expands the scope of groups that qualify for legal status and curtails stifling bureaucratic supervision. It is also part of broader changes—including an increase in Diet members' bills, a move toward a Freedom of Information Act, decentralization, and deregulation—in Japanese society and politics, all striking at centralized bureaucratic power. SHOPs in Japan will have to cope with the rapid changes in civil society in the new millennium as result of the passing of the new law. The Philippines The National Council for the Welfare of Disabled Persons (NCWDP) is a central governmental body charged with the responsibilities of policy formulation and monitoring and service delivery. It works directly with relevant GOs and NGOs, including SHOPs in the Philippines. NCWDP recognizes that there are a large number of big and small SHOPs in the Philippines, and some large SHOPs with chapters (or branches) in the country do not always have the capacity to reach out to members in remote villages and islands. Also national SHOPs do not like to be subsumed under another SHOP of the country, and each of them claims a voice of its own and retains its own leadership. NCWDP in its work with SHOPs also encounters communication and interaction problems and notes that roundtable talks among SHOPs are not always fruitful to arrive at consensus strategies. Therefore, NCWDP does not recognize one national SHOP as the one leading national SHOP in the country. NCWDP currently recognizes around 12 national SHOPs and supports them to organize PWD in their specialized areas. NCWDP provides them with some funding support and leadership and organization skills training. NCWDP issues certificates to those SHOPs that it recognizes. There has been, however, a slight change in NCWDP policy since the KAMPI acquired government recognition as a qualified service provider. KAMPI, which is covered by the present study, has since received more support from NCWDP than have other SHOPs. For example, for the National Week of Disabled Persons in July 1997, KAMPI was the only SHOP asked by NCWDP to conduct a program. NCWDP encountered a major issue in the election year 1998, which was how to encourage SHOPs and all PWD to register as voters, so as to achieve more participation for the sectoral representative election in the Congress. The number of sec-

Organization and Leadership of SHOPs in Asia

29

toral representatives was five, and the distribution was among women, elderly, disabled people, and so on, according to the number of registered voters. NCWDP worried that PWD do not register enthusiastically, and even if they registered, they might not identify themselves as PWD. Also people with mental retardation or people with similar intellectual challenges may not be able to register. KAMPI is a cross-disability national organization established in 1990 with an initial membership of 11 chapters or affiliated organizations from seven provinces. By 1999, KAMPI had 215 chapters from 58 provinces. It is now widely recognized by both public and private sectors as the cross-disability SHOP in Philippines. Major projects of KAMPI include: 1. Simulation and therapeutic activity centers (STAC) (six centers to support 20 satellite centers in the country with funding assistance from the Danish National Society of Polio and Accident Victims [PTU], and Bata-bata Foundation of Japan); 2. Provision of assistive devices and surgery, and foreign funding assistance; 3. Livelihood assistance grants; 4. Forums on UN Standard Rules and a national survey on implementation of the Standard Rules in the country; 5. Computer training scholarship; 6. Free clinics with volunteer medical personnel; 7. Formation of the National Federation of STAC Parents Associations of the Philippines in 1998; 8. Production of resource material, (e.g., manuals on the care of children with disabilities); and

9. Typhoon relief operations. Ampo (1999) notes that the growth of self-help groups in the Philippines is a matter not just of numbers but also of national coverage and organizational capacity. For example, KAMPI chapters are found in remote rural areas and islands all over the country. These chapters have, over the years, enhanced their capacity for service provision to their members, and some of them are financially self-reliant through community resources mobilization and income-generation activities. Ampo (1999) notes further that the sharp increase in KAMPI chapters is due to two factors: competition for scarce public resources, and government's preferential policy supporting PWD who are members of self-help groups or cooperatives. KAMPI is the first and only national federation of all persons with disabilities in the Philippines. Since its establishment, it has taken a positive attitude toward all other single-disability national SHOPs. Gradually, it has accepted other SHOPs into its membership. Its Governing Board has 15 members elected from its provincial chapters and national organizations of single-disability SHOPs (e.g., the blind, the deaf, the cerebral palsied). KAMPI has four levels of hierarchical structure; the provincial presidents of KAMPI are elected from presidents at the municipal level. KAMPI headquarters accredits its local chapters and disabled persons' organiza-

30

Self-Help Organizations of People with Disabilities in Asia

tions at the local level and recommends them to local governments for support. KAMPI receives foreign donations to run services for PWD. The Project for Disabled Children (Breaking the Barrier), Danish-funded has made a significant impact in the country. With support from overseas aids, KAMPI has gained central government recognition via the director of social welfare and NCWDP. KAMPI was active for the sectoral representative election in the general election held 11 May, 1998. While KAMPI's primary focus is in advocacy and leadership training, it has also expanded into service provision. It receives substantial overseas development aids and is also recognized by the government as eligible for government funding in providing services. It aims to cover all disability groups, and most members are disabled people. The membership size has increased significantly over the past decade, covering even remote, large islands. It has clear nongovernmental characteristics (i.e., its legal status is the same as that of other NGOs in the country); it has no special, and privileged status in the government; it receives no special funding for its maintenance and operation; its officials are by election from among its members; its paid staff, though few in number, are all non-civil servant and are appointed by its elected administration. It was formed around the UN IYDP and is a member of the Disabled People's International. Some local branches of KAMPI are as active as KAMPI on the national scene. One notable example is its branch in Cebu, which has played an active advocacy role in barrier-free environment and employment issues, as well as been involved in local government elections with a focus on disability issues. It works closely with the city mayor in promoting rehabilitation issues. It also obtains foreign aid in running a workshop and a hostel for disabled people. Taiwan The SHOP in Taiwan selected for discussion and analysis is the League of Welfare Organizations of the Disabled (LWOD). The league contains individual membership as well as national single-disability groups. Members also include nondisabled advocates who are leaders in the rehabilitation, disability, and religious fields. Its membership size has increased significantly over the years, and by 2000 it had over 208 member organizations from most parts of the territory. The objectives of the league include monitoring public policy and advocacy, with particular attention on legislative issues. It tries to minimize direct service to members, except providing staff and leadership training for various local chapters. Its staff in headquarters numbers around 10. The league holds a general meeting once every two years. Under the general meeting is the Executive Board, which deals with policy and administration of the organization. Executive Board members are selected by a quota system, with at least one elected member from one national single-disability organization, and the rest are elected according to the size of the disability group. Its board members, therefore, include different disability groups, such as people with hearing impairment, visual

Organization and Leadership of SHOPs in Asia

31

impairment, parents of PWD, psychiatric disability, and physical disabilities. Its annual expenditure is met by membership fees (2%), fund-raising (68%), and government subsidy (30%). It runs its own fund-raising, and gets government funding for some of its membership programs. It has clear nongovernmental characteristics; that is, its legal status is the same as for other NGOs in the country; it has no special, privileged status in the government; it receives no special funding for its maintenance and operation; its officials are by election from among its members; its paid staff, though few in number, are all non-civil servants and are appointed by its elected administration. The league was formed when Taiwan rescinded its martial law in 1989, giving rise to a mushrooming of grassroots organizations. It has been observed that democratization in Taiwan has led to multi-party politics and a proliferation and coalition of business groups and other interest groups (Tang & Tang, 1999). During these early years, there was a rapid increase of disabled groups over the country. Another notable example, which shows the strength of the parents' movement, is the Parents Association for Persons with Intellectual Disablilty (PAPID), which was founded in 1992 by delegates of parents' associations all over Taiwan. By 1998, PAPID had 35 local chapters and a total of 15,000 family members (Chen, 1998: 160-161). The League of Welfare Organizations of Disabled Persons was the result of massive demonstrations in 1987 and 1988 concerning college entrance discrimination against disabled candidates as well as closing of lotteries for fund allocation to disabled people. The demonstrations united over 68 organizations concerning disabilities. In 1989, an alliance of over 70 organizations was formed to petition government for a major revision to laws for the protection of disabled persons, and in the same year the league was founded. The league has been an active advocate and maintained a close relationship with the Congress and political parties. It also joined hands with other civic groups such as those concerning women, children, old people, and indigenous people to advocate for more resource allocation (Tso, 1995). Generally, the disability movement in Taiwan can be classified into three phases. Phase 1 refers to the period between 1987 and 1989, the year of the establishment of the Action Committee for the Revision of the Laws for the Protection of Disabled Persons. Phase 1 is characterized by individual grassroots organizations' social action. Phase 2 refers to the unofficial coalition of the majority of disabled peoples' organizations and concerned organizations between 1989 and 1990, the active years of the Action Committee. Phase 3 refers to the founding of the league in May 1989 and beyond. The league was initially an attempt to coordinate all such groups to form an alliance to advocate for the rights and welfare of disabled people. The league is a product of a bottom-up approach in grassroots development to become a national organization. One major revision to the law provides for disabled people's participation in government decision-making bodies. The Laws for the Protection of Disabled Persons, Revised 1997 (Ministry of Internal Affairs, 1999:1-14, Article 7) stipulates that a Committee for the Protection of

32

Self-Help Organizations of People with Disabilities in Asia

Disabled Persons should be established under each level of government organizations charged with a responsibility to implement the law, and disabled people and/or their guardians should be represented. Thailand Disabled People Thailand (DPT), the main self-help organization in Thailand, is a coalition structure, comprising other national, single-disability groups, and has provincial-type branches all over the country. The central body functions as a central advocacy body, and as liaison with overseas development organizations and counterparts and provides mainly leadership training to local disability groups. Local branches also have individual membership. The total number of provincial branches is around 20. The total number of individual membership is insignificant compared to the disabled population. It aims to cover all disability groups, and most members are disabled people. It has clear nongovernmental characteristics. Its legal status is the same as for other NGOs in the country. It has no special, privileged status in the government and receives no special funding for its maintenance and operation. Its officials are elected from among its members. Its paid staff, though few in number, are all non-civil servants and appointed by its elected administration. It is a member of the National Council on Social Welfare, the central coordinating body heavily influenced by the government, being most of the time governed by retired senior civil servants. The Thai SHOP was formed around the UN IYDP and is a member of the DPI. The Thai SHOP studied by the present research was conceived in 1981, the UN IYDP, which inspired senior disabled leaders to form a national assembly of all disabled persons based on principles of self-help to change attitude, not charity. Its founding president motivated graduates of deaf and blind schools to form alumni or associations of single-disability groups, respectively. In 1982 an association of physically handicapped was formed. In 1983, an ad hoc preparatory meeting was held among associations of parents of children with mental retardation and autistic persons, deaf persons, blind persons, and physically handicapped persons. Subsequently, the founding meeting of the national assembly of DPT was held in October 1983. The first assembly was held in Ching Mai. Narong Patibatsarakich (1998), a former senator and the first president of DPT, organized the first assembly by first forming a local organizing committee in Ching Mai with participation of local government officers and local charities (such as Rotary Clubs). The city mayor was a friend of Narong and offered great help, as the mayor was deeply impressed by Narong's spirit and efforts in spite of his severe physical challenges. Narong had since been reelected the president of the National Assembly for 10 years. Narong continued to receive support from his mayor friend, who later became director general of social welfare in the central government. In the first assembly, delegates had to pay for their own traveling expenses. Since then the office of the national secretariat has been in the home of Narong, who served on a voluntary capacity and also contributed his own resources. Other assembly mem-

Organization and Leadership of SHOPs in Asia

33

bers are following his model. In the 1990s, when Thailand's new constitution provided for sectoral representatives to its Senate, Narong won a seat in the welfare sector (1995-1999). DPT aims to encourage SHOPs at the local level, to empower SHOPs, to provide leadership training, to participate in policymaking, and to partner with GOs and NGOs. DPT has its National Assembly as the highest authority structure. Under the National Assembly, there are parents' associations of disabled children (e.g., mental retardation, autism), the Association of Physically Handicapped, which has about 24 provincial chapters, the Association of Deaf, which has regional coordination chapters, and the Association of Blind, with regional coordination chapters. Each association holds its own assembly every two years. The National Assembly of Associations meets once every two years, and the meeting venue rotates around the four regions of the country (northwest, northeast, central, and south). Regarding its membership structure, each association organizes up to 75 local branches in line with the local political administrative structure. Each local branch has to be a registered body recognized by the local government as well as by the National Assembly. The total is 300 (i.e., 75 x 4) local branches of all four disability categories. In 1999, the National Assembly had only 15 groups. In a locality where there are no groups, individuals with suitable qualifications are appointed as local representatives. The National Assembly, the highest policy-making body of the DPT, has five elected representatives from each national association, giving a total of 20 representatives; and one elected representative of each national association from each region (northwest, northeast, central, and south), giving a total of 16 representatives (the maximum number is 40). The president of the Governing Board is elected from among the representatives, and the vice-presidents are presidents of each national association. Their term of office is two years. DPT is financed in the following manner. Its secretariat work is mainly carried out by the national leaders as volunteers. For its First National Assembly Day in 1985, DPT received an assistance of US$5,000 from DPI, which has since supported its activities for some time. In each National Assembly a local organizing committee carries out fund-raising to support the assembly costs, while delegates pay their own traveling costs. The National Assembly carried out major fund-raising campaigns in 1993. Through the support of Army television (which was made possible through Narong's personal network), they were given a free broadcast. With the help of television and movie stars, they organized weekly talk shows, and received call-ins. In that year, DPT raised 2 million baht and became better known to the people and other major organizations. The Goodwill Industries of Thailand, since moving into its new headquarters building, has allowed DPT to use one floor as its office. The national associations of disabled persons are given lottery quotas to raise money. The Thailand lotteries are very popular and sold through many outlets, for money-making and not for money-making purposes. NGOs, such as the disabled persons' national associations, are granted a quota and get a commission from selling the lottery tickets. The national associations can sell the lottery tick-

34

Self-Help Organizations of People with Disabilities in Asia

ets by themselves or contract them out to companies to do the selling and collect the cash commission from the contractors. Furthermore, since the adoption of the Thailand Rehabilitation Law, DPT has been recognized as a self-help organization, eligible to apply for funding from the newly set up Rehabilitation Fund formed by collecting employment quota levies from businesses and industries, plus government contributions. According to government policy, each national association is entitled to 200,000 baht for their assembly meeting, traveling accommodations, and so on. DPT has different paid staff for different associations. In fact, each national association now has its own staffing. Blind and deaf national associations have support from Swedish International Development Assistance and therefore have 10 or more staff members each. The Physically Handicapped Association has only 3 staff, as its focus is on coordination and policy advocacy. DPT's public relations emphasis is on networking with local government, local charities, and chambers of commerce. DPT is now recognized by the government pubic welfare department as a major, national, cross-disability SHOP and has been appointed to assist in the drafting of the Rehabilitation Law. Vietnam In Vietnam, the Ministry of Labor, War Invalids and Social Affairs (MOLISA) carries primary responsibility for supporting disabled people. Article 125 of the Labor Code (MOLISA, 1995: 197-198) provides for the employment of disabled persons, including state subsidies for vocational training, low-interest loans for self-employment, tax reduction, and a quota and levy system. Comprehensive statistics on people with disabilities are difficult to obtain. About 14% of state spending is in the social protection sector, but much of the spending goes to programs for veterans (37%), and civil service retirees (40%). Only less than 1% goes to UN-recognized basic social services for vulnerable and disadvantaged groups (UN & MOLISA, 1999:73). Vietnam has some single-disability SHOPs with a long tradition and history, and their members are mainly disabled veterans. These SHOPs, however, do not maintain close contact with regional bodies, partly due to language barriers and partly because of their pseudogovernmental nature. The present study selected a SHOP based in Hanoi, which has a close working relationship with other SHOPs in the region: the Bright Future for People with Disabilities (BF). BF was formed in 1988 by college graduates, all with a form of physical disability, from a variety of tertiary institutions. This group now runs classes in foreign languages and computer skills, holds regular support group meetings, establishes links with the wider community and overseas organizations, and is now seeking land to build an office and a hostel for rural people with disabilities wanting to study or work in the Hanoi. For the purpose of establishing its legal existence, the group is under the sponsorship of the Society for the Support of Hanoi's Handicapped and Orphans, a government-recognized NGO. There are an estimated 2,800 disabled people in

Organization and Leadership of SHOPs in Asia

35

Hanoi. BF members specifically seek out the many disabled who stay at home totally dependent on their families or parents (K. V. Nguyen, 1999). After a couple years of operation, their achievements were already well recognized by the mainstream society, and their work was shown on a Hanoi television station during the National Teacher's Day in 1998, as an outstanding model. In Vietnam the national single-disability organizations that have a long history are very much directed by the government. They seldom have advocacy functions and have infrequent contacts with international organizations. On the contrary, BF receives overseas aid to run some pilot English-language and computer vocational training programs for disabled children, which are well recognized by the country. Its leaders take part in international events and leadership training. Its main and primary focus is advocacy; accessibility regulations and laws are its main concern. It has clear nongovernmental characteristics; that is; it has no special, privileged status in the government, it receives no special funding for its maintenance and operation; its officials are by election from among its members; its does not have any paid staff yet, but if it did, they would be non-civil servant and appointed by its elected administration. Its legal status is, however, uncertain, as the country's law has strict control on NGO status. This group is functioning under another governmentally formally recognized NGO. For example, it needs the consent and cooperation of this NGO to allow it to use its bank account to receive overseas aid. In spite of such limitations, its members have been appointed to high-level governmental committees concerning disabilities, and are given opportunities to make presentations to special committees of the National Assembly, as well as to join national delegations to receive official visitors, such as visitors from the President's Committee on Employment of People with Disabilities of the United States.

They are also supported by INGOs (e.g., Caritas International) to take part in regional and international events concerning disabilities. Because of their close rela-

tionship with senior government officials, by virtue of their work as well as their disability knowledge, they are seen as government advisers on disability issues. This SHOP succeeded in getting government approval to host the 2001 Campaign for the Asian and Pacific Decade of Disabled Persons, 1993-2002, which is sponsored by INGOs and ESCAP. This event was held in December 2001 in Hanoi, and attracted over six hundred overseas delegates and 1,200 local delegates from all over the country. The event was given major attention by all major government ministers and departments as well as national NGOs. Its opening was officiated by key state leaders, including the president. The impact of the campaign on Vietnam's disability movement is indeed very significant, particularly in promoting a barrier-free environment for all disabled people. In spite of this development, the

Vietnamese government is still cautious in working with international SHOPs. In

May 2000 there was a leadership seminar for disabled leaders in Vietnam organized by a national NGO concerning disabilities, assisted by BF, and sponsored in terms of funding and expert speakers by DPI Regional Office and ESCAP. No disabled leaders were invited to the seminar, however, not even members of BF. This is an indication of the prevailing conservative political situation.

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Self-Help Organizations of People with Disabilities in Asia

LEADERSHIP SHOPs' leadership characteristics are explored along the following factors: organizing challenges, constituency behavior and dependency dynamics, contextual factors in leadership training, selection and societal environment, charismatic and transformational leadership qualities. The concepts of transformational and transactional leadership (Burns, 1978) have special relevance to our discussions, given the young history of most SHOPs under study and some of the phenomenal developments in spite of the relatively weak status and self-image of its constituency. Transformational leaders uplift the morale and motivation of their followers with a sense of mission for a greater good of the organization and the society. Transactional leaders cater to their followers' immediate self-interests. One of the important qualities of a transformational leader, which applies to the present discussion, is cultural competence. Transformational leaders value, and adapt to, diversity among their followers. They should be capable of inspiring confidence in their achievement, use intellectual stimulation to encourage new ways of dealing with the increasing diversity of their followers, and be empathic with their followers' different needs as individually considerate leaders. Transformational leadership may be combined with charismatic leadership to give maximum impact to the organization. In this kind of leadership, followers have a strong sense of identification, as if the leaders have some "magic gift." These leaders could instill new values, and new direction, founding solidarity among large and diverse membership and commanding influence on political and social leadership. Specific leadership skills in areas of organizing, conciliation and mediation, management, fundraising, and professional knowledge (interpersonal and language- and disability-related) are discussed where appropriate. Mainland China Given CDPF's pseudogovernmental structure, which resembles that of a ministry in the state organizations, its leadership must be capable of demonstrating a all-around leadership qualities, in particular, networking, and professional and transformational leadership. The growth of CDPF as a central organization and a national network is significant by both international and China's own standards. CDPF leadership has to instill a strong sense of a disability mission supported by well-argued philosophies and mission and evidence-based, achievable targets. One of the most important missions of CDPF is to organize nation-wide projects to inspire disabled people to have self-respect, be self-confident, seek self-improvement, be self-reliant, to actively participate in social life and contribute to society. CDPF realizes these targets by recommending that the central government commend hundreds of self-improvement role models from all walks of life who have made extraordinary contributions to the society. As a strong advocate, CDPF plays an active lobbyist role and professional role in policy and law drafting. As a resource-raiser, it taps central, local, and overseas

Organization and Leadership of SHOPs in Asia

37

aid resources. Its networking with local bodies and local governments, as well as with international NGOs and GOs, is equally significant. CDPF has been able to get political support at the highest level for its national plans and its activities. This is mainly a result of the uniqueness of the charismatic and transformational leadership of its chairman, plus a number of leaders with disabilities who have connections with central leadership. The personal and professional qualities of its central leadership also receive very positive recognition from all over the world. Its chairman and CDPF as an organization have received outstanding awards for contributions to the disability field from the UN as well as from a number of GOs and INGOS. These awards include UN Peace Messenger, Special Testimonial of the UN Decade of Disabled Persons, Special Award of Asian and Pacific Decade of Disabled Persons, Henry Kessler Award (by Rehabilitation International), Paul Harris Humanitarian Award (by Rotary International), and Alexander Gralnick Memorial Award (by American Association for Psychological Rehabilitation). In view of the nationwide demands placed on its central leadership, CDPF has adopted a focused involvement in international events. It continues to play an active role in China's formal delegation to all UN and intergovernmental forums concerning disabilities. It has succeeded in getting a place in national delegations to mainstream forums (e.g., World Summit on Social Development,) that should give attention to disability issues. In working with INGOs, CDPF leadership plays an enabling and facilitative role, and not a formal leadership role. It has a clear vision that only through an international disability network with strong solidarity could the disability course receive positive responses from mainstream international forums. In May 2000, CDPF succeeded in hosting an international NGO world summit, bringing together all major INGOs of SHOPs, with a wide disability group representation (CDPF, 2000). The summit was able to produce a common call to the world to aim for an international convention on the rights of people with disabilities. This major initiative has been given explicit support by China's foreign minister in sponsoring such a motion in the UN. CDPF leadership has demonstrated qualities that are clearly transformational and professional in dealing not only with national challenges but also with challenges at the international scene. All these are orchestrated without the ambition to compete for prestigious leadership posts in the international arena. This quality of self-sacrifice for the greater good is perhaps another factor supporting CDPF's significant contribution to the world disability movement. Hong Kong Hong Kong SHOPs' leadership strength is mainly in the area of grassroots organizing. Their organizational structure is simple, without a large number of branches, and the administration structure is also simple, without many layers. Their paid staff is relatively limited in number, and therefore the organizations do not usually require sophisticated management skills. Their membership size has been relatively stable over the years, and there have not been major membership campaigns.

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Self-Help Organizations of People with Disabilities in Asia

The test of their leadership is in areas of mediation and conciliation. An important area is striving for solidarity in the leadership structure. There have been incidents when internal leadership conflicts have affected organizational development and also their public image. Another area is achieving a constructive relationship with traditional NGOs. Traditional NGOs usually house a relative larger number of professional staff and are the first line of contact with newly disabled people. They usually serve as referral agents for SHOPs. SHOPs with a good level of mediation and conciliation leadership skills are usually larger in size and relatively more stable in their leadership. Their leadership also receives reciprocal support from traditional NGOs and GOs. Leadership training and development programs are usually lacking in SHOPs. New leaders are not groomed consciously and are nurtured like apprentices. SHOPs are also proficient in resource-raising skills. Most SHOPs have to conduct public fund-raising campaigns. Therefore, they have to learn how to conduct successful campaigns, how to network with society celebrities and enlist their support, and how to network with funding bodies. SHOPs' leaders are proficient in networking and working with society leaders and government leaders to bring about new policy initiatives. Being clearly NGO in legal status, they are no different from any other civic groups. They have to learn to work constructively with statutory bodies, such as the Equal Opportunities Commission and the Hospital Authority. In situations where disability issues are not high on public policy agendas, SHOPs and these organizations will have to seal an alliance in order to bring effective influence on GOs and other community bodies. SHOPs, however, have to negotiate and mediate among themselves in order that their differences, hidden under a common statement, will not later turn into an open conflict of interests and further into a public debate. Some SHOPs take an active role in INGOs, such as the visually impaired and the physically disabled. Such involvement is more an effect of individual leadership qualities, such as good communication skills and professional knowledge, as well as an aptitude to have a proactive involvement. There is no government support or own organizational support for their involvement in INGOs. Some SHOPs are active in entrepreneurial income-generating activities, and their business managerial leadership skills are required to be at a high level. Their business initiatives usually carry a high social mission such as employing disabled people. They, therefore, have to be even more skillful in balancing business and social missions. In this regard their mediation and conciliation skills are even more in need as they have to learn to deal with dissatisfied employees with disabilities, as well as complaints from other stakeholders, such as consumers and business partners, against their employees with disabilities. SHOPs' leaders, though some hold a high public image, currently are not usually seen as transformational leaders. There is no "leader" in the disability field. SHOP leaders are working more as a collection of active self-advocates together with advocates from professional bodies and traditional NGOs. Hong Kong is moving toward a more diversified society with a more open government, more party politics, and an increasing number of interest groups. Hence, SHOPs' lead-

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39

ers will be required to demonstrate strong transformational leadership in order to sustain a strong sense of mission and strong membership solidarity. Japan Japan has a number of SHOPs, which have a relatively long history. The SHOP covered by the present study is JCILC, which was formed only after IYDP. Its advocacy skills are rather effective in that the objectives of independent living have been accepted by the traditional rehabilitation field as well as by the society at large. (The concept of independent living is not entirely at harmony with traditional Japanese culture.) Its resource-raising skills are also impressive in that in less than a decade it has formed a network of independent living centers all over the country with a range of support services for members. Resources come from central and local government as well as private funding. Its professional leadership is also recognized by traditional professional bodies, in that its self-trained counselors recruited from leaders with disabilities are recognized by government funding bodies and sanctioned by professional licensing bodies. The SHOP leaders take a special interest in political elections. They give active support and network with political leaders sympathetic toward their movement. Some SHOPs even nominate their own candidates to campaign for a seat in local government. While there are successes in taking part in a local election, they have also found that the amount of resources and attention required are well beyond the capacity of a SHOP or the leaders concerned. So far, successful candidates seldom seek a second term and rather wish to return to their primary work in the SHOP. Still leaders' networking skills have reported success in making alliances with key candidates campaigning for political seats on general as well as the more specific disability platforms. SHOPs are actively engaged in critical and sensitive issues, for example, euthanasia and genetic engineering. Their leaders show clear characteristics of transformational leadership in dealing with the mainstream culture, values, and bureaucratic structures. Some founding leaders of their movement gained their inspirational and instructional training while they were studying in the States in the early years. Their independent living movement therefore networks closely with that of the States and less with traditional disability networks. Some key leaders also immerse themselves in regional consultancy work, for example, with ESCAP, thus gaining experiences as well as further enhancing their leadership position. On the national scene, their organizational structure is relatively simple, their setup less elaborate and extensive than for some traditional SHOPs. They are still in the process of negotiating an effective networking relationship with other organizations. In Japan there is a central coordinating body of all organizations concerning disability in pursuit of UN objectives. This SHOP has only one voice in the Central Council, but its leaders' presence on the international scene is more significant for other organizations.

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Self-Help Organizations of People with Disabilities in Asia The Philippines

While a number of SHOPs exist in the Philippines with a long history, the SHOP covered by the present study was founded only after UN IYDP, the KAMPI. KAMPI's formation was a response to an international call from DPI for strengthening the voice of the disabled. This SHOP, though young in history, has a good collection of leaders who demonstrate high levels of English-language skills and professional knowledge. They are also more exposed to the latest initiatives in international forums. This SHOP did not receive government support in its formative years, and even lately the support from GOs is limited and mainly in providing funding for leadership training courses for local chapters. While KAMPI leaders do not show the kind of transformational leadership qualities that would make a major impact in mainstream society, the first politicians appointed to the Senate under the sector representation did create a very positive political context for the rapid development of KAMPI. Borjal (1998) was made a congressman by the president for the disabled sector by virtue of a unique and unprecedented provision in the 1987 Philippines Constitution, under which the marginalized sectors of Philippine society were given the right to be represented in the Congress with the term "sectoral" representatives. Senate Bill No. 296 provides for the representation of the disabled sector in the House of Representatives for the manner of their nomination and appointment and for other purposes. During Borjal's term, he engineered the adoption in 1992 by the Congress of important legislation concerning disability, the Magna Carta for Disabled Persons, Act 7,277. Borjal felt that three factors led to the successful adoption: (1) intensive and passionate advocacy to reach all key political leaders; (2) enlisting television and radio support and coverage, and (3) leaders with a strong and dominant personality to advocate for disability-related causes, and who could interact, eyeball to eyeball, with the highest political leaders of the country and with opinion leaders in all sectors of society. Given the favorable political climate, it is still noteworthy that in less than a decade KAMPI has expanded its membership coverage significantly to even remote islands. It also receives membership enrollment from traditional disability groups. The expansion of membership coverage is impressive given the lack of public resources. KAMPI's resources-raising skills, therefore, deserve a close analysis. It is successful in tapping private funding. It is also relatively successful in raising funds from overseas development aid organizations. The networking with overseas organizations might have something to do with the status of the Philippines as a whole, that a large number of international IGO and NGO development agencies include Philippines as a target recipient country, particularly the NGOs there. Networking with INGOs and GOs has, therefore, become an important agenda, and SHOP leaders need to demonstrate their leadership skills in this important area. Leadership development and training are another major concern of the national headquarters. Capable leaders at various local levels must be identified through

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various training programs and groomed for more responsible roles. In this regard the SHOP central leadership has been sending new leaders to international and regional training programs for exposure and immersion. Given the large number of members and the wide scattering of local branches, accountable, open, and credible democratic election procedures and administration procedures are essential. Successful SHOP leaders demonstrate skills in such areas. The central key leaders of the SHOP have been elected to high positions of INGOs and conducts frequent overseas missions to national and international forums to profess the mission and ideals of the SHOP. To carry out such international tasks effectively, a high level of communication and mediation skills is certainly required. On the national level, networking and conciliation skills are demonstrated in working with politicians and celebrities, while at the same time maintaining a high profile as an advocate to foster the solidarity of its membership. Given the diversity of the Filipino society, a transformational leader is yet to be identified who can move the hearts and minds of constituents and the wider society. The SHOP'S influence in the society is still relatively limited compared with that of other civic groups and civic issues. Taiwan The LWOD has received tremendous support from a partner organization, the Eden Social Welfare Foundation (ESWF). Xia Liu, who was a famous author and a wheelchair user, and five other persons founded ESWF in 1982. ESWF has both a religious mission as well as a mission to create an Eden-like organization that belongs to PWD. It grew from a staff of 2.5 to over 340 today with a variety of services for disabled people and senior citizens all over Taiwan and a branch in Malaysia, plus development aids to some developing countries. Under Liu's leadership, individual petitions and demonstrations of a small number of organizations on separate issues (such as university entrance requirements discriminating against PWDs, mass-transit inaccessibility, the lottery fund, and PWD's livelihood issue) finally merged into an action committee in January 1989, with about 40 organizations taking part. In May 1989, the league was formed and adopted an action project to revise the rehabilitation law and to protect the civil and political rights of PWD. In September 1989, Liu was nominated by the league to be a candidate of the Legislative Yuan election. Until now Eden Social Welfare Foundation is a major partner of the league in terms of providing it with financial and other assistance. In general, SHOP leaders are more active in grassroots organizing and professional skills. They maintain a close network with traditional NGOs advocating for their goals and directions. Their primary focus is advocacy, particularly in areas of drafting for a basic law concerning disabled people. They also play an active interest group role in lobbying for more government support. Their organizational structure is relatively complex, consisting of grassroots organizations, and national bodies, as well as active individuals with or without disabilities.

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The relationship between the grassroots organizations and the central organization is also more a coalition than a superior-subordinate relationship. Mediation and conciliation skills are, therefore, rather important in order to seal an effective solidarity among a diversified and loose membership. The league's involvement in regional and international activities is rather limited, due to the UN's and some INGOs' political concern about the political rift between the governments of China and Taiwan. The representatives of China always bar the league's application for full membership to most INGOs. This has handicapped its exposure to international initiatives and also its role in bilateral and multilateral cooperation. On the local scene, its political networking has begun to bear fruit, with First Lady Wu shu-chen, who is disabled, standing on their side. Its leadership skills in networking, organization building, and resource-raising are also likely to bear fruit. Thailand While a number of SHOPs exist in Thailand with a long history, the one SHOP covered by this study was founded only after UN IYDP, the DPT. DPT was founded as a response to an international call from DPI to strengthen the voice of the disabled. This SHOP, though young in history, has a strong leadership, which has demonstrated excellent networking and political skills. Under the new constitution of Thailand, its key leader campaigned and won a Senate seat through a functional constituency concerning welfare and disability. Its leaders maintain leadership positions with traditional NGOs, particularly the central welfare coordinating body. Its leadership skills in networking, mediation, and conciliation are also demonstrated by its ability to merge several major national disability groups to form the backbones of the SHOP. It also enrolls individual membership and is now expanding membership to other parts of the nation. Through local leadership development and training programs, it identifies local leaders and trains them to take up national roles. The SHOP receives some government funding to support such training. In terms of rehabilitation services for members, it receives no special and privileged treatment from government. In this area, it is much less active than traditional NGOs. The administration structure is, therefore, simple, with a limited number of paid staff. Because of its involvement in national government, it is allied with other civic groups. A recent example of getting other civic groups to support a discrimination case in constitutional court is a demonstration of effective alliance. Another example is the mass demonstration led by wheelchair users staged in the heart of the city against the inaccessibility of the mass-transit system. The SHOP here is very much advocacy-focused, particularly in issues concerning accessibility, education, and employment. Although most leaders are weak in English-language skills, Bangkok is a regional focal point for a large number of INGOs. This might be due to the presence

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of ESCAP, the regional arm of the UN for the Asian and Pacific region. UN specialist organizations (United Nations Children's Fund [UNICEF], International Labor Organization [ILO], WHO, etc.,) have branches here. A number of INGO (Handicapped International, DPI, etc.,) also have a regional office here. In the case of the DPI regional office, which was only recently (in 1999) relocated to Bangkok, it has already taken an active role in working with ESCAP in leadership training programs in the region. SHOP leaders have unique Thai characteristics in working in international programs and issues. They are not, in the traditional sense, good public speakers, their written English language is only moderately good, and their interpretation of international norms and standards and moral appeals in the disability field is also very much Thai-focused. In spite of this uniqueness, they have maintained an active role in INGOs. Their central leader is also a former elected regional president of DPI and has been making frequent overseas missions to promote the disability cause. Vietnam Main leadership areas are in professional knowledge. Leaders and members of the SHOP covered by the survey are mainly high-level professionals in various fields, including informatics, teaching, and communication media. Their organizational structure is simple, as it has no branches and no paid staff. They are, however, rather influential in relating to GOs and NGOs and in policy making. Some of their members sit on national coordinating bodies concerning disabilities and are actively involved in drafting laws concerning disabilities, such as access law. They are in frequent contact with INGOs and even GOs through their Internet skills, as well frequent participation in regional and international events. They receive sponsorship from INGOs and GOs through their government endorsement. This is a strong indication of their professional leadership, and they are considered the key players in engineering change in their own country. Their mediation and conciliation leadership skills are also noteworthy. They are able to obtain endorsement of major traditional NGOs for most of their activities, to the extent that their computer and English-language skills and vocational training services have been publicly recognized and put on national television on the country's national Teachers Day celebration. As all members serve on a voluntary basis, they do not have the capacity to extend their influence to other parts of the country. Their primary concern is, therefore, in advocacy functions. Their mediation and conciliation leadership has yet to be tested in making alliances with other disability groups, either local groups or other traditional national disability groups. They might have difficulty attracting membership from other SHOPs. In fact, one newly formed local SHOP in another locality was initiated by one of their members, and the two SHOPs were not on good speaking terms with each other. These and other leadership skills, such as resource-raising skills, have yet to be fully tested. On the one hand, all members are

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volunteers and could not spare the time to develop fully their SHOP. On the other hand, they have yet to obtain formal government recognition in terms of their organizational status and funding status. This SHOP is in the process of getting government approval to build a center of its own for vocational and social rehabilitation functions. If it is successful, this SHOP might be entering into an expansion development phase.

4

SHOPs as Actors in Civil and Inclusive Society

SHOPS, SOCIAL CAPITAL, AND CIVIL SOCIETY Most discussions in the literature on SHOPs as reviewed in Chapter 2 focus on their advocacy characteristics and their struggle against professional domination and the control or exclusion from mainstream society. Few people look at SHOPs as actors in civil society. In fact, SHOPs' sustained development cannot be achieved in a vacuum and could be realized only through networking and interactions with other institutions in a society, in particular, civil society. It is, therefore, worthwhile to note the caution made by Edwards et al. (1999: 120), in association with the NGO unit of the World Bank, that there is a tendency among some NGOs to focus on global advocacy to the exclusion of the national-level processes of state-society relations that underpin the ability of any country to pursue progressive goals in an integrated economy, and the task of rebuilding government capacity to negotiate, monitor and regulate global regimes; the importance of pro-poor alignments in civil society and between civil society, business and government; and the role of domestic civic groups in combating corruption, pressing for institutional accountability and preserving a social consensus in favor of economic reform. Edwards et al. (1999: 130) go further to suggest four key challenges for NGOs as actors in civil society: (1) how to mobilize a genuinely inclusive civil society at every level of the world system; (2) how to hold other institutions accountable for their actions and ensure that they respond to social and environmental needs; (3) how to ensure that international regimes both are implemented effectively and work to the benefit of poor people and poor countries; and (4) how to ensure that gains made at the global level are translated into concrete benefits at the grass roots.

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Civil society refers to a free association of people who generate social capital in human leadership resources, societal values that nurture mutual respect, trust, and help (see, e.g., Putnam, 1995). Civil society is a way of communal life dedicated to building social trust, helping individuals to become good, responsible citizens, and empowering them with the character and capacity to deal with their life challenges. Families, neighborhoods, religious communities, civic organizations, local governments, educational/public institutions, and the media are some of the basic social institutions that instill the qualities of civil society in individuals. Civil society is seen as a positive force in a society that checks government's abuse of power and works in partnership with government to pursue high aims and objectives of a society. Civil society as used by the NGO unit of the World Bank covers an even broader grouping of nonstate, nonmarket organizations that include NGOs, community groups, churches, social movements, trade unions, business associations, political parties, and think tanks. NGOs form a subgroup of civil society, though a very heterogeneous one (Edwards et al., 1999). Some behavioral indicators of civil society are formal volunteering and informal assistance and mutual help in settings not conventionally covered by government-supported institutions. SHOPs are among such organizations that provide such contexts for the nurturing of civil society. Social capital is an important dimension to study civil society. Social capital as an outcome of the process of civil society usually refers to norms and values (e.g., trust and reciprocity) that enable sociability or social conceitedness. Some authors consider social capital as resources that are stored in personal relationships (de Souza, 1997: 112), and its creation is multidimensional, not based on voluntarism and goodwill alone (Murray, 2000). Lappe and Du Bois (1994) advocate that building social capital rests on a foundation of three requirements: (1) a sense of hope by citizens that solutions are possible; (2) sufficient opportunities for engagement by those with the necessary motivation and skills; and (3) opportunities to nurture community service life-skills. An important dimension of social capital is trust. Trust involves the choice of one action in preference to another, despite the possibility of being disappointed by other actors. Trust engages personal feelings of faith and hope (Fenton et al, 1999). The value of altruism is especially noted in civil society. Social capital is different from other human capital such as education and training, where the learner is seeking improvement for self-advancement. Social capital is an investment in the productivity of others for the effective pursuit of mutual goals (Putnam, 1995; Riordon, 1998). Here, the concept of social capital has been used to explain effective community development, social reform, and the erosion of growth in industrialized societies. Foley and Edwards (1999) reviewed 45 recent articles reporting empirical research employing the concept of "social capital." The authors find that the literature is roughly equally divided between those who treat social capital as an independent variable and those who consider it a dependent variable and between

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those who operationalize the concept principally in terms of norms, values, and attitudes and those who choose a more social structural operationalization, invoking social networks, organizations, and linkages. Foley and Edwards (1999) argue that social structural interpretations of social capital have demonstrated considerable capacity to draw attention to, and illuminate, the many ways in which social resources are made available to individuals and groups for individual or group benefit, which should be the prime focus and central attraction of the social capital concept. Hall's (1999) comparative study on social capital between the United States and Britain showed that Britain's social capital has not witnessed a decline as in the United States (Putnam, 1995). Hall (1999) has, however, raised an important issue concerning social capital and its impact on the society, that is, its distributive dimension among sectors of the society and government actions that might have an impact on such distributive functions, noting, of course, that social capital is not only a public good but also a social good for the individuals concerned. SHOPS AND INCLUSION, CIVIL SOCIETY, AND SOCIAL MOVEMENT SHOPs are associations of and for people with disabilities. They are by virtue of their constitutions governed by members with disabilities elected from their membership. By their very nature they are voices of disabled people and advocates of the interests of disabled people. Advocacy for rights of disabled people, however, and promotion of disability awareness through SHOPs' may be more effective when framed in the context of civil society. SHOPs pluralistic nature is more appropriate for civil society than the family or state. In addition, SHOPs are more receptive toward social and political transformations. Through the UN's appeal, SHOPs' development is assisted by the states and also involved in states' policy formulation processes. In this manner, SHOPs offer disabled people more opportunities for political participation than do other social institutions. SHOPs, seen as a form of civil society, are preferred in the Asian culture, as they do not call for radical sociopolitical changes. Asian culture emphasizes respect for family and communal values, for historical traditions, and for senior members. Some argue that if SHOPs took on the concept of civil society as against that of a radical interest group, they would receive more support from the public and the state. SHOPs, other than being self-advocates, have to function like other NGOs in providing services to their members. Increasingly, their support from public funding is subject to operations within a market economy, is competitive, and employs techniques of business but at the same time upholds their uniqueness in cherishing nonmarket values. How SHOPs affect the cultivation of social capital among their general membership as well as their relationship with other actors of civic society has an important impact on the achievement of the ultimate objective of equality and full

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participation for people with disabilities. The social networks generated by SHOPs constitute an important form of "social capital" in the sense that they increase the trust that individuals feel toward others and enhance their capacity to join together in collective action to resolve common problems or to ensure that governments address such problems. Trust is, however, difficult to establish, easy to block, and constantly under threat. The art of trusting has in the modern era become a complex process, mixed with uncertainty in many areas. Indeed, this trust has been challenged by the growth of uncertainty, most notably in ecology, finance, and the economy. This study explores the social networks of SHOP leaders, society network as well as the social capital generated from such networking. It looks at the range of networking characteristics (e.g., in government or nongovernment groups, like government advisory committees). The focus is on networks of sociability, both formal and informal, and on the norms of social trust widely associated with such networks. Other indicators include the support that SHOPs receive from other civic groups and social events in collaboration with other groups in support of measures that concern disability. Some useful examples can be cited to show how SHOPs in the Asian region gain the support of civil society in dealing with antidiscrimination measures as well as promoting inclusion of disabled people in mainstream society. These examples are discussed next. Antidiscrimination through Legislation and Civic Education Combating discrimination and promoting inclusion are two different and yet related approaches in achieving the ultimate objectives of full equality and participation of people with disabilities. To deal with discrimination against people with disabilities, public education, legislation, and independent enforcement agencies are three important measures, which unfortunately are not commonly found in countries of the Asian and Pacific region. In order to promote inclusion of people with disabilities in mainstream society, a long-term and comprehensive civic education program is vital. The program should aim at raising the image and status of disabled people and encouraging interaction between them and nondisabled people based on mutual respect, mutual help, and the spirit of brotherhood. SHOPs in the region realize that positive changes in these two target areas would not be possible without collaboration among all parties and sectors in the society. Antidiscrimination Legislation. Discriminatory acts of individuals and discriminatory policies, procedures, and practices of public organizations have been declared unlawful in a number of countries in the Asian and Pacific region. Such legislative provisions are implicitly provided for in national constitutions, special comprehensive laws concerning people with disabilities, special antidiscrimination laws, or human rights laws in a country. In the region, quite a number of countries can claim to have antidiscrimination legislative measures in one form or another, as described earlier. In most countries, however, citizens with disabilities have great difficulties claiming the protection of these legislative measures, either

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because they are ignorant of such measures, because the law enforcement agencies are not helpful, or because the court procedures are too complicated and costly. For example, in Thailand a discrimination case was tested in the Constitutional Court, which is considered more effective in dealing with discrimination than other courts but which unavoidably incurs complicated court procedures. In most cases, complaints against discrimination have to be dealt with in civil courts, which are costly, and have an uncertain outcome, particularly when the case is against powerful and resourceful individuals and organizations. It has now been well recognized that victims of discrimination are usually people who are from disadvantaged sectors of the population, and who are powerless and poor and that discriminatory acts may be committed by any individuals and organizations in the society, whether they are GOs, NGOs not for profit-making, or business corporations. SHOPs, therefore, have advocated for special legislation to deal with disability discrimination. Usually, the lobbying process is lengthy, and the politics of getting a coalition among a great number of political groups and civic groups is complex. That explains why only a small number of countries in the region have set up, through legislation, special enforcement agencies independent of government. The Human Rights Commission in Australia and New Zealand and the Hong Kong Equal Opportunities Commission (EOC) are such examples. The EOC is independent of the government structure and created by law to enforce the Discrimination Disability Ordinance, which makes it unlawful to discriminate against anyone, including by harassment and vilification, on the grounds of disability. EOC can receive complaints from anyone who has been subjected to discrimination and can conduct an investigation. The parties concerned are obliged to respond to notices and inquiries from EOC, and if they do not cooperate, their case, if presented in court, is duly noted in a court hearing. EOC also has the statutory power to initiate and facilitate conciliation between the parties. Here, EOC plays a neutral role, but its mere presence in the conciliation process helps bring about a balance of power between the parties, an efficient and less costly alternative to obtaining compensation for victims of discrimination. Conciliation cases, although confidential, would generate useful lessons for EOC in dealing with the discriminatory practices of powerful organizations. In cases where settlement cannot be reached and depending on the nature of the complaint, EOC may offer alternative forms of assistance, including legal assistance. EOC, however, is not taking the place of civil court. Individuals are free to file their complaints at their own expense in court and to seek civil compensation. In a few countries, there are tribunals to hear discrimination cases. Tribunals are presided over by judges. They have simplified procedures and are low-cost as compared to a law court. For example, lawyers are not allowed to represent any parties in tribunal hearings. The findings of the tribunals are mandatory and admissible in court. The impact of tribunals in dealing with discrimination deserves careful and comprehensive study by countries in the region as an alternative means

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Self-Help Organizations of People with Disabilities in Asia

to help people with disabilities, taking note o f the w i d e differences in legal prac-

tices. As a proactive approach to deal with discrimination, EOC drafts codes of practice that prescribe procedures and structures for organizations to ensure nondiscrimination for endorsement by the legislature. Upon endorsement by the legislature, organizations are obliged to observe the codes. Deviant organizations will have weak defenses in court. EOC has published a code of practice for employers on employment and one for schools, which are widely distributed in the community. EOC also gives training to organizations on how to implement the codes. SHOPs in Hong Kong have taken special interest in, and make an effort to monitor and support, the EOC in drafting such codes of practice. Similarly, EOC also adopts a standard procedure to consult widely and intensively with all disabled groups. Through the consultation and drafting process, SHOPs have to deal with other interested parties, including the government, the business sector, and the trade unions, as well as other civic groups in order to achieve as much support as possible. Civic Education and Public Campaigns. The UN has declared 3 December each year as the International Day of Disabled Persons, and member states are asked to observe the day with continued commitment to support the rights and interests of disabled people. In most countries in Asia, the day is observed with a wide range of activities, with a common aim to achieve public participation in support of disabled people and their families. Such activities have become major and annual national events in a number of countries in the region. In the Philippines, a national week on rehabilitation observes International Day, there are National Days in Thailand, China, and Hong Kong, plus a series of events with focused objectives of civic education. In China, International Day is observed all over the country with wide participation of the society. In Beijing, for example, a major street is reserved on the day for public display of rehabilitation programs and performances by disabled people, with support from a wide range of civic groups. The public's participation has been rather active over the past years. Such events are held in various localities across the country and coordinated by CDPF. CDPF also takes up the task of fund-raising for such events. In Thailand, International Day is coordinated by the Thai National Council on Social Welfare, and major Thai SHOPs are its members. Although Thai SHOPs are not the leading organizations, they have been key players, and such national events have made a positive impact on their rights and welfare. Such impact has a lasting effect on the society, even during the difficult times of the Asian financial crisis. According to Thai SHOPs, the sense of hardship brought about by the crisis has at least one positive impact on Thai society, that is, it has enabled Thai people to better understand and share the meaning of poverty, in particular the poor situation of disabled people. The once-prevailing superstitious belief that disability comes from sin and that employing disabled people brings sin has given way to an attitude of understanding and support.

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The Far East and South Pacific Games for the Disabled (FESPIC Games), hosted by Thailand in Bangkok in 1998, building on the success of its Natonal Day events, has had an immense impact on society's attitude. As Thai people had more time to watch television after the financial crisis, the games' wide coverage in the media, including the television, made Thai people more aware of the abilities and sportsmanship of people with disabilities. Thai society united behind the Thai disabled athletes who scored a record number of medals and won the second runner-up among all participating countries. Thai people understand that the outstanding achievement of their disabled athletes does not come easily, as they do not have sophisticated and modern training facilities, and the hosting of the games was under heavy clouds of the regional financial crisis. Thai people became encouraged and somewhat forgot the hardship of the financial crisis. Consequently, more people are throwing their support to long-term, proactive policies concerning disabilities. Thai SHOPs had been active and key organizers of the FESPIC Games and through their networks in the region assisted in obtaining a good turnout from countries in the region. Following the success of the FESPIC Games, through the concerted campaigns of NGOs and disabled groups, as well as growing support from the society, the Thai government proclaimed the year 1999 as the Year of Education for Disabled People. In Thailand, about 8% of disabled children receive education between ages four and nine, even though Thailand has a policy to provide free education to all students. The policy target of the Year of Education for Disabled People is to increase disabled student enrollment from 40,000 to 80,000. The strategy, as advocated by the disabled community, is simply to ask each mainstream school to admit disabled students. There are now 51,000 schools for grades 1 to 12. If each school admits one disabled student, the policy target will be accomplished, and, above all, disabled students will enjoy equal education opportunities in an inclusive learning environment. To support these mainstream schools, the government is urged to set up a few special education centers, which will serve as resource centers for mainstream schools. Again, the advocates, of whom Thai SHOPs are among the most vocal, tell the government that there is no need to find new money to build these special centers, because of the oversupply of primary grade schools as a result of a decrease in population growth from 3% to the present 1%. These redundant schools can be converted to special centers, and the redundant teachers could find new employment in these centers with additional training. As a further measure to support disabled graduates of colleges and universities, the government is urged to employ these graduates for special education teaching jobs. These graduates, about 40 of them in 1999, would be very helpful peer models for teachers and students alike. Advocates are telling the Ministry of Education that the policy targets of the Year of Education for Disabled People will be accomplished without finding new money and building new structures. Rather, the government needs good management of resources, including physical, financial, and human resources, and new thinking.

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Since the financial crisis, opportunities for human resources development in areas of vocational training have not been adversely affected, thanks largely to the lending policies of the World Bank and Asian Development Bank. In order to obtain loans from these banks, the Thai government has to pledge more concrete support toward development programs for the poor and the disabled. The government has, therefore, increased its support for vocational training for disabled people by 10,000 training positions. The Thai Association of the Blind, for example, has successfully obtained government budgeting for 1,800 vocational training places for blind people. Other NGOs are working on program proposals to take advantage of these new initiatives from the government. Furthermore, the Association of the Blind has obtained additional government budgeting for leadership training programs for disabled people. The EOC in Hong Kong has the primary responsibility to educate the public about the Disability Discrimination Ordinance and promote equal opportunities. Public education to promote inclusion, however, has been practiced by a large number of organizations from very different backgrounds. EOC has adopted the following public education strategies: (1) building partnership with corporate communities; (2) educational talks and publications aimed at targeted audiences; (3) training the trainers such as human resources personnel, social workers, and teachers, supported with the publication of training modules, a comprehensive packs with teaching aids such as videotapes, information kits, and training manuals; (4) facilitating grassroots involvement through a Community Participation Funding Scheme; and (5) using mass media, in the form of 30-second television publicity, television documentary drama and radio programs, and feature articles in print media. EOC also conducts baseline surveys to monitor trends and changes in attitude and to measure the long-term effectiveness of antidiscrimination public education campaigns. Other than EOC, quite a number of GOs and NGOs take an active role in providing public education using their regular staffing and funding. By far the most comprehensive and far-reaching public education program concerning disability in Hong Kong is the one coordinated and funded by the commissioner for rehabilitation (C for R) of the government. The government's public education is to promote inclusion and aims to nurture new systems of values and culture in which the general public would include people with disabilities in mainstream society as desirable public and personal goals. Both the C for R and the EOC carry out public education programs as well as finance those of community groups. The former aims at promoting inclusion, and nurturing new values and cultures, while the latter aims at eliminating discrimination. Both organizations have made available public funds for use by all GOs and NGOs through a public invitation and screening process. The two schemes over the past years have successfully encouraged GOs and NGOs to invest large number of regular staff in public education, plus the development of a large number of volunteers. A territory-wide, community-based public education network has been firmly installed. The core and primary networks are set up in each and every

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administrative unit (district), with GO and NGO representatives, plus elected councillors. Mainstream service organizations have been invited to join the core units. The schemes have provided regular and long-term support to Hong Kong's International Day of Disabled Persons (IDDP) program. At the beginning stage, the IDDP took the form of a central event. Now it has turned into a network of community-based IDDP programs with a central program as the climax in celebrating the IDDP. A central committee is formed with secretariat from the Joint Council for the Physically and Mentally Disabled and representatives from each and every district-based IDDP core unit. The central IDDP has also succeeded in getting free travel coupons for people with disabilities and their companions on IDDP on major public land and sea transport. SHOPs have always been active in seeking such funding as well as partnership with other civic groups to launch both local and territory-wide public education programs. Over the past decade, public education programs in Hong Kong have progressed from ad hoc, piecemeal approaches to a system of comprehensive and collaborative measures. A proactive, two-prong approach both combats discrimination and promotes inclusion. New values and cultures have emerged in the society to support the enforcement of legislative measures. In a recent case in Hong Kong, a neighborhood resident group mounted staunch resistance against government's plan to install a health clinic for people with disabilities, including those with HIV or AIDS. The resistance caused discriminatory acts against staff and users of the health facilities. The resident group's protest action, while widely covered by news media, is also severely criticized by news editorials for its uncivilized acts. Its resistance was not echoed by other neighborhood groups. At the same time, a concerned residents group has also formed an alliance with EOC to deal with the neighborhood discrimination. This incident clearly shows that there are grounds to be optimistic that the public education work in the past decade has certainly built for Hong Kong a firm foundation to move ahead toward the ideals of a civil society. Indeed, punishments alone cannot bring about a world that cares. There is an old Chinese saying: "It takes ten years to nurture a tree, but one hundred years to educate mankind." Civic Education through Role Models. Wiriya Namsiripongpun, a person with visual impairment, the chair of DPT, and a professor of law, maintains considerable optimism in dealing with the financial crisis. His autobiography tells his people how he survives, finding opportunities and seeking out new thinking in times of crisis. His book has sold over 10,000 copies, and he is using the proceeds to set up a foundation to use radio airtime to promote disability awareness in the society. China and Hong Kong run an annual event to select and promote outstanding disabled persons. These outstanding persons are selected based on their achievements and contributions to society, a scheme very similar to the selection of outstanding businesspersons. Award ceremonies are held publicly with media coverage. China also publishes the stories of these awardees for wide circulation in the country as role models to encourage disabled people and as civic education.

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SHOPs participate actively in such programs in nominating candidates as well as in selection. Usually other civic groups are invited to be co-organizers and flinders. For example, in Hong Kong, the key co-organizer is a Rotary Club. SHOPs and the Social Inclusion Movement Following our discussions on the concept of civil society, the principal obstacles to achieving inclusion are the fragmentation of civil society in general and the prevalence of inequality in communities. In this way, SHOPs' leadership, other than strengthening associations among their own members, must also strive for a pluralist identity so that they participate in civil society about multiple civic issues. The disabled people's movement, however, is very much based on disability consciousness or identity politics (Humphrey, 1999). Furthermore, academics and activists in various civil rights movements are increasingly perturbed by the personal and political dangers generated by adherence to identity politics. The actual complexities of social life—in particular, the multiple dimensions of identities and the matrices of interlocking discriminations—have propelled society toward a politics of difference. When disabled self-help groups coexist with other identity groups such as race groups and women's groups in a mainstream organization or public issue (e.g., health and housing), the politics of identity is always entwined with the politics of difference. SHOPs, therefore, have to deal with the two challenges in the pursuit of an inclusive civil society: to accommodate an increasing intragroup diversity in disability characteristics and to develop sustainable coalitions of groups with different identities. Intragroup Diversity. In order to sustain members' confidence and trust in SHOPs, members should have a high level of engagement and association with SHOPs. Communication and interpersonal contacts are major issues. SHOPs must find new ways to involve members that are access- and communicationappropriate. Home-based and Internet-based association is certainly a growing form of association. Generally, SHOPs can be classified as single-disability and cross-disability. Single-disability SHOPs' members come from a primary, single-disability group, such as people with visual impairment, hearing impairment, or parents of people with learning difficulties. Cross-disability SHOPs' members have various disabilities, as do the children represented by parents' groups. Single-disability SHOPs have a longer history at both the national and international levels. Cross-disability SHOPs have increased in number significantly since the UN IYDP, as well as the founding of the DPI in 1980 in Singapore (Dredger, 1989). DPI has since established national networks all over the world. The relationship between singledisability SHOPs and cross-disability SHOPs has been rather complex. There are often debates on who has the authority and expertise to talk about different disability issues. The debates almost mirror those between SHOPs and professionals and organizations for people with disabilities. The heat of such debates has been cooling down over the years, not so much because a solution has been found but rather

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because the competition for world attention at the global level with other global actors has pushed SHOPs to the sideline. Intergroup Coalitions. In Asian societies, marked differences are found in sociopolitical systems. It is useful to find out what strategies would be effective in achieving sustainable coalitions with other groups. Factors like political culture (participatory or directive), power centers of the government and the civil society (concentrated or proliferated), party politics (multiparty or single party), and degree of protection of civil and political rights affect the effectiveness of a strategy or approach adopted by SHOPs.in achieving an inclusive society. The choices would be between collaboration or self-advocacy, supporting or challenging power centers, confrontational or otherwise through multiparty system, consciousness-raising or indirect campaigning in situations related to political or civil rights. From this framework, we can broadly classify SHOPs in China and Vietnam as taking an approach that is markedly different from those in Japan, Hong Kong, and Taiwan, while those in the Philippines and Thailand are found in the middle of the continuum. CDPF is a massive national organization, both in relative and absolute terms when compared with similar organizations in other Asian countries. Given the sociopolitical situation in China, CDPF provides services to disabled people complementing those of the state, adopts a collaborative approach with GOs and other civic groups, mounts indirect disability awareness campaigns, and adopts change strategies acceptable to the mainstream society, through political lobbying and other means but not confrontation and public protests. A similar situation is found in Vietnam, where SHOPs need the sponsorship of a national NGO to endorse its status and programs of action. In Japan, Hong Kong, and Taiwan, where there are multipower centers in the civil society, multiparty politics, and government selected by popular election (Hong Kong does not strictly belonging to this category), there are often reports on SHOPs' confrontational actions, as well as sustaining collaboration with other civic organizations. SHOPs are also directly involved in endorsing the platform of political parties during elections. Confrontational actions aim at both GOs and NGOs. Disability awareness programs are often human rights-based, not indirectly campaigning for the rights of disabled people. In the Philippines and Thailand, confrontation tactics are adopted but not as commonly and frequently as in the other three countries. These have some relationship with the homogeneous nature of the civil organizations as well as a less attention to the upholding of human rights by various social institutions. SHOPS AND POLITICAL PARTICIPATION A more direct and active role of SHOPs as a stakeholder of civil society is their involvement in popular elections. Some SHOPs are actively involved in such processes (e.g., CDPF in China, the LWOD in Taiwan, SHOPs in Hong Kong, the independent living centers in Japan, SHOPs in Thailand). In most cases disabled

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people campaigning and/or elected to government offices have to attend to general issues that are of concern to a wider constituency. To promote their members to political offices, SHOPs have to learn new political skills. Participation in civil society by taking up leadership roles within SHOPs can require considerable effort by individuals; however, it exposes individuals to rich social networks and opportunities to gain useful organizing and professional knowledge and skills. For some individuals a time may come when a choice has to be made whether to continue with the leadership role in a SHOP or be engaged in a political leadership role. In most cases, as illustrated in Japan, Thailand, and the Philippines, individuals can hardly find the time and resources to cope with the demands of both civil and political leadership roles. Exceptions could be found in cases when the political role is specially assigned by the government or constitution as representing the disability sector or a combination of related sectors. China is such an example; the Philippines and Thailand are another. In the latter case, when the functional constituency provision becomes dated by their constitution, such political roles for disabled leaders are no longer available by functional group election or by government appointment. In such situations, disabled leaders who join popular elections have found it too demanding unless they have backup from political parties. (An exception is a former senator, Eita Yashiro of Japan.) A major challenge confronting political leaders with disabilities is that they have to work with a wider constituency and on more widespread issues than disability issues alone. Furthermore, the disability population is usually spread thin in a constituency. These are the problems reported by disabled leaders who have taken part in political elections, either on a party platform or single-candidate platform. The majority of SHOP leaders taking part in popular elections have not been able to get elected, and even if elected for the first term, they bow out in the second, simply because of the pressure of the political process. Most of them choose to return to a SHOP'S own elected positions to pursue their primary and original mission of representing and serving the disability community. Striking a balance between civil society and political processes will remain a major challenge to SHOPs in the years to come. Inclusion Policy Targets and Politics of Difference and Coalition Inclusion as an ultimate policy target has to be achieved by removing barriers in the society's mainstream environment. Some inclusion measures are applicable to other population sectors in the society. An example is barriers in the built and transport environment, barriers not only to people with movement and communication challenges but also to old people and other people having transient physical conditions, such as pregnancy and certain illnesses. SHOPs so far have encountered few problems in mobilizing support from other civic groups or interest groups to support such inclusion targets. Therefore, in advocating for such inclusion measures, SHOPs have also enhanced common bonding and solidarity in the society. Implementation of such inclusion measures is, therefore, subject only to

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limitation of resources. For most Asian societies, such political decisions in resource allocation have had less negative impact on the civil society. A good example is SHOPs' demand for accessible transport. Hong Kong's SHOPs have finally succeeded after over a decade's lobbying to get mass-transit operators to agree on an accessible system. Similarly, a recent mass demonstration in 1999 by disabled people in Bangkok made some stations of the Sky Train accessible. Such social actions have all been well supported by the civil society, and the outcome further strengthens the civil society in various countries, as people feel proud of such accessible transit systems. There are inclusion targets, however, that might be seen as having interest conflicts with other civic groups, for example, the inclusion target for quotas in secondary and tertiary education. Disabled people are granted positive discrimination through an affirmative policy target. Such an education quota system might not cause too many hard feelings in society if the supply of such education places is not scarce. In some countries such as Hong Kong, higher education places are scarce and heavily subsidized by government, and their admission policies have always been heated debates by professionals, parents, and politicians. Therefore, a SHOP advocate for such a quota system would certainly receive less support from other civic groups. To push through such a system would likely cause a split rather than solidarity with other interest and civic groups. Such a measure would likely weaken the civil society. The situation would become more complex if admission policies include a number of quotas for various student sector (e.g., those with outstanding performances in areas other than academic subjects). On the other hand, without the benefit of higher education, disabled people as a population sector would always be facing disadvantages in getting a fair share of society's resources. A further test is found in the employment quota system, under which businesses are required by law to employ a minimum number of employees with disability (usually from 0.5% to 2%) or to pay a levy if they fail to fill the quota. Such a system has seen passive response from trade unions and employers' associations. The quota system is also seen by some other groups more as a form of special tax and a haven for those employees with substandard vocational skills. The Rehabilitation Fund of Thailand is an example relating to the employment quota system in Asia. The Rehabilitation of Disabled Persons Act provides for a Rehabilitation Fund to be managed by the Office of the Committee for Rehabilitation of Disabled Persons. Since its formation, the fund has been set at 85 million baht. Some income in the fund comes from the levy paid by employers who do not comply with the employment quota for disabled people, plus government's general revenue (Office of the Committee for Rehabilitation of Disabled Persons, 1991). The quota system requires that for every establishment of 200 workers, at least 1 shall be a disabled person. The levy so collected is to support income-generating activities of disabled people. So far the levy collected has not been affected by the regional financial crisis and remains at around 30 million baht. Disabled people may apply for interest-free loans from the fund to set up a business, including selling lottery tickets and computer word processing. The level

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of loan repayment is around 80%. Even in difficult financial years, the government still maintains an annual target of 85 million baht for the fund. Mainland China operates a similar employment quota and levy system. CDPF is charged by the state to collect the levy and to implement the quota system. Since it started in December 1992, the employment quota system has been adopted in 578 cities and 1,564 counties. The following figures show how significant the quota system has been for the employment of disabled people. Of the 4.5 million working-age, disabled people in cities and towns, 3.3 million have gainful employment, including 849,000 (25.7%) in workshops, 1.6 million (48.5%) in open employment under the quota system, and 850,000 (25.8%) in self-employment. The employment rate in urban areas has increased significantly, from 50% in 1987 to 73.3% in 1998 (CDPF, 1998c: 20). On the implementation of the quota system, Beijing Disabled People's Federation (1998) reports on the importance of mobilizing senior government leaders to support the system and also networking with both the business sector and community-based institutions. The largest fund collected from such a quota levy system is in Japan, where the purpose of the levy is to equalize the economic burden incurred when hiring disabled workers. Essentially, levies are collected annually from companies retaining more than 300 regular employees. The amount is 50,000 yen per person per month for the number of disabled workers short of the legally required number. Using the collected levy as a source of revenue, an employment adjustment allowance is paid to employers who retain more than 300 regular workers if they employ more disabled workers than legally required. The amount paid is 25,000 yen a month for each disabled worker in excess of the quota. Also, small and medium-scale enterprises receive a monetary reward if they hire many disabled persons (in excess of 4%), in order to lower their economic burden. In addition to such premiums, various grants are paid as a subsidy to assist employers who take positive measures to employ disabled workers. The major grants paid to mitigate the financial burden of these employers include those for improving work facilities for disabled employees; for providing skill development training; for assigning personnel who give consultation and assistance; for providing housing and commuting measures; and for setting up or improving facilities or equipment in enterprises retaining many severely disabled persons (Matsbara, 2000). As in other countries adopting the employment quota system for disabled people, the quota (between 1% to 3%) has seldom been met. The employment quota system, as a measure of positive discrimination or affirmative action, is not uncommon in the Western world. In the United States, similar affirmative action policies have been in practice for a long time. For example, affirmative action for black people has made a significant impact in improving their educational qualifications and thus an improvement to their general socioeconomic status. Affirmative action, however, has to have a well-defined target population so that its effect can be assessed, and their policy targets have to be reviewed for continued implementation or termination. In a population with disabilities, there is more diversity than commonness. The target population lacks a clear definition. Furthermore, categories of disabilities to

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be included in government policy coverage are always on the increase. Historically, physical disabilities, such as those of orthopedic origin, and hearing and visual impairment, are early categories included in government affirmative action. Gradually, people with psychiatric impairment and intellectual challenges are being accepted as major disability groups, as their numbers are even larger than the number of physical disability types. More recently, people with chronic illness (e.g., illnesses related to vascular system, kidney, etc.) and elderly people with senile symptoms have been included (e.g., in Hong Kong). As the general disabled population becomes larger and larger in number and more diverse in disability classification, the design and implementation of public affirmative action would become more complex and difficult. As a result, such affirmative action would be likely to receive less public consensus and support and, therefore, weaken the civil society. Furthermore, such a quota system does not have a similar positive impact on people with more severe challenges, who usually have lower priority for recruitment by employers as compared to those with better working abilities and fewer challenges. SHOPS IN THE MAKING OF CIVIL SOCIETY SHOPs need to take note of their roles in civil society when voicing their demands. Generally, demands that support civil society would receive support from other actors in civil society and are likely to succeed. Demands that support their specific interests that are not in harmony with the civil society would weaken the civil society and in turn receive less support from it, and thus be less likely to succeed. SHOPs in various Asian countries place emphasis on their networking with civic groups, NGOs and GOs, as well as the business and the private sectors. SHOPs use such networks for multipurposes, including fund-raising, lobbying, and mission promotion. Above all, SHOPs have to depend on such networks to pursue the ultimate objective of an inclusive society for people with disabilities. SHOPs of developing countries in Asia need development aids from external sources, including the global civil society. In order to realize such collaboration, SHOPs have to demonstrate intellectual capital and organizational infrastructure plus managerial skills that are required by donor organizations. Furthermore, they have to prove accountability and aim at maximum social impact through the media. SHOPs should not confine themselves to the role of an interest group pursuing only self-interests but more as a key stakeholder in civil society on general issues. Such a phenomenon is being witnessed in some countries where SHOPs work closely with the civil society on a range of societal issues, such as women, health, environmental pollution, and land mines. SHOPs in Japan, Hong Kong, and Taiwan are moving in such a direction. A similar phenomenon is witnessed at the world level, where there is a networking of international SHOPs (ISHOPs) with other INGOs.

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Globalization of Disability Issues

GLOBALIZATION AND INTERNATIONALIZATION Globalization as a social and economic phenomenon has attracted a great deal of world media attention. Its characteristics are usually discussed in the context of financial markets, the Internet, transnational corporations with a global production and workforce, and the impact of regional and global trade regulations, such as the Asia-Pacific Economic Cooperation (APEC), North America Free Trade Agreement (NAFTA), and World Trade Organization (WTO) (see, e.g., Stryker, 1998). In the 1990s, the process of globalization in Asia accelerated, notably in the areas of finance and trading. In trading, it is related mainly to China's application for membership in the WTO, which has been pending for many years, and only in 1999 did China enter an agreement with the United States. The issue was still unsettled by late 2000. Even China has entered into bilateral agreements with major players of the WTO, including the governments of the United States, the European Community, and Canada. WTO as a world body has policy, judiciary, and executive functions in monitoring members' observance of regulations laid down by this world body. WTO as an example of globalization indicates how a state's sovereign authority has given way to the ruling of WTO in policies and measures governing a country's trading with the rest of the world. The globalization process in trading has weakened national states, which have lost their ability to formulate autonomous national policies and guarantee the classic principles of state sovereignty. Citizens' rights, notably, the economic, social, and political rights traditionally linked to the national state, are seen to be threatened by the globalization process. The process of globalization in areas of finance is another phenomenon that is felt deeply by many Asian countries, as revealed by the Asian financial crisis starting in Thailand in May 1997. Following the Asian financial crisis, Malaysia's

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prime minister, Mahathir Mohamad, raised one of the strongest criticisms against financial globalization, that it serves the interests only of the Western world (Mahathir, 1999). While financial markets in the world are moving fast toward a unified and seamless model, social movements have also extended beyond national boundaries at a fast speed. Demonstrations and protests supporting disadvantaged and marginalized people and protecting the environment staged at international, intergovernmental forums are attended by increasing number of people from across the world (Keck & Sikkink, 1998). The globalization of social movements has raised people's awareness of social concerns all over the world. The massive social demonstration held in connection with WTO's assembly in Seattle in 1999 is a notable example that caught the world's attention for social concerns not adequately dealt with by WTO members, particularly issues of WTO regulations affecting labor welfare and poverty of the developing world, or the Third World. The process of globalization in the economic spheres is now receiving more critical reviews by governments all over the world, as indicated by President Clinton's speech at the Seattle WTO Assembly. Similar situations with social protest were identified in the Asian and Pacific region before the Seattle WTO event (Ericson & Doyle, 1999). Internationalization, as the linguistic structure of the term implies, refers to a process between or among nations, or "intemations." The process does not mean to weaken the sovereign rights of a nation. Between nations, it would refer to bilateral agreements, and signatory nations are free to rescind such agreements. Among nations, internalization follows usual UN processes. The UN declares a set of principles and policy guidelines and targets as desirable objectives to be implemented by member nations. Member nations adopt such policy guidelines, and then the UN promotes those policies as having positive effects to the rest of UN members as good practices and role models, thus bringing prestige and status to the governments concerned and influencing those not observing such policies. In some exceptional situations relating to human rights issues, the UN can declare sanctions against those member nations seriously violating human rights through its highest authority, the Security Council, or the Human Rights Commission. Such extreme situations have not been identified in the disability field. In the Asian and Pacific region, the Association of Southeast Asian Nations (ASEAN) is a good example of internationalization. GLOBALIZING DISABILITY ISSUES AND SHOPS In the disability field, INGOs, including international self-help organizations of people with disabilities (ISHOPs), are seeking international alliances to lobby governments to observe policies and action targets suggested by various UN and intergovernmental forums. ISHOPs are also active advocates lobbying governments to support development of SHOPs as well as their participation in major decision-making bodies and processes at the national level. In this regard INGOs and

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ISHOPs did make a significant impact on the UN in declaring 1981 as IYDP and 1983-1992 as the UN Decade of Disabled Persons. Accompanying the UN Decade was a guiding document, the World Program of Action Concerning Disabled Persons (UN, 1983), which outlined a concrete agenda of action for member nations to implement. Member nations are required to submit country reports on a regular basis to the UN for review. On the completion of the UN Decade and as a follow-up, the UN adopted Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN, 1994) and appointed a rapporteur to monitor the implementation of the Standard Rules. While the World Program of Action is an advisory document, the Standard Rules have a more authoritative status in requiring member nations to submit country reports for review. Still, observance of the Standard Rules is not mandatory as far as the United Nations is concerned, and nonobservance by member nations would not require specific actions or sanctions from the UN. After all, disability issues are mainly nation-based and subject to national constitutions, laws, and policies. Given the international profile of the disability movement, SHOPs should be understood in terms of not only their local manifestations but also as a global phenomenon, characterized by supranational moral statements, objectives, strategies, and organizations. Networking and Organizing in the Asian and Pacific Region SHOPs in the Asian and Pacific region have made extensive use of UN documents. They have urged their governments to refer to such documents in drafting laws. Individual SHOPs are relatively weak compared to other politically influential bodies in their countries (e.g., women's groups, business groups). Their demands are also usually not high in priority on the political platform of political parties. Therefore, on the regional scene, SHOPs are seeking to form an alliance to exert international influence on their individual governments. A notable example was the adoption of the Asian and Pacific Decade of Disabled Persons 1993-2002 (ESCAP, 1994). This resolution was unanimously adopted at the Assembly of ESCAP by all its member nations. SHOPs and other NGOS and INGOs were the most diligent and committed lobbyists behind the UN platform. The lobbying work was conducted by all SHOPs and concerned NGOs in the form of a loose alliance. Immediately after the adoption of the Asian and Pacific Decade, ESCAP (1994) adopted the Agenda for Action for the Asian and Pacific Decade, with clear policy targets for its member governments to implement, plus regular intervals of review meetings by senior government officials. Among SHOPs and other INGOs and NGOs concerning disabilities, there was concern about how member governments of the UN would implement such a decade. Then came the period when SHOPs had to mediate and conciliate with each other, as well as with other traditional international NGOs, to identify common priority targets for action. This was a sensitive process, given that in the historical development of the disability field, there

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have been rifts, whether strong or mild, among SHOPs of single-disability and cross-disability groups, as well as professional INGOs concerning disability. SHOPs would claim their voice as the "voice" of disabled people or the "voice" of their representative disabled groups, whereas professional INGOs still claim that their networks truly advocate for the ultimate interests of people with disabilities. In the final analysis, the rift boils down to a claim of leadership in the disability field that would be recognized by international, intergovernmental forums and relevant UN forums. In the Asian and Pacific region, the rift has not been strong, as SHOPs in various countries have maintained a close networking relationship with their corresponding traditional NGOs and GOs. In Japan, for example, the disability community has resolved such a rift and agreed to a common national platform, a council-like structure to accommodate all SHOPs and traditional national NGOs to promote UN disability policies. Due to the initiative of this platform in Japan, a regional NGO network for the promotion of the Asian and Pacific Decade (RNN) was founded in 1993 during an international event of NGOs and SHOPs held in Okinawa, Japan. RNN adopted one single mission: to promote the Asian and Pacific Decade. It has since been working closely with the former ESCAP Regional Inter-Agency Committee for Asia and the Pacific (RICAP), which was disbanded in 2000 due to restructuring of ESCAP. The RICAP had been a platform for ISHOPs, NGOs, and INGOs concerning disability to debate issues concerning the decade and to make a common call to UN member governments to fully implement the Agenda for Action. RNN has a loose organizational network with a virtual secretariat and a spokesperson system. The RNN annual meeting is the only INGO platform in the region where all SHOPs meet to identify common values and mission statements. SHOPs in the Asian and Pacific region can also be understood as nodes of a growing network in the fast developing information technology age (Castells, 2000). Such regional networks are creating new forms of relationships and information sharing, which in turn are shaping the power relationships between the state and SHOPs as well as the power relationships among INGOs. SHOPs are making use of Internet networks to solicit political support for their demands on their governments. SHOPs can also be differentiated as to whether they are networks at the national level or hierarchical social structures, sometimes extending beyond the national level to the region and the world. Networks are flexible and adaptable forms of organization, able to evolve with their environment and with the evolution of the nodes that compose the network. The RNN is very close to the ideal type of social network. Such a networking structure, however, faces substantial difficulty in coordinating functions, in focusing resources on special goals, and in managing the complexity of a given task beyond a certain size of the network (Castells, 2000). The beginning years of the Asian and Pacific Decade witnessed a strong feeling of enthusiasm, empowerment, and optimism among SHOPs and INGOs. Toward

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the latter half of the decade, the sense of optimism gave way to disappointment and a sense of powerlessness, as the UN's attention was drawn to other issues, such as regional arms conflicts and refugee issues. Member nations' commitment to the disability cause has also weakened as their attention is drawn to other pressing demands, such as the regional financial crises and social and political instability in some Asian countries. More than ever before, SHOPs and other INGOs seek a stronger alliance. Therefore, there are now closer and stronger alliance-like meetings between ISHOPs and national SHOPs and with INGOs as well. This further explains the regional SHOPs' common stand to push for an International Convention for the Rights of Disabled Persons together with INGOs (Deng, 2000). This is a typical example of internationalization's leading to a disability alliance based on a common mission and a clear political objective but on the grounds of diversity, as well as the identification of a common target (i.e., the UN and its member governments). It is still too early, however, to predict what kinds of actions this alliance would take in forcing the issues upon UN. Given the nature of the relationship between SHOPs and GOs in a number of Asian countries, it is very unlikely that SHOP networks in the region will adopt drastic strategies, such as protests and demonstrations against GOs, as in the case of world network protests against APEC in 1997 (Ericson & Doyle, 1999). Balance between Global Advocacy and National-Level Sustainable Development Agenda The NGO unit of the World Bank (Edwards et al., 1999: 120) cautions that NGOs have a temptation to "leap-frog" the national arena and go directly to Washington or Brussels, which in sustainable development terms is a serious mistake. Among the key challenges that NGOs have to face in the next decade are how to ensure that international regimes are both implemented effectively and work to the benefit of poor people and poor countries and how to ensure that gains made at the global level are translated into concrete benefits at the grass roots (Edwards et al., 1999: 130). In order to deal with such challenges, NGOs need to develop a range of new skills and competencies in learning, bridging, mediating, dialoguing, and influencing. NGOs need to develop ways of working to build alliances with effective collaboration. NGOs need also to be more willing to cope with rapid changes in the world by regularly updating of new ideas, knowledge, and skills (Edwards, 1997; Edwards et al., 1999: 132). These suggestions are equally applicable to SHOPs and NGOs concerning disability. In the disability field, it is interesting that the global community does not make any concrete policy recommendation, and yet most countries in the region have adopted the practice of employment quotas. SHOPs across the region are generally in favor of the practice and consider that its implementation would bring positive effects in sustaining developments in the disability field. This case is discussed next.

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Self-Help Organizations of People with Disabilities in Asia Employment Quota System: Relevance of Supranational Model Practices

In the countries covered by the present study, SHOPs are active advocates for laws and regulations that serve a positive discrimination purpose. Laws and regulations on quota systems in open employment and in education are commonly found in the region. The quota system in open employment is found in all countries studied other than Hong Kong and Vietnam, for different reasons. For those that adopt such a quota system, there is also a sophisticated system to register disabled people so that they can benefit from the quota system. Funds collected through a levy system from companies not observing fully the quota are being used to support measures promoting employment and can be used by SHOPs and other concerned GOs and NGOs. The effectiveness of such a quota system has yet to be critically assessed. For example, in developed economies like Japan, there has always been incomplete utilization of the quota, even though such a system has been in effect for many years, first as an advisory measure in the 1970s and then as a mandatory measure in the early 1980s. The levy collected from its implementation has, however, become rather substantial and very useful in supporting vocational training. SHOPs in Japan are also benefiting from such levy funds to support their various activities. The levy system has, in fact, become a special tax in support of disabled people. Such a phenomenon is common among countries in the region, that adopt a similar quota system. Mainland China has a quota system and a levy scheme. Levies are being collected by CDPF and its branches directly from companies as funds to support their services. As China is streamlining its tax system and tax collection procedures, however, CDPF may not have a role to play in such levy collection in the future. When national or local revenue departments collect such a levy, it becomes part of the general tax pool. CDPF may not have direct access to such levy, and its exclusive use for rehabilitation may also be changed. Vietnam does not have such a system, as its laws concerning disabled people are still in their early development phase. The SHOPs there are now advocating access laws as well as a fundamental law to protect the rights and welfare of disabled people. When such laws will be enacted is still too early to tell. Hong Kong is another city that does not have a similar quota system, and its government has a long tradition of refusing to introduce such a system. The pros and cons of this system were discussed in the Green Paper on Rehabilitation in the 1990s and were dropped in the White Paper stage (i.e., in the final policy paper for adoption by the Executive Council of the government and endorsement by the legislature). Recently, SHOPs in Hong Kong mounted a new drive or campaign to lobby for such a quota system as a measure to deal with recent financial crises. SHOPs have come together and worked out a common statement in support of the quota system. The government and the financial and economic sectors, however, are still far from being impressed. While these bodies are defending the noninterventionist approach in business and commercial sectors, they also point out the difficulty of implementation when most companies employ fewer than 100 employees. Traditional NGOs are also not optimistic and therefore not mobilized.

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Following the British legal tradition, Hong Kong has instead enacted a Disability Discrimination Ordinance to protect disabled people from discrimination in many areas, including the main area of employment. This ordinance has yet to be assessed. One thing almost for certain is that it will not bring about a levy fund as in the quota system of other Asian countries. While countries in Asia and SHOPs in particular are rather enthusiastic about the quota system, countries in Europe and ILO have reservations about its true impact on employment opportunities for disabled people. Some ILO consultants, in fact, are advising against introduction of the quota system and wish to focus on other, more effective measures, such as job placement etc. This is a very interesting case of globalization. The employment quota system is not recommended by any UN policy. It is, however, found in developed economies, such as Germany, France, and Japan, yet developed nations do not wish to promote such practices, as its impact on creating quality, open employment opportunities has always been in doubt. On the other hand, SHOPs in the Asian and Pacific region are eager to promote such positive discrimination measures. Such contradictions obviously deserve more detailed analysis so that a better informed policy could be promoted at the world level. Internationalization and Leadership Training for SHOPs Since the IYDP, ESCAP has had close cooperation with DPI in providing leadership training to SHOP leaders in the Asian and Pacific region. Such an extensive and extended training program has had significant impact in most Asian countries. For example, key SHOP leaders in Thailand, the Philippines, Vietnam, Pakistan, India, Fuji, Sri Lanka, and other countries are ex-participants of such training. Such training programs are funded through Japan International Cooperation Agency (JICA), a subsidiary of Japan Foreign Affairs, with the special purpose to fund and conduct foreign aid programs. JICA's funding was successfully tapped mainly through the office of a key SHOP leader who later became the first elected senator with disability in the Diet and in 1999 became the first cabinet member with disability. Associated with the funding of leadership training, a specialist with disability has also been seconded through JICA funding to the United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) to conduct such training. The impact of such training on nurturing more SHOPs at the national level is a subject of debate, as access to such training by young leaders is always an issue due to resource limitations and language limitations. The impact of the first two training courses on national leaders has been confirmed without debate. Such leadership at the regional level will no doubt foster a strong sense of mission of SHOPs and, their advocacy functions and, a strong sense of identity as well as create a louder voice of their own. SHOPs have, therefore, become an international phenomenon.

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INTERNATIONALIZATION AND INTERNATIONAL CONVENTION ON THE RIGHTS OF DISABLED PEOPLE Countries in the region vary widely in culture and politics as well as in legal and monitoring practices dealing with discrimination. In spite of such discrepancies, there is a strong political consensus among countries in protecting the rights of disabled people, as shown by the unanimous support of the Asian and Pacific Decade of Disabled Persons, 1993-2002. Therefore, building on the prevailing strong political will and rich experiences of all the countries in the region, the call for the UN to proclaim an international convention on the rights of all people with disabilities is considered long overdue and should be a major target for the new millennium (Deng, 2000). Currently, there are the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN, 1994), monitored by a UN special rapportuer. Member states of the UN are under no obligation to report on the progress of the implementation of the Standard Rules in their respective countries, nor do their submitted reports receive mandatory review and sanction in any UN forums. Since their proclamation, the Standard Rules have received relatively little publicity within UN networks, not to mention in individual countries and the international community. Furthermore, the Standard Rules are criticized as being less than comprehensive in promoting the rights of disabled people. There is now a consensus around the world that the UN Standard Rules could not possibly help the international disability movement deal with challenges of the new millennium. Indeed, the global disability movement has now reached a critical moment in its history. Either the world will ignore the disability cause and turn its attention to other priorities, or it will have to be called upon to act more forcefully and in consensus. Something more powerful is certainly needed, and the answer is an international convention on the rights of all people with disabilities (RI, 1999). Such a convention would recognize the human rights of disabled people and build on the basic principle that disabled people must not suffer discrimination. The convention would provide a common reference against which rights standards can be assessed, and member states, upon ratifying the convention, would be obliged to bring their legislation, policy, and practice in line with the rights standards. The rights standards would also provide common references and barrier-free standards to multinational and bilateral projects that may concern the quality of life of disabled people. Such a convention should be: (1) comprehensive, covering civil, political, economic, social, and cultural rights; (2) universal, applying to all people with disabilities in all situations in the entire world; (3) unconditional, calling on all governments, including those with scarce resources, to take action; and (4) holistic in that all rights are essential, indivisible, interdependent, and equal. In proclaiming the convention, the UN would have to create a high office, for example, a commission on the rights of people with disabilities to monitor progress and review government reports. Such a commission would have to be formed

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by international experts selected by member states. The commission and current and future governmental, statutory, and NGO disability rights monitoring bodies would become very useful and influential global networks. The convention and this new global network would certainly become the center of the disability movement on both national and global levels in the new millennium. The Beijing Declaration for the New Millennium For the first time in the history of the world disability movement, five major, international, nongovernmental organizations as well as several national, nongovernmental organizations convened a World NGO Summit 10-12 March 2000 in Beijing, China, and concluded the Beijing Declaration on the Rights of People with Disabilities in the New Century (CDPF, 2000/ Among other participants, there were five major INGOs: DPI, Inclusion International, RI, the World Blind Union, and the World Federation of the Deaf. In one voice, they called on all concerned with equality and human dignity to ensure the adoption of an international convention on the rights of all people with disabilities. Together they commited themselves to strive for such a legally binding convention on all UN member states. If the UN adopts such an international convention and institutes special commissions to monitor member nations to implement such a convention, the process of internationalization will progress to a new phase. International SHOPs are very eager to promote such an initiative and have made special effort to lobby for UN member countries' support. This will be the most important UN document that SHOPs can use against their governments if their rights are violated. Member nations of the UN cannot use resource limitations as an excuse not to implement such a convention, and developed nations are required to support least-developed nations to implement such a convention. In such a situation, SHOPs are expected to play an even more active role at both national and international levels as major stakeholders of such a convention. Already there are suggestions for an NGO network for the convention, comprising SHOPs and INGOs alike. The proposed convention is a step away from the traditional internationalization process and toward a globalization process, where nations' sovereign rights are subject to close scrutiny as to whether they are in violation of the individual rights as written in the convention. Also the UN commission for monitoring the convention will have judicial power to pass judgment as well as to suggest sanctions, even to the extent of taking cases to international courts.

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6 SHOPs and Leaders in Mainland China

The survey discussed in this chapter was based on 50 completed questionnaires of SHOP leaders in Mainland China, mainly from Beijing, with some from various other parts of the country. Most subjects were leaders from the local to provincial levels of the national federation of disabled persons, the CDPF. The data collected are discussed with the findings of other relevant surveys to provide a preliminary analysis of the dynamics of SHOPs and their leaders in Mainland China. RESPONDENTS' INFORMATION Most of the Chinese SHOP respondents are male adults with physical disabilities. They have been members of their SHOP for a considerable time. Most of them have achieved a postsecondary level of education or beyond. Slightly less than half of them have also obtained professional qualifications. Slightly more than half have been employed as government officials or professionals. A small proportion have served in government advisory committees or as project consultants, even fewer have served in international bodies. No one has served in the UN. Respondents reported that their age was 41-50 (44%) and 31-40 (32%). Seventy-four percent were male, 72% replied that they suffered physical handicaps. Thirty-eight percent reported that they had served as leaders of a SHOP for less than six years, while 58 percent had served more than six years. Respondents reported that their highest education level was at the postsecondary (34%) or tertiary (38%) level, 42% had professional qualifications, 28% reported their occupation as government officials or professionals. Twenty-two percent reported that they had served in government advisory committees. Fourteen percent reported that they had served on the decision-making boards of international bodies other than a SHOP. No respondents admitted that

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they had ever served on UN committees. Ten percent reported that they had undertaken a consultancy project in their country. No respondents admitted that they had undertaken a consultancy project at an international level. The personal quality that 98% considered most necessary for them to become a better leader of a SHOP is organizational know-how and social skills. GENERAL MEMBERSHIP Perception of Gender Distribution of General Membership Sixty-six percent of respondents perceived that the majority of their SHOP members were male; 34%, female. The greater attention that male members gain from leaders and perhaps also their greater level of participation in SHOPs as compared to female members deserve a more detailed discussion about the situation of women and girls with disabilities in Mainland China. This special group of disabled people has already been targeted for proactive measures in the international platform. Lee and White (1998: para 1) point out, "It is a sad fact, however, that neither group [women's group or disabled persons' group] puts much focus on the particular needs, rights and risks that women with disability face on a daily basis. Without this support, women with disability face many barriers to participation in society. Without the opportunity for full participation, women with disability cannot be economically sufficient." Zhao (1998) conducted a longitudinal study in 1990 and 1995 on disabled women living in an inner-city district of the Beijing municipality. She reports that the education level of female PWD has improved since the percentage of illiterate female PWD decreased from 26% to 13% in five years. However, the improvement is still considered far from satisfactory, especially in an era when information technology advances rapidly. PWD often find inaccessible information an obstacle to receive education. Information technology offers more convenient means to receive education (e.g., distance learning via the Internet). To gain benefit from the information technology era, a higher level of basic education is a prerequisite. In a survey done by Ikels (1991), 13 out of 77 male PWD had obtained a postsecondary degree, while none of the 123 female PWD had obtained the same level of education. Zhao's study (1998) has a similar finding, that only 3 out of 119 female PWD in 1995 achieved a college-level education. Concerning employment status, female PWD in China tend to perform better than their counterparts in other developed countries. In Australia during 1993 only 46% of the PWD were employed (Zhao, 1998). In Canada 74% of the female PWD were unemployed during 1997 (Gill, 1996). In China, Zhao's study (1998) reported a 69% employment rate for female PWDs for 1990 and 1996. The dating and marital life of female PWD in general also involves relatively more problems. According to Gill (1996), fewer female PWD are married, compared to male PWD, and among those married, more find problems in their

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marriages. Such dating and marital problems can be further aggravated by inappropriate policies such as the case in the United States, where female PWD's public assistance (such as health coverage) is reduced after marriage, thus, transferring the burden to their partners. In Beijing, female PWD's dating and marital problems are being dealt with more effectively. Zhao (1998) reports that over the years more female PWD are getting married and living with their spouses, and more nondisabled men, including those with a high level of education, married female PWD. Zhao (1998) thinks that the improvement is attributed to affirmative policies of the state (e.g., when a man marries a Beijing disabled woman, he gets a permanent urban residence after some years). One therefore tends to agree with Zhao's (1998: last paragraph) conclusion: "In the five years between 1990 to 1995 there has been considerable improvement in the situation of women with disabilities in China. However, they continue to be on the lower end of the scale with regard to their poor education and employment status. Prejudice and discrimination against them exists even today." Perceived Age Distribution of SHOPs' Membership As in other surveyed territories, membership in Chinese SHOPs tends to be concentrated on adults; 98% of the respondents perceived that most of their members were adults between 22 and 55 years old. Furthermore, 34% of the Chinese respondents considered that elderly people with disabilities were the most disadvantaged group among their SHOP membership. In 1987 China conducted a national census on PWD. According to the survey, the distribution according to age is 21% under 20 years of age, 32% between 21 and 54 years, and 46% over 54 years (Qiu, 1998). According to the findings, the population of the older generation of PWD is even larger than the adult generation, while the younger generation has also reached a proportion that should require the state's special attention. It has also been estimated that by 2050, the proportion of disabled elderly in the whole population will be 1 in 13 (Gui, 1998: 290). It seems that SHOPs may need also to give attention to the young and old generations of people with disabilities. Perceived Distribution of Types of Disability among SHOPs' Membership As in other surveyed territories, people with physical disabilities are given more attention. Sixty-four percent of the Chinese respondents reported that the majority of their members were physically disabled. However, according to the national census on PWD in China in 1996 and quoted in Table 6.1, the population of people with mental retardation and the population with hearing and speech impairment are larger than the population of people with physical disability. Also the people with vision impairment are similar in number to people with physical disability. A SHOP'S membership involvement should therefore be more cross-disability-sensitive.

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Table 6.1 PWD in China by Type of Disability in 1996 Type of Disability 1. Vision impairment

Population

Percentage

8,770,000

14.6

2. Hearing and speech impairment

20,570,000

34.3

3. Mental retardation

11,820,000

19.7

4. Physical handicaps

8,770,000

14.6

5. Mental disorder

2,250,000

3.8

6. Multiple disabilities and other disabilities Total

7,820,000 60,000,000

13.0 100

Source: Qiu, 1998.

A phenomenon worth noting is that 12% of the Chinese respondents perceived that the majority of their SHOP members were nondisabled people, the highest percentage among all surveyed territories. Such a perception, though only in a minority of SHOP leaders, poses a question whether the philosophy and value of self-help is being realized, as well as a challenge to the effectiveness of nondisabled people making contributions to the well-being of PWD. Answers to such questions would inform SHOP leaders as to the future direction of membership recruitment and organizations. Financial Status of PWD Based on the present survey, 60% of the respondents perceived that the financial situation of their members was generally worse than in the mainstream society. The finding in Mainland China is similar to that in most surveyed territories except Japan. This perception is in line with the national estimate that PWD are among the largest sector (13 million) of the 50 million people living in poverty (Guo, 1998: 334). According to CDPF, in 1996 of the 1.2 billion population in China, about 5% (60 million) were PWD (Qiu, 1998). Noting that China is still very much in the developing stage, it is certainly facing a tremendous challenge to find resources to meet all the demands of its people. Deng (1989: 119), chairman of CDPF, recognizes this difficult situation and appeals to all disabled people to face "the challenge of how to use and develop various resources to improve their conditions and return to normal social lives." Changing the Public's Way of Treating SHOP Members As in other surveyed territories, 80% of the Chinese respondents perceived that their SHOP was effective in changing the general public's way of treating its members. There are good reasons for SHOP leaders to believe that with the support of the state, their organizational work has been rather effective.

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In 1988 the government established the CDPF, which absorbed all PWD organizations in the nation. With full support of the state, CDPF representatives keep a high profile in the society and the state. By virtue of its unique position in the State Council's interdepartmental committee, the Coordinating Committee on Measures Concerning Disabilities, as well as having its vice-president as the Coordinating Committee's secretary-general, CDPF has undoubtedly gained strategic advantages to carry out lobbying and negotiation with government leaders (CDPF, 1998a). CDPF's strategic roles not only make substantial improvements in the lives of PWD but also improve the image of PWD in the eyes of the public. Self-Help Philosophy Ninety percent of the Chinese respondents reported that participation in a SHOP had enabled their members to have a clearer understanding of the self-help philosophy; this percentage was the second highest among surveyed territories. ORGANIZATION AND LEADERSHIP Membership Participation Respondents reported that their members participated in the establishment of goals for their SHOP through polling (78%) or conducting studies (74%). The involvement of members is relatively high. The use of research is the highest among surveyed territories. Eighty-six percent of the respondents reported that their SHOP members reached agreement on principles, policies, and strategies for the SHOP through committee decision. Important decisions tend to be determined also by CDPF representatives. In 1986 and 1996 CDPF participated in a national sample census on PWD, which few countries in the world have conducted. Even in the few countries that did a similar census, its magnitude is certainly much smaller than in China. In the census process a large number of PWD participated. We can therefore reasonably infer that SHOP leaders in China have learned from the national exercises. Mainland China SHOPs thus show the highest tendency among surveyed territories in using research to gather important membership information for goal setting. Though CDPF has used a top-down approach in building different levels of organization for PWD in China, it has taken progressive steps to make the federation governed by PWD themselves through constitutional revision in 1998 (CDPF, 1998b). The revision has provided for a larger quota of disabled persons in decision-making bodies of CDPF. Decision-Making Styles The decision-making style of SHOPs tends to be democratic and consultative, and the process is considered effective and efficient in problem solving. Respon-

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dents considered that the decision-making style of their SHOP was democratic (90%) or consultative (38%). Sixty percent of the respondents considered the process of their SHOP'S decision making efficient, while 14% more efficient. Forty-four percent of the Chinese respondents considered the process of their SHOP'S decision making effective in problem solving, while 38% considered it moderately effective. In addition, 66% of the respondents reported that the decisions in branches/committee meetings were made by consensus. Eighty-four percent of the respondents reported that their SHOP leaders performed in the formal committee structure in a consultative manner. While maintaining democratic principles, the executives of SHOPs in China tend to use their authority in practical operations. Respondents reported that the chairperson (82%) or the executive members (76%) of their SHOP prepared the meetings. Respondents reported that the agenda was formulated by the secretary (78%), the executive members (66%), or the chairperson (64%) of their SHOP. Communication among Members Respondents reported that their SHOP members communicated with each other through telephone (84%) or frequent meetings (82%). Basically, the communication pattern is direct interaction, is frequent, and is through small groups. Chinese leaders are especially accustomed to community organization approaches. Individuals are organized into groups, which, in turn, are hierarchically structured so that the higher-level leadership can effectively exert their influence via multiple levels of organizations on even the grassroots individuals with efficiency. Individuals in China are used to living in webs of relationships to the extent that they might not have a sense of individuality. This situation is gradually changing due to the process of modernization and urbanization, as well as central government's approach to trim down its size and devolve some of its traditional functions to NGOs in the society (Tong, 1998). Still, major NGOs are adopting this nationwide web of hierarchical organizational relationships. This might explain why members of SHOPs in China interact with each other more personally, frequently, and closely. Fund-Raising Respondents reported that their SHOP raised funds through soliciting government funding (82%) or fund-raising campaigns (56%). SHOPs are still heavily dependent on government for funding support. Accountability Respondents reported that their SHOP used individual members' feedback (62%) or printed reports (56%) as internal accountability systems. Forty-six percent of the respondents perceived their internal accountability systems as moder-

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77

ately effective, while 50% perceived them as effective to most effective. SHOPs surveyed in China tend to use formal ways to handle external accountability. The system was perceived to be effective. They are highest in using an external audit as an external accountability system compared to other surveyed SHOPs. Respondents reported that printed reports (58%), regular meetings (44%), and external audits (44%) were the systems of external accountability of their SHOP. Thirty-eight percent of the respondents considered their external accountability systems moderately effective, while 56% considered them effective to most effective. Complaint Management Referring complaints to assigned personnel and bringing complaints to committee meetings tends to be the most often used ways to handle different types of complaints. Respondents reported that their SHOP leaders generally handled internal complaints against the organization by referring the complaints to designated personnel (76%) or to committees (68%). Respondents reported that their SHOP leaders handled internal complaints among the membership using similar methods (74%, referral to personnel; 68%, to committees). Respondents reported that their SHOP generally handled external complaints against their organization in the same manner as they dealt with internal complaints (70%, referral to personnel; 66%, to committees). Ninety percent of the respondents reported that their SHOP had never received any complaints about inequitable treatment of nonmembers. Deviant Members Respondents reported that their SHOP counseled (82%) or accepted (64%) their deviant members. Forty percent of the respondents reported that their SHOP was moderately tolerant of deviant members, while 56% indicated that their SHOP was tolerant to highly tolerant of them. Leadership Training Respondents reported that the means of leadership development in their SHOP was in-house training (82%) or individual coaching (68%). Fifty-six percent of the respondents perceived that there were average learning opportunities for their SHOP members, while 32% gave a less favorable reply. Paid Leadership Thirty-four percent of the respondents reported that there were paid organizers in their SHOP, while 58% gave the opposite answer. Seventy-four percent of the respondents reported that their SHOP employed no paid elected members.

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Self-Help Organizations of People with Disabilities in Asia Participation Outside SHOPs

Fifty-four percent of the respondents reported that there were opportunities for their members in to assume advisory roles in GOs. Fifty-six percent of the respondents reported that there were opportunities for their members to assume advisory roles in NGOs. Regard by Local, National, and International Organizations Ninety-four percent of the respondents perceived that their SHOP leaders were positively regarded by local organizations. Ninety percent of the respondents perceived that their SHOP leaders were positively regarded by national organizations. Mainland China SHOP members have the highest percentage of subjects perceiving positive regard by national organizations among the surveyed territories. Thirty percent of the respondents perceived that their SHOP leaders were moderately regarded, while 36% perceived that leaders were highly regarded by international organizations. Services to Members No specific helping service was reported by any significant proportion of respondents to be most equipped to offer by their SHOP. RELATIONSHIP WITH PARTNER ORGANIZATIONS Relationship with Outside Organizations Sixty percent of the respondents reported that their SHOP had partner organizations, the highest among surveyed territories. Advocacy in Relation to Traditional Rehabilitation Services Fifty-four percent of the respondents considered traditional rehabilitation to be moderately helpful, while 26% considered it very helpful. Sixty-eight percent of the respondents reported that they had advocated disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies, while another 22% said they had never done so. Among the respondents who had reported such advocacy activities, 71% reported that their advocacy was welcomed and made concrete improvements. Image of SHOPs Respondents reported that SHOPs were perceived by NGOs as welfare recipients (70%) or good working partners (66%). Respondents reported that SHOPs were perceived by GOs as welfare recipients (68%) or good working partners

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(50%). Respondents reported that SHOPs were perceived by other disadvantaged groups as welfare recipients (58%), good working partners (68%), or strong advocates (60%). Eighty-two percent of the respondents reported that SHOPs were perceived by the general public as welfare recipients. It seems that in spite of CDPF's strategic role in the government and its outstanding achievement over the past decade, PWD are still perceived negatively as people dependent on welfare. In fact, state documents seem to reinforce such a perception. For example, while the Law of the People's Republic of China on the Protection of Disabled Persons covers rights and obligations of PWD, much attention is also given to caring services for PWD. Also the implementation of law does not seem to be particularly effective. The Law of the People's Republic of China on the Protection of Disabled Persons was promulgated in 1990. Since 1990, the Judicial Commission of People's Congress has organized four law enforcement inspecting groups and inspected the enforcement of the laws and regulations in 11 provinces, autonomous regions, and municipalities. The Commission of Education, Science, Culture and Public Health of the National People's Congress has inspected the enforcement of Compulsory Education Law in 29 such administration units. Legal support is also provided to disabled people through government legal support centers in 28 provinces, 56 prefectures or cities, and 32 counties or districts. Given the protection of the fundamental law and legal support services, CDPF still recognizes that it continues to be a problem that PWD do not know how to seek legal advice or cannot afford legal fees (Chen, 1998: 323). Skills and Strategies in External Relations Respondents reported that interviewing (78%), assertiveness (82%), and negotiation (78%) were the skills used by their SHOP in collaboration with GOs. Forty percent of the respondents considered the skills in collaboration with GOs moderately effective, while 52% considered them effective to most effective. Respondents reported that interviewing (92%) and negotiation (90%) were the skills used in collaboration with NGOs. Forty-eight percent of the respondents considered the skills used in collaboration with NGOs moderately effective, while another 50% considered them effective to most effective. Respondents considered interviewing (74%), assertiveness (64%), and negotiation (84%) as skills making SHOP representatives effective in GO advisory committees dealing with policy or resource allocation issues. Concerning the extent of effectiveness of the skills used, 48% considered them moderately effective; 40%, effective to most effective. Respondents reported that interviewing (86%), assertiveness (74%), and negotiation (90%) were the strategies used in seeking alliances in advocacy action on focused disability issues. Fifty-two percent of the respondents considered the strategies used in seeking alliances in advocacy action on focused disability issues moderately effective, while 44% gave a more favorable rating. Respondents reported that interviewing (78%), assertiveness (76%), and negotiation (88%) were the strategies used in seeking alliances and coalitions in advo-

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cacy action on general welfare issues. Fifty-two percent of the respondents considered the strategies used moderately effective, while 36% gave a more favorable rating. Respondents reported that interviewing (72%), assertiveness (72%), negotiation (82%), and legal research (78%) were the strategies used in seeking alliances and coalitions in advocacy action on general issues concerning disability. Fifty-six percent of the respondents considered the strategies used moderately effective, while 34% gave a more favorable rating. Whether the target organization is a GO or NGO the purpose of SHOPs' external relations is collaboration or alliance seeking. Their advocacy focuses on disability issues, issues concerning the public, general welfare issues, policy making, or resource allocation. Interviewing and negotiation are considered effective skills. Other skills also considered effective in some of the mentioned areas include assertiveness and legal research. RELATIONSHIP WITH THE SOCIETY AT LARGE Respondents considered that consciousness-raising (86%) and collaboration (60%) were more effective strategies for a SHOP to seek social changes in the context of the cultural systems in China. Respondents considered that consciousness-raising (74%) and collaboration (72%) were more effective strategies for a SHOP to seek social changes in the context of the political systems in China. Respondents considered that consciousness-raising (76%) and collaboration (60%) were more effective strategies for a SHOP to seek social changes in the context of the legal systems in China. GLOBALIZATION APPROACH TO DISABILITY Seventy percent of the respondents stated that they knew about the UN initiatives and the globalization process in disability as a human rights issue. Forty-two percent of the respondents considered SHOPs' influence as moderately effective as adviser and advocate on UN initiatives concerning disability, while 46% considered the influence more favorable. Fifty percent of the respondents considered SHOPs' influence as adviser and advocate on regional initiatives concerning disability moderately effective, while 40% were more optimistic. Only 10% of the respondents replied that they had participated in such NGO activities at the world level, and this rate of participation is moderate among the surveyed areas. Twenty percent of the respondents replied that they had participated in such activities on the Asian and Pacific regional level, and this rate is highest among those surveyed. The positive attitude of SHOP leaders in China toward international cooperation may be due to considerable successful experience. With both financial and technological assistance from Germany, the China Training Centre for Orthopedic Technologists has been established, which "trains the students in the practice of the Chinese prosthetic service to enable them to master good special technology

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and to have good occupational morals and healthy bodies"(Lin, 1998b: para. 6). Besides Lin also stated on another international occasion of exchange and cooperation efforts, "The China Society of Prosthetics and Orthotics actively takes part in International Society for Prosthetics and Orthotics (ISPO) activities. Together they have successfully organized ten trips abroad for 67 persons to attend international congresses; five visits to China by nine foreign experts; technical exchanges; more than 50 students sent to Europe, America and Japan to receive training" (Lin, 1998a: para. 5). Cooperation with other national and international organizations in the production of devices for physically disabled persons was also mentioned. In borrowing knowledge and technology from foreign countries, Chinese leaders are also aware of the value of their own nation's heritage. Conscious efforts have been made to make the most out of the synergy from the interaction of domestic and foreign knowledge and practical wisdom. For example, the Hospital for Neurologically Disabled Children (HNDC) of Haidian is a branch of Xiyuan Hospital of the China Academy of Traditional Chinese Medicine. HNDC was established to develop traditional Chinese medicine and combine it with Western medicine to practice in a hospital with Chinese characteristics. In HNDC the simultaneous practice of these two streams of medicine has gone on for the last nine years (Ma, 1998). The SHOP leaders in China tend to have a positive feeling toward international participation. Though participation at the world level is still infrequent, their participation at the regional level has increased to become the most frequent among surveyed territories.

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7

SHOPs and Leaders in Hong Kong

The survey discussed in this chapter was based on 50 completed questionnaires of SHOP leaders in Hong Kong. Because of Hong Kong's small size, most SHOPs open their membership to the entire territory. Most subjects selected for the study were leaders of a number of SHOPs of varying characteristics. These SHOPs include parents' SHOPs and SHOPs of people with intellectual challenges. RESPONDENTS' INFORMATION The age distribution of the Hong Kong respondents is widest among surveyed territories. Respondents reported their age as 21-30 (22%), 31-40 (26%), 41-50 (26%), and 51-60 (12%). Slightly more female than male Hong Kong respondents filled out our questionnaire. Distinct from other surveyed territories, a considerable proportion of Hong Kong respondents had intellectual disabilities. Thirty-two percent of the respondents replied that their disability was an intellectual handicap. Forty-four percent of the respondents did not answer the question. Though Hong Kong has a high level of literacy and development in the region or even in the world, to our astonishment its SHOP leaders have obtained the lowest education level. Respondents reported that the highest education level that they had achieved was primary (50%) and secondary (34%). Since educational achievement is relatively low, it is not surprising to find that only 10% of the Hong Kong respondents admitted that they had professional qualifications. Relatively, a smaller portion of respondents are employed. In addition, 26% of the respondents reported that their occupation was agricultural worker or manual worker. Seventy percent of the respondents reported that they had served as a leader of SHOP for fewer than six years; 18% had served more than six years. The

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personal quality that respondents considered most necessary (90%) for them to become a better leader of SHOP was decision-making ability and social skills. GENERAL MEMBERSHIP Gender Distribution and Feminization of Carers Forty-six percent of the respondents perceived that the majority of their SHOP members were female; 38%, male; 16%, the same for both sexes. Second to Taiwan, Hong Kong is a place among other surveyed territories where female membership is perceived more than male. Thirty-six percent of the respondents reported that the majority of their members were relatives of the disabled, 34% indicated that the majority were mentally handicapped and, 10% indicated that the majority were either physically handicapped or chronically ill. Thirty-eight percent of the respondents also reported that the nature of their SHOP was family carers of disabled people, while 58% indicated the nature as disabled people. Similar to Taiwan but different from other surveyed countries, the relatives of PWD are an important component of the surveyed SHOP in Hong Kong. Hong Kong has become more concerned about the well-being of family carers. As reported by the author and his colleague in territory-wide research on family carers in Hong Kong (Kwok et al., 1997), feminization of caregiving is a significant phenomenon, as females and older persons (56 years and above) prevailed as the primary caregivers. The female majority of membership of the surveyed SHOPs in Hong Kong may reflect the phenomenon that a significant proportion of SHOPs in Hong Kong are organized for carers who are female. The research just quoted also reported that the well-being of the old and female carers was threatened, as they were likely to report a higher frequency of personal problems due to the caring work (Kwok et al., 1997). Therefore, the perceived female majority in membership characteristic of the surveyed SHOPs, particularly those of parents' groups, indicates that the females are again taking on more caring responsibilities than are their male counterparts. Age As in other surveyed territories the membership of surveyed SHOPs in Hong Kong concentrates on adults. Ninety percent of the respondents reported that most of their members were adults between 22 and 55 years old. Financial Status of PWD As in to Japan, people with disabilities cannot be simply equated with poor people. Fifty percent of the respondents reported that the financial situation of their members was generally worse than in the mainstream society, while 42% indicated that the situation was about the same. Table 7.1 shows that Japan and Hong

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Table 7.1 GNP per Capita (Current Price), 1995-1999 Country/Territory

GNP per capita (USD) 1995

Japan Hong Kong Taiwan Thailand The Philippines Mainland China Vietnam

1997

1999

39,720

38,350

32,030

23,120

25,290

24,570

12,686

13,592

13,235

2,760

2,770

2,010

1,040

1,240

1,050

520 250

710 320

780 370

Note: Taiwan's figures are compiled by Directorate General of Budget, Accounting, and Statistics, Executive Yuan. Source: World Development Indicators, World Bank.

Kong have the highest gross national product (GNP) among the surveyed territories. Putting the two types of figures together, we may infer that the more favorable the financial situation of a society as a whole, the better the chance that PWD in that society have a similarly favorable financial situation. The possible explanations are the relatively stronger public economy and larger amounts of private donations and contributions as the people enjoy a higher level of income. Disadvantaged Group Respondents' responses cannot identify any distinct groups as the most disadvantaged groups among their SHOP membership. Self-Help Philosophy Seventy-six percent of the respondents considered that participation in a SHOP had enabled their members to have a clearer understanding of the self-help philosophy. The finding is similar to that from other surveyed territories. ORGANIZATION AND LEADERSHIP Membership Participation Hong Kong SHOPs tend to involve the participation of their members in important issues. Respondents reported that their members established goals for their SHOP through polling (72%), general meetings (66%), and voting (56%). In addition , respondents reported that their SHOP members agreed on principles for policies and strategies through committees' voting (74%) and all-member voting (52%).

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Self-Help Organizations of People with Disabilities in Asia Communication among Members

The members of Hong Kong SHOPs tend to use multiple means to communicate with each other. Their interaction tends to be direct and frequent, indicating that the size of their SHOPs may not be big. Respondents reported that their SHOP members communicated with each other through gatherings (94%), telephone (92%), meetings (78%), and publications (76%). Communication using the first three means is reported to be frequent to very frequent. Fund-Raising Hong Kong SHOPs tend to raise funds from various sources by different means. Respondents reported that their SHOP raised funds through fund-raising campaigns (84%), members' contributions (68%), and solicited government funding (38%). Most of the welfare services in Hong Kong depend on two types of funding resources, governmental and nongovernmental. Basically, the former subsidizes most of the institutionalized rehabilitation services, while the latter supports the alternative or pioneer projects that the former does not subsidize. SHOPs are not considered an institutionalized rehabilitation approach in Hong Kong; therefore, they have to depend less on governmental support and more on (nongovernmental support). Because of the economic turmoil in the late 1990s, the rapidly expanded welfare services in Hong Kong witnessed before 1997 now face many problems, including a sudden squeeze of funding from both governmental and nongovernmental sources. Welfare service administrators have to compete with each other for financial resources from different sources via different means (Kwok, 1999). The ability to raise funds will become more and more important for the existence of welfare service organizations in Hong Kong, including SHOPs. Decision Making Styles Respondents considered that the decision-making style of their SHOPs was democratic (62%) or consultative (54%). Eighty-eight percent reported that their SHOP leaders performed in formal committee structure in a consultative manner. Respondents reported that the decisions in branches/committee meetings were made by voting (62%) or consensus (56%). Concerning the efficiency of decision making, 38% of the respondents considered the process of their SHOP'S decision making moderately efficient; 24%, less favorable; 28%, more favorable. Concerning effectiveness, 28% of the respondents considered the process of their SHOP'S decision making moderately effective in problem solving, while 48% of them considered it effective to extremely effective. Though democratic, the leadership of Hong Kong SHOPs does not seem to be laissez-faire in practice. Respondents reported that the chairperson (76%) or the

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secretary (58%) of their SHOP prepared the meetings. Similar proportions reported that the agenda was formulated by the chairperson (60%) or the secretary (62%) of their SHOPs. Accountability The Hong Kong SHOP leaders tend to use formal versus personal means as either an internal or an external accountability system; they consider both systems effective. Respondents reported that their SHOP used newsletters (68%), printed reports (58%), and regular reporting meetings (52%) as internal accountability systems. Thirty-six percent perceived their internal accountability systems as moderately effective, while 46% perceived them as effective or better. Concerning the system of external accountability, respondents reported that their SHOPs used newsletters (60%) or printed reports (56%). Thirty-six percent considered their external accountability systems moderately effective, while 48% considered them effective or better. Complaint Management The Hong Kong SHOP leaders tend to use committee meetings to handle complaints, whether such complaints come from internal or external sources and no matter against whom the complaints are made. Respondents reported that their SHOP leaders dealt with internal complaints against the organization as a whole (72%) or against any specific members (54%) by bringing them to committee meeting. Respondents reported that their SHOPs dealt with external complaints against their organization as a whole (54%) or against any specific members (50%) by bringing them to committee meetings. Seventy-two percent of the Hong Kong respondents reported that their SHOPs had never received any complaint about its inequitable treatment of nonmembers. Deviant Members The Hong Kong SHOPs tend to be fairly tolerant of deviant members. Fortyeight percent of the respondents reported that their SHOPs were moderately tolerant of deviant members, while 38% indicated that their SHOPs were tolerant to highly tolerant of deviant members. Respondents reported that their SHOP counseled (66%), tolerated (50%), or accepted (40%) deviant members. Leadership Training Hong Kong SHOPs tend to use small group learning strategy. The chance for learning is perceived to be moderate. Seventy-four percent of respondents reported that the means of leadership development in their SHOPs was in-house

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training. Fifty percent perceived that there were average learning opportunities for their SHOP members, while 28% gave a more favorable reply. Paid Leadership About one-third of the surveyed SHOPs employed paid organizers. Thirty-six percent of respondents reported that there were paid organizers in their SHOP, while 58% gave the opposite answer. Eighty-eight percent of the respondents, however, reported that their SHOP employed no paid elected members. The paid organizers employed may be professional workers. RELATIONSHIP WITH PARTNER ORGANIZATIONS Fifty percent of the respondents considered traditional rehabilitation moderately helpful, while 30% gave an even better rating. In addition, 52% of the respondents reported that they had advocated disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies, while another 38% said that they had never done so. Among the respondents who had reported advocacy activity, most reported that their advocacy was welcomed but that less than half of these activities were being followed up. The traditional rehabilitation approach also has many shortcomings; it reinforces the dependency of the cared-for and carers, and has high staffing costs, and uncertain service qualities. Since the 1990s, the government has been trying to reengineer the whole welfare system, with a more flexible subvention system and sets of clearer indicators of service quality performance. Given this context, community-based rehabilitation (CBR) is suggested as one of the alternatives. A pilot CBR program was conducted in the early 1990s, and the project concluded that, the CBR approach should perform a networking function, serving as an interface between formal and informal services. Kwok et al. (1997: 2nd to last paragraph) stated: The CBR team should also carry out community development functions with a dual focus, i.e. community and family foci. The community-focused function is to mobilize and develop local leadership to support community based disability measures, to organize public education programmes and facilitate interfacing between specialist rehabilitation organizations and general social services organizations. The family-focused function is to render care management services so as to facilitate and support the family caregivers, to enlarge their informal support networks, and to assist the family in an equitable division of responsibilities in care work. In our survey the Hong Kong SHOP leaders seem to have more confidence in using the CBR approach to deliver services. Respondents considered leadership training (44%) and CBR (34%) as activities that their SHOPs were most equipped to offer.

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Leaders' Participation Outside SHOPs When compared with other surveyed territories the chance for Hong Kong SHOP leaders to assume advisory roles in GOs and NGOs is high. In our survey 60% of the respondents reported that there were opportunities for their members to assume advisory roles in GOs, the highest among the surveyed territories. Sixty percent reported that there were opportunities for their members to assume advisory roles in NGOs, the second highest among all surveyed territories. Regard by Local, National, and International Organizations The Hong Kong SHOP leaders tend to receive high regard from all levels of organizations. Sixty-four percent of respondents perceived that their SHOP leaders were moderately regarded or highly regarded by local organizations, 40% perceived that their SHOP leaders were moderately regarded or highly regarded by national organizations, and 48% perceived that their SHOP leaders were moderately regarded or highly regarded by international organizations. Relationship with Outside Organizations Thirty-four percent of the respondents reported that their SHOPs had partner organizations, while 58% of them replied negatively. It seems that SHOPs in Hong Kong have a self-reliant attitude. In fact, they have to compete like other NGOs in the community for resources. Advocacy for Resource Reallocation Forty-eight percent of respondents reported that they had advocated for reallocation of government and society resources in favor of SHOPs to deliver service to their members. Among those who reported such advocacy activities, most reported that such suggestions were welcomed by GOs but that not all were follow up with action. Among those who reported the advocacy activity, about two-thirds reported that such suggestions were welcomed by NGOs. Image of SHOPS The image of SHOPs in Hong Kong varies. In the eyes of NGOs and other disadvantaged groups, SHOPs are believed to have a positive image. Sixty-eight percent of the respondents thought that SHOPs were perceived by NGOs as good working partners. Respondents thought that SHOPs were perceived by other disadvantaged groups as good working partners (44%) strong advocates (36%). On the contrary, SHOPs' image in the eyes of GOs and the public was less favorable, 52% of the respondents thought that SHOPs were perceived by GOs as welfare recipients, and 48% thought that SHOPs were perceived by the general public of Hong Kong as welfare recipients.

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Concerning the promotion of SHOPs' public image, 66% of the respondents perceived that their SHOP was effective in changing the general public's way of treating their members, the lowest percentage reported from SHOPs among the surveyed territories, given that the efforts made by the rehabilitation community and the PWD themselves have been increasing over the years. Skills and Strategies in External Relations Most Hong Kong respondents considered interviewing skills the most effective skill in collaboration with either GOs or NGOs. Respondents reported that interviewing (82%), assertiveness (76%), presentation (62%), and legal research (62%) were the skills used by them in collaboration with GOs. Fifty percent of the respondents considered the skills in collaboration with GOs as moderately effective, while 34% of them gave a better rating. Respondents reported that interviewing (86%), negotiation (72%), and legal research (56%) were the skills used in collaboration with NGOs. Forty percent of the respondents considered the skills that they used in collaboration with NGOs moderately effective, while 40% gave a better rating. In making SHOP representatives effective in GO advisory committees dealing with policy or resource allocation issues, the skills of interviewing, assertiveness, negotiation, and legal research are, respectively, considered by 78%, 66%, 64%, and 58% of the respondents as effective skills. The same four skills are also considered effective in seeking alliances in advocacy action on focused disability issues, on general welfare issues, or on general public concerned disability issues. RELATIONSHIP WITH THE SOCIETY AT LARGE Consciousness-raising was considered the most effective strategy for SHOPs to use to seek social changes in different contexts: 92% in a cultural contextt 80% in a political context, and 76% in a legal context. GLOBALIZATION APPROACH TO DISABILITY The participation of Hong Kong SHOP leaders at the regional level is highest among surveyed territories, and participation at the international level is also relatively high. Though their knowledge about UN initiatives and the globalization process in disability is relatively limited, their confidence in SHOPs' influences as adviser and advocate on UN or regional initiatives concerning disability tends to be high. Forty percent of the respondents replied that they had participated in such activities in the Asian and Pacific regional level, the highest percentage among those surveyed. Twenty-eight percent of the respondents replied that they had participated in such NGO activities at the world level, a moderate rating among those surveyed. These findings, however, are not totally consistent with the findings in other parts of the questionnaire.

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The majority of the Hong Kong SHOP respondents themselves had never participated outside their own SHOP as adviser or decision maker. Seventy-eight percent of the respondents reported that they had never served on government advisory committees, and 84% had never served on the decision-making boards of international bodies other than a SHOP. No respondents admitted that they had ever served on UN committees. Only 4% of the respondents reported that they had undertaken a consultancy project in Hong Kong. Only 2% of the respondents admitted that they had undertaken a consultancy project at an international level. Fifty-six percent of the respondents replied that they knew about the UN initiatives and the globalization process in disability as a human rights issue, the lowest among those surveyed; however, 28% of the respondents considered SHOPs moderately effective as advisers and advocates on UN initiatives concerning disability, while 40% rated the influence more favorably and 20% less favorably. Thirty-four percent of the respondents considered SHOPS' influence as advisers and advocates on regional initiatives concerning disability as moderately effective, while 36% were more optimistic, and 18% less so. Due to the inconsistency, the extent to which Hong Kong SHOP leaders participated actively outside their SHOP should receive further study.

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8

SHOPs and Leaders in Japan

The survey discussed in this chapter was based on 50 completed questionnaires of leaders of one SHOP in metropolitan Tokyo, Japan. The SHOP studied is affiliated with a national federation of disabled persons promoting, among other missions, the independent living movement. RESPONDENTS' INFORMATION The typical Japanese respondent is a male adult with a physical disability. He has received postsecondary education but has no professional qualifications. He works in the welfare sector and has served as a leader of a SHOP for fewer than six years. Participation in national or international activities as adviser or consultant is limited. He needs training in organizational know-how to become a better leader of his SHOP. A more detailed description is given next. The age distribution of the respondents themselves is among the widest among survey territories. Respondents reported that their age was 21-30 (14%), 31-40 (26%), 41-50 (36%), and 51-60 (10%). Significantly, more male (58%) respondents than female (32%) respondents filled out our questionnaire. Seventy-two percent of the respondents replied that their disability was physical, 10% that it was a chronic illness, and the rest gave no answer. Respondents reported that the highest education levels achieved were secondary (54%) and tertiary (24%). Educational achievement is relatively higher than in other surveyed territories. Of the 12% who answered the question about professional qualifications, all were in teaching and social work. Fifty-eight percent of respondents worked in the welfare sector, and 10% in the professional and business sectors.

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Seventy-eight percent of respondents reported that they had served as leaders of the SHOP for five years or less; 22% had served more than five years. The following qualities were considered necessary to become a better leader of SHOP: organizational know-how (42% of respondents gave this answer), ability to grasp a situation (36%), technical or professional knowledge (32%), ability to learn from experience (32%), flexibility (30%), moral courage (30%), creativity (26%), resilience (24%), social skills (22%), self-knowledge (20%), and decision-making ability (14%). GENERAL MEMBERSHIP Eighty-eight percent of the respondents perceived that the majority of their members were people with physical disabilities. All respondents reported that their members were adults, from 22 to 55 years old. Their perception about gender distribution is mixed, as 74% of the 50 SHOP leaders reported that their membership had either a male or female majority. The SHOP surveyed is rather homogeneous in terms of types of disabilities of its membership. Such a phenomenon does not seem to consistent with the general aim of centers for independent living in Japan, which is to support disabled people without regard to type of disability (Nakanishi, 1997). ORGANIZATION AND LEADERSHIP Communication and Group Size The communication between members tends to be direct and informal, using telephone (70%) or gatherings (80%). Generally, we would expect members of a large group to have less opportunity to communicate with each other directly and informally. However, the findings show that the SHOP that we surveyed, though large in size, has communication characteristics similar to that of small groups. Compared to large groups, small groups have the merit of being less bureaucratic, more intimate in interaction, and less dependent on professionals, with more chance to participate personally in developing group norms and group culture, in designing and providing services for peers, in managing and developing the organization, and so on. In addition, members are encouraged to pursue continuous growth through experiential learning via participation. Leadership Style and Development Concerning the leadership style of SHOPs in Japan, 48% respondents reported that their leaders performed by delegation in a formal committee structure. The most frequently reported means of leadership development were in-house training (48%) and individual coaching (42%). The learning opportunities of members were reported to be less than average.

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Membership Participation The degree of direct involvement of members in decision making to establish goals, policies, and strategies tends to be low; only 2% reported direct involvement, but 38% reported decision making by the chairperson. More than half (58%) of the respondents considered that the decision-making style of their SHOP was consultative, while 28% considered it to be directive. Respondents considered the efficiency and effectiveness of their SHOPs' decision making to be slightly lower than moderate. Deviant Members Another way to assess if the culture of a group encourages participation is to observe to what extent it tolerates deviant behaviors. Innovative ideas and actions may be seen as deviant behaviors at first, and the immature rejection of them deprives people of the opportunity to understand them more fully before deciding to accept or reject them rationally. Therefore, the higher the tolerance of a group culture, the more that innovative ideas and behaviors will be expressed, and the more opportunity for its members to evaluate new things. The group finally benefits from an increase in participation, and in the variety of ideas and opinions, greater identity, and quicker growth. According to the survey, the extent to which SHOPs in Japan tolerate deviant behaviors is moderate. Seventy-two percent of the respondents reported that deviant members would be handled by counseling, 38% reported that deviant members would be moderately tolerated, and 38% considered their SHOP was tolerant to highly tolerant of deviants. The culture of Japan at large is considered relatively intolerant to deviant behaviors, and many social processes to impede and terminate those behaviors are activated once such behaviors are observed. There is a saying that disability itself is viewed as deviance in Japan. It is likely that SHOPs' subculture of tolerating deviance tends to be different from that in the main culture. This subcultural shift may be the essence of effective advocacy of SHOPs. Accountability Another way to assess to what extent the leadership governs in accordance with the interest of its group members or its supporters (e.g., financial sponsors) is to examine in what ways they communicate with their constituency, ways that are actually issues related to accountability. According to the survey, SHOPs in Japan tend to adopt newsletters as their internal (58%) and external (76%) accountability systems. The effectiveness of the one-way accountability system is considered moderate or worse.

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Self-Help Organizations of People with Disabilities in Asia Complaint Management

Leaders of the surveyed SHOPs in Japan tend to handle complaints personally. Respondents reported that the leadership of their SHOP handled internal complaints against the organization (68%) or a specific member (70%) personally. Respondents reported that the leadership of their SHOP handled external complaints against the organization (56%) or a specific member (58%) personally. It is believed that Japanese value harmony. Hence, they tend to avoid conflict, especially confrontation. Complaints are easily interpreted as a confrontation and are likely be handled by subtle methods. Besides, giving much discretionary power to executives is also part of the political culture of Japan. The two cultural tendencies may have shaped the way that Japanese SHOP leaders handle complaints. Communication between Leaders and Members If the group is not large and the leaders aim at governing the group's activities according to the interests of their members, they continuously seek the opinion of their members. This is what is likely happening with the surveyed SHOPs in Japan. Half of the respondents reported that the leaders of their SHOP communicated with their members daily or weekly, hours of communication ranging from 1 to 10. Thirty-six percent of the respondents reported that SHOPs' leaders communicated with their members whenever necessary. Paid Leadership Most SHOPs (84%) employed a paid organizer (with or without disabilities). Respondents considered the paid organizers moderately helpful to leadership performance (80%), organizational development (82%), and the resource-gathering ability of their SHOPs (74%). RELATIONSHIP WITH PARTNER ORGANIZATIONS Relationship with GOs and NGOs Forty-four percent of the respondents advocated reallocation of government and society resources in favor of SHOPs' delivering services to its members. Only 18% of the respondents reported that their GOs welcomed the advocacy and supported it with follow-up action. Only 14% of the respondents reported that their NGOs welcomed the advocacy and supported it with follow-up. Strategies to Promote Cooperation The strategy most frequently used by the surveyed SHOPs in seeking collaboration with NGOs or GOs was interviewing, and the averaged effectiveness perceived

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was from ineffective to moderately effective. The choice of a less confrontational strategy is in line with the harmony-seeking culture. Image of SHOPs The perceived image of SHOPs in the eyes of NGOs tends to be positive; 54% of the respondents considered SHOPs as good working partners in the eyes of NGOs, and 36% of them perceived SHOPs as additional resources in the eyes of NGOs. The perceived image of SHOPs in the eyes of GOs tends to be less favorable; 40% of the respondents considered SHOPs as good working partners in the eyes of GOs, 16% of the respondents considered SHOPs as unrealistic leftists in the eyes of GOs, and 34%, as welfare recipients. The perceived image in the eyes of other disadvantaged groups tends to be mixed. While respondents considered SHOPs as good working partners (26%) and additional resources (20%), 46% of them considered SHOPs as strong advocates in the eyes of other disadvantaged groups. The perceived image in the eyes of the public is also not clear-cut. While 50% of the respondents considered SHOPs as additional resources in the eyes of the public, 32% considered SHOPs as welfare recipients in the eyes of the public. Regard by Local, National, and International Organizations Thirty-eight percent of the respondents considered that SHOP leaders received little regard or no regard from local organizations, and 38% considered the opposite (regard or high regard), while 20% considered the regard to be moderate. Seventy-four percent of the respondents considered that SHOP leaders received little regard or no regard from national or international organizations. Fifty-eight percent of respondents (58%) reported that their members had opportunities to assume advisory roles in GOs; (36% said the opposite). Seventy-eight percent reported that their members had opportunities to assume advisory roles in NGOs; 8% said the opposite. The involvement of the respondents themselves in other organizations tends to be limited; 82% of the respondents reported that they had not served in government advisory committees, and 74% reported that they had not undertaken any consultancy project in their country. Activities Most Equipped to Deliver When asked what activities their SHOP was most equipped to provide, half of the respondents reported leadership training, while only 2% said traditional rehabilitation services.

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Perceived Difference between Independent Living and Traditional Rehabilitation Services The survey results indicate that leaders of the SHOPs surveyed in Japan tend to have a negative attitude toward traditional rehabilitation. Forty-eight percent of the respondents considered traditional rehabilitation not helpftil or absolutely not helpful, while 34% considered it moderately helpful. Only 8% considered it helpful. Besides, 60% of the respondents reported that they had advocated for disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies. Only 24% of the respondents reported that their advocacy was welcomed with follow-up actions. The rise of the IL movement, to a certain extent, reflects the dissatisfaction of people with disabilities toward concepts and services of traditional rehabilitation (Pongpaew, 1989; Shiraishi, 1989; Winter, 1989). Nakanishi (1997), a pioneer leader of IL in Japan, considers that the two concepts have inherent conflicts (see Table 8.1). From Table 8.1 it is obvious that the IL movement builds up its concepts, goals, and services through the identification and criticism of the limitations of traditional rehabilitation, which tend to reinforce the dependency of their disabled recipients. Hence, the conflict between the IL movement and traditional rehabilitation is caused by a perceived fundamental difference and cannot be easily resolved. Over the past years, traditional rehabilitation services have also undergone rapid changes, and a new philosophy, new directions, and modern values have been introduced. The differences between the two approaches have indeed narrowed since the beginning of the IL movement. STRATEGIES TO SEEK SOCIAL CHANGE SHOPs in Japan tend to use less confrontational strategies than SHOPs in Western societies to seek social changes. Only small percentages of respondents considered it more effective to use confrontational strategy than other strategies in seeking social change in the context of the cultural (14%), political (12%) and legal systems (18%). Japan is an island country with limited natural resources but frequent natural disasters. Japanese are used to living close together to seek not only psychological security but also cooperation to defend against threats and recover from disasters. Harmony, therefore, is highly valued, and open conflict is consciously avoided. Hierarchical leadership structure and obedience are also upheld. Within this cultural environment it is not strange to find that most of the time since World War II the country has been dominated politically by a single party, the Liberal Democratic Party, and the bureaucracy has had ample discretionary power in its interpretation of the law when it governs. The subculture of SHOPs seems to mirror the main culture, which may be a reason that SHOPs in Japan play their advocacy role in a less confrontational way than do their Western counterparts. Such a subculture, however, is commonly identified among SHOPs in the areas under study.

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Table 8.1 A Comparison of Traditional Rehabilitation and Independent Living Traditional Rehabilitation

Independent Living

What each side expects to improve

Physical and mental disabilities and vocational skills

Dependence on specialists and parents

What should be changed

Individuals with disabilities

Environment (buildings, social attitude, etc.) Contents of rehabilitation

How to solve problems

Assistance and leadership by specialists: doctor physical therapist (PT), occupational therapist (OT), vocational rehabilitation counselor

Peer counseling Advocacy Self-help Removal of social and architectural barriers Consumer control (based on individual's needs)

Social status

Patients

Clients with disabilities (consumers)

Supervisors

Specialists

Clients with disabilities (consumers) Independent living

Goals To maximize activities of (expected achievement) daily living Salaried employment Source: Nakanishi, 1997.

GLOBALIZATION APPROACH TO DISABILITY Respondents replied that they had participated in NGO activities at the world (36%) and Asian and Pacific regional (28%) level. Seventy-six percent reported that they had not served on the decision-making boards of international GOs or NGOs; however, 82% of the respondents answered that they knew about the UN initiatives and the globalization process in disability as a human rights issue. Thirty-eight percent of the respondents considered SHOPs' influences as adviser and advocate on UN and regional initiatives concerning disability as effective to extremely effective. The survey results indicate that the level of participation of Japanese leaders in international organizations is not very high, though most of them recognize that disability has attracted global attention and that SHOPs can exert their influence effectively via playing advisory roles in international organizations. Japan has become more aware of the impact of international exchange in the disability field probably since 1964, when Tokyo hosted the first Paralympics in the country. Japanese underwent cultural shock when they saw that most of their athletes who participated in the Tokyo Paralympics were hospital inmates. In contrast, the Western disabled athletes were people living independently in their communities, with jobs and families of their own (ESCAP, 1997).

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In recent years Japan's initiative in bilateral cooperation has been on the increase through governmental and nongovernmental funding (Yamaguchi, 1998; Yashiro, 1998; Uemura, 1998). Following are some notable examples of bilateral and multilateral cooperation projects relating to support for independent living: the regional networking in wheelchair production initiated in 1991 between organizations from Thailand and Japan (ESCAP, 1997); the cooperation of the Japan Federation of the Blind with countries in the South Pacific region in areas of assistive devices for blind people; and the support of the Asian Disabled People Assistance Group located in Tokyo for Filipino disabled people and their workshops with used sewing machines for production of textile goods (Yamaguchi, 1998).

9 SHOPs and Leaders in the Philippines

The survey discussed in this chapter was based on 50 completed questionnaires of SHOP leaders in the Philippines. The majority of the sampled subjects were leaders from provincial to central levels of a national federation of disabled persons, the KAMPI. RESPONDENTS' INFORMATION Respondents reported that their age was 21-30 (32%), 31-40 (44%), 41-50 (10%), and 51-60 (10%). Significantly more male (64%) respondents than female (36%) respondents filled out our questionnaire. Seventy-four percent of the respondents replied that their disability was physical, while only 10% were visually impaired, and another 8% were hearing-impaired. The majority of the respondents (62%) had a tertiary level of education, while respondents reported that their highest education levels were primary (6%), secondary (18%), postsecondary (12%). Forty-eight percent had professional qualifications in a range of fields, including commerce, accounting, engineering, journalism, computers, medical and paramedical, and teaching. Seventy-eight percent of respondents answered they had jobs; 20% worked as professionals, 14% were in government, 16% worked as personnel in business and welfare sectors, 18% were translators and in other work. Respondents reported that they had served as leader of a SHOP for one year and less (32%), and more than one year and fewer than seven years (50%). The following qualities are considered necessary by respondents to become a better leader of a SHOP: organizational know-how and technical or professional knowledge (68% of respondents gave this answer), ability to learn from experience (58%), decision-making ability (54%), creativity (46%), flexibility (40%), social skills (36%), ability to grasp a

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situation (34%), moral courage (30%), resilience (16%), and self-knowledge (20%). GENERAL MEMBRSHIP Age and Gender Ninety-two percent of the respondents reported that the age distribution of their SHOP'S membership was mostly adults (ages 22 to 55), while the rest (8%) reported that it was mostly young people (age under 21). Forty-four percent of the respondents reported that their ages were between 31 and 40. Respondents reported that the gender distribution of their SHOP was male majority (58%) or female majority (32%); only 10% of them reported that the distribution was the same. Thirty-six percent of our respondents themselves reported that they were female. Most Disadvantaged Groups and Young PWD in the Philippines Respondents reported that the most disadvantaged group of their SHOP'S members was elderly people (44%), women (28%) and children (20%). Among the seven surveyed countries or territories, the population of the Philippines is the youngest, with about 64.7% of its population under the age of 30. In addition, this trend of a large number of younger citizens is expected to continue due to a high birthrate. The high birthrate has a significant implication for the population of young PWD in the country. It has been recognized that one reason for the onset of disabilities is the lack of appropriate care in early childhood. Therefore, one of the three major goals of the Philippine National Plan is directed toward the prevention of disabilities, through the inclusion of measures for disability prevention within all national programs for health, education, and environmental control (De Tavera, 1989). The implementation of this major goal is, however, severely constrained, as the national budget for nondisabled children is already inadequate, with a significant number of them already dropping out of school at an early age. To PWD, especially females, the problem is further aggravated because of lack of accessibility in schools, the lack of adapted materials, and inadequately trained personnel, which hinder the participation of women with disabilities in regular schools (Ilagen, 1999). Though building access codes in the form of legislation appeared as early as the 1990s, the lack of coordination and funding makes implementation far from satisfactory. The absence of a leading national or local government agency for implementing and monitoring compliance with accessibility legislation has resulted in a lack of compliance in nearly all education institutions. Financial restraints are also central causes for the delay in modifying existing educational buildings (ESCAP, 1995: ch. 4). Following the chain of adverse effects, young PWD are brought up with limited education, which, in turn, reduces their capability to adapt to adult lives, and causes difficulties, for example, in finding jobs.

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Women with Disabilities The social status of nondisabled women in the Philippines may be improved nowadays. Women are found working in a variety of city jobs and own or run businesses, and many have obtained professional qualifications. The status of women was also given a boost when Corazon Aquino became president of the Philippines after she successfully overturned Marcos' regime through a peaceful people's revolution. The status of female PWD, however, may not have enjoyed such improvement. Pointed out by KAMPI's president Venus M. Ilagen, women with disabilities are, at best, marginalized or ignored by society and, at worst, are subject to abuse and discrimination (Ilagen, 1999). As a role model to address gender issues in the disability field, KAMPI, the national federation of cross-disability organizations of disabled people, has adopted the following initiatives. First, KAMPI consciously applies the principle of gender equality in leadership selection for grassroots branches and national boards. Approximately 30% of KAMPI's 206 chapters are currently led by women. This figure is high compared to elsewhere in the Asia-Pacific region (ESCAP, 1997: ch. 4). Second, it educates its member leaders to avoid violation of gender equality via leadership training. Within the curriculum of its training program, gender sensitivity is a major item, and leaders are trained not to subscribe to gender stereotypes in any of their activities. Third, KAMPI has adopted affirmative action toward disadvantaged groups, including women with disabilities. For example, in the provision of loans and grants by small enterprises to organizations of persons with disabilities, preferential options are given to women with disabilities, indigenous people with disabilities, and poor parents of children with disabilities (Ilagen, 1998). Type of Disability The majority of a SHOP'S members as reported by 70% of the respondents had a physical disability. Seventy-four percent of the respondents reported that they themselves were physically disabled, and 12% reported that the majority of their SHOP's members were visually impaired. ORGANIZATION AND LEADERSHIP Leadership Training Forty-eight percent of the respondents reported that the means of leadership development in their SHOP was mentoring; 46% of them pointed out that the development was accomplished via professional training within the country, and only 14% of them mentioned the use of overseas training. Forty-eight percent of the respondents considered that there were average learning opportunities for their members, while 30% of them perceived the opportunities as better than average. Thirty percent of the respondents considered that the activity that their SHOP was most equipped to deliver to their members was leadership training.

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Media PWD are minority groups living within the context of the majority. Understanding and support of the general public certainly are beneficial for mainstreaming PWD into independent normal living. The Filipino SHOP leaders recognize the importance of public image and, as reported in the survey, adopt consciousness-raising strategies in seeking social change in cultural, political, and legal contexts. Though a majority (82%) of the respondents considered that their SHOP was effective in changing the general public's way of treating SHOP members, they still think that the image of PWD in the eyes of GOs and the general public has to improve a great deal. According to our survey, 36% of the respondents thought that the image of SHOPs in the eyes of GOs was as welfare recipients, and 40% considered that SHOPs had the same image in the eyes of the general public. To improve the image of PWD or raise the consciousness about the rights of PWD in the Philippines, the mass media must be appropriately utilized. It has been suggested that the existence of extensive media networks in the Philippines makes the media a potent tool to prevent disability and help disabled persons. PWD should, therefore, take an active role to offer information to the general public about the day-to-day struggles of disabled people (Borjal, 1989). Legislation The rights of PWD and the development of related work cannot be put on the right track before related legislation has been enacted and formal sanction has been obtained from the society. Juco (1989), a senator, emphasized that protection and enhancement of the rights of people with disabilities depend most particularly on one vital keystone: legislation. The Philippines enacted an access law in 1983. After nearly 20 years the implementation of the access law is still far from satisfactory due to many problems, including lack of funds, lack of involvement of PWD in the monitoring, limited awareness of professionals and the general public, and decentralization and limited power of national government over local government (ESCAP, 1995: ch. 3-5). Most Preferred Services by SHOPs: CBR The majority of respondents reported that their SHOP is equipped to carry out a CBR approach in working with PWD. Tugwell (1989), a former International Labor Organization (ILO) expert, identifies the characteristics of CBR. First, it develops the capabilities of the people and the community to identify and assess their needs and resources and mobilize what they have to meet their needs. Second, it trains and provides certain skills to indigenous community volunteers, including disabled persons, on prevention and on certain phases of rehabilitation activities, like assessing disabled persons' working capacities and matching them with work

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opportunities and the needs of the community or tapping local resources. Third, it makes use of every resource available in the community such as old machines, expertise, services, and opportunity for employment. Finally, it enables the disabled person to stay in the community and receive rehabilitation services provided by family and neighbors. In 1984 a pilot CBR vocational program, assisted by ILO and started by the Philippine Department of Social Welfare and Development to serve people in either isolated rural or metropolitan slum areas, gained positive results as well as experience from the experiment. The CBR method developed in the Philippines has been tested in remote rural communities, semiurban settings, and depressed areas of metropolitan Manila and has been acceptable to both Christian and Islamic communities (Tugwell, 1989). Now, CBR is reaffirmed as an effective approach in mobilizing indigenous contributions as well as the collaboration of all efforts in the society. In this context SHOPs cannot only play the role of service provider but also act as catalysts pulling different organizational levels into a concerted force to create a positive context for effective collaboration. In the Philippines' experience, CBR is best implemented as a strategy within community development, which means that local communities are considered units of action that, combined with outside assistance, correspondingly seek to stimulate local initiatives and leadership as the primary force for change (Capadocia, 1998). Membership Participation The surveyed Filipino SHOPs tend to involve their members' participation, especially in matters more closely related to them. Seventy percent of the respondents reported that their members established goals for their SHOP via general meetings, while 48% of them reported that the task was done via polling members' opinion and preferences. Eighty-four percent of the respondents answered that their SHOP sought their agreement on principles for policies and strategies via all members' voting. The leaders of the Filipino SHOPs tend to be democratic in decision making, which is considered effective and efficient. Fifty-six percent of the respondents considered the decision-making style of their SHOP as consultative or democratic. Only 8% of them considered their SHOP as directive. Most respondents considered the decision-making process of their SHOP as moderately efficient and effective (82%) to extremely efficient and effective (86%). Sixty-eight percent of the respondents reported that their leaders were consultative in formal committee performance. Accountability Sixty-eight percent of the respondents reported that regular reporting meetings were used as a system of internal accountability to their SHOP members. Most (88%) of the respondents considered the internal accountability system used to be

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moderately effective to extremely effective. A more direct or face-to-face approach tends to be adopted by Filipino SHOPs in internal, relative to external, accountability systems, which also tend to have gained positive feedback from the respondents in their effectiveness and efficiency. Complaint Management Fifty-eight percent of the respondents reported that their SHOP handled internal complaints against the organization by bringing the complaints to a committee meeting. Nearly the same percentage of respondents reported that their SHOP dealt with internal complaints against a specific member by bringing them to a committee meeting (50%) or handling them personally (48%). The surveyed Filipino SHOPs tend to handle internal complaints toward a specific member or the organization as a whole in a more formal and impersonal way. Communication among Members The democratic leadership style may have encouraged communication among Filipino SHOP members. Respondents reported that their SHOP members' communicated with each other via meetings (90%) and gatherings (62%) frequently. Fifty-four percent of the respondents reported that their SHOP members communicated with each other over the phone frequently. The interaction among members tends to be face-to-face, which may imply that they can discuss affairs related to their SHOP directly and frequently in an informal way before making any formal request. Deviant Members Respondents reported that their SHOP would deal with deviant members by counseling (62%) or disciplinary actions (58%). Fifty-six percent of the respondents replied that their SHOP was moderately tolerant of deviant members, while 20% indicated that the deviant members would be highly tolerated. RELATIONSHIP WITH PARTNER ORGANIZATIONS The Philippines has developed a framework for a collaborative approach between GOs and NGOs. The central government is responsible for the legislation work, which offers goals and underpinning principles for both governments at lower levels and the private sectors to follow. The role of a local government is to translate the legislated policies so as to apply to local contexts in order that service objectives are feasible, on the one hand, and, on the other hand, in order that the government machinery does not impede the implementation of relevant programs unintentionally even if concrete supports are not forthcoming. NGOs, including SHOPs, are responsible for the involvement of PWD in making service

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plans, facilitating the provision of services, assessing the effectiveness and efficiency of service programs, and performing advocacy for the PWD. Between SHOPs and local government there are councils or federations that coordinate the cooperation of the two types of organizations. KAMPI serves as such a council on the local level. Involvement of SHOPs and the regard that local or national organizations have toward SHOP leaders are not lacking. Fifty percent of the respondents reported that there were opportunities for their SHOP members to assume advisory roles in either GOs or NGOs. Thirty-six percent of the respondents themselves had served in government advisory committees, and 20% had undertaken a consultancy project in the country, half with payment. Sixty-two percent of the respondents perceived that their leaders were moderately regarded by local organizations, and 30% of them perceived that they enjoyed more than moderate regard. Fifty percent of the respondents perceived that their leaders were moderately regarded by national organizations; 34%, with greater regard. STRATEGIES TO SEEK CHANGE Within the web of relations previously described, SHOPs should choose the strategy in external relations management that maximizes the opportunity for effective collaboration. The results of our survey confirm that the SHOPs in the Philippines have adopted effective strategies in collaboration with different levels of organization dealing with different issues. Respondents reported that they used assertiveness (52%) and lobbying (50%) as strategies in GO advisory committees dealing with policy or resource allocation issues. Fifty-two percent of the respondents considered their strategies in dealing with policy or resource allocation issues moderately effective, while 34% gave a higher rating. Respondents reported that their SHOP used lobbying (56%), negotiation (48%), and assertiveness (44%) as strategies and skills in collaboration with GOs; 58% of the respondents considered the strategies moderately effective, while 30% gave a higher rating. Seventy-four percent of the respondents reported that they used negotiation as a strategy in collaboration with NGOs; 40% of the respondents considered their strategies used in collaboration with NGOs as moderately effective, while 52% gave a higher rating. Respondents reported that they used the strategies of presentation (48%), negotiation (48%), and assertiveness (46%) in seeking alliances and coalitions in advocacy action on focused disability issues; 64% of the respondents considered these strategies as moderately effective, while 34% gave a higher rating. Fifty-two percent of the respondents reported that they used negotiation as a strategy in seeking alliances and coalitions in advocacy action on general welfare issues; 50% of the respondents thought that these strategies were moderately effective, while 36% gave a higher rating.

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GLOBALIZATION APPROACH TO DISABILITY Due to financial and technical limitations, it is vital for the disability sector to go beyond national boundaries to find support and cooperation. Two important examples are of immediate relevance to our discussion. The first example was in 1984, when the United Nations Development Program and the ILO provided funding and technical assistance to a CBR vocational project (Tugwell, 1989). Second, the KAMPI's Breaking Barriers Philippines Project from 1996 in cooperation with the Danish National Society of Polio and Accident Victims provided the federation with approximately US$ 1 million through funds from the Danish Foreign Ministry (KAMPI, 1999). Though the cooperation between the disability sector as a whole and international organizations is frequent, the participation of SHOP leaders in international events is still slight. Only 16% of the respondents themselves had served on the decision-making boards of international bodies, while 86% had never served in a UN committee. Only 4% of the respondents had undertaken a consultancy project at an international level, half with payment. Thirty-eight percent of the respondents perceived that their leaders were moderately regarded by international organizations, and 24% of them perceived higher regard.

10 SHOPs and Leaders in Taiwan

The survey discussed in this chapter was based on 50 completed questionnaires of SHOP leaders in Taiwan, China. The majority of the subjects were leaders from the territory-wide federation of disabled persons or individual SHOPs functioning at a territory-wide or city level. Most of the subjects were from Taipei and Kaohsiung. The questionnaires were first sent by mail to most SHOPs identified from various published lists. The nonresponse rate, however, was rather high, in spite of follow-ups by a second mailing, and, in some cases, by telephone to their offices. The 50 samples were completed after a rather long and time-consuming process. Subjects selected included leaders of parents of disabled persons. RESPONDENTS' INFORMATION Among the surveyed territories the age distribution of Taiwan respondents is the widest. They reported that their age was 21 to 30 (16%), 31 to 40 (28%), 41to 50 (30%), and 51 to 60 (14%). The proportion of female respondents is also the highest: 52%. Another difference from the rest of the surveyed territories is that the majority of the respondents are not PWD, and most SHOPs comprise carers of PWD. Twenty percent of the respondents replied that they were persons without disability, while 34% were carers, and 70% reported that their SHOP was composed of family carers of disabled people. Similar to other surveyed territories, more respondents (52%) reported that they had served as a leader of a SHOP for fewer than six years, while 22% reported that their service exceeded six years. Among the surveyed territories, Taiwan respondents have the highest educational standard. Respondents reported that the highest education level that they had achieved was postsecondary (54%) and tertiary (34%). In line with this high

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educational achievement, a certain proportion of them have also acquired professional status and occupation; 34% reported that they had professional qualifications, and that their jobs were in professional (30%), welfare (26%), and business (14%) sectors. Though they have relatively higher levels of education and occupation, international participation is still rare for Taiwan SHOP leaders. Thirty percent of the respondents reported that they had served on government advisory committees, while 22% reported that they had undertaken a consultancy project in Taiwan. Eighty-eight percent of the respondents reported that they had never served on the decision-making boards of international bodies other than a SHOP, and 92% reported that they had never served on UN committees. No Taiwan respondents reported that they had undertaken any consultancy project at an international level. The personal quality that most Taiwan respondents (92%) considered most necessary for them to become a better SHOP leader is decision-making ability. GENERAL MEMBERSHIP Among the seven territories surveyed two characteristics of membership are unique for SHOPs in Taiwan. They are the only SHOPs that tend to have more female members (64%) than males, and the majority are relatives of PWD (52%) instead of PWD themselves. Other characteristics of the membership of Taiwan SHOPs do not differ very much from those of other surveyed territories. Their members tend to be adults. Though no distinct disadvantaged group is identified, their financial situation is still considered worse than that of their counterparts in the mainstream society. Participation in SHOPs makes them understand more about SHOP philosophy. Most of them have faith in SHOPs' ability to change the public's way of treating SHOP members. Seventy-six percent of the respondents reported that most of their members were adults aged between 22 and 55. Seventy-four percent of the respondents reported that the financial situation of their members was generally worse than in the mainstream society. Seventy-eight percent of the respondents considered that participation in a SHOP had enabled their members to have a clearer understanding of self-help philosophy. Eighty-eight percent perceived that their SHOP was effective in changing the general public's way of treating their members. ORGANIZATION AND LEADERSHIP Decision-Making Styles SHOPs in Taiwan tend to involve members in important decision making. The decision-making process is perceived to be efficient and effective. Respondents considered that the decision-making style of their SHOP was democratic (64%) or consultative (46%). They reported that their members established goals for their

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SHOP through polling (76%) and general meetings (68%). Respondents reported that their SHOP members agreed on principles for policies and strategies through committees' voting (86%) and all members' voting (44%). Ninety percent of respondents reported that the decisions in branches/committee meetings were made by consensus. Concerning effectiveness and efficiency in decision making, 52% of the respondents considered the process moderately efficient, while 30% of them considered the process efficient. Fifty-eight percent of the respondents considered the process of their SHOP'S decision making moderately effective in problem solving, while 22% of them considered it effective. Overall, the leadership style of Taiwan SHOPs is democratic. Respondents reported that their SHOP leaders performed in formal committee structure in a consultative manner (46%) or by delegation (42%). A reason for the members' reported high involvement may be that members' contributions are one of the major sources of needed resources; respondents reported that their SHOP raised funds through members' contributions (74%) and government subsidy (68%). Meeting Preparation Meetings tend to be prepared by paid staff (56%) and a secretary (52%). Fifty-two percent of the respondents reported that the paid staff and secretary of their SHOP formulated the agenda. Communication among Members Within SHOPs in Taiwan the interaction among members tends to be directive, and the communication between leaders tends to be flexible. Respondents reported that their SHOP members communicated with each other through gatherings (82%), telephone (78%), and publications (74%). Sixty percent of the respondents reported that their SHOP leaders communicated with each other whenever necessary. Accountability SHOPs in Taiwan tend to use written means as both internal and external accountability systems; SHOP leaders tend to consider both systems efficient. Respondents reported that their SHOP used printed reports (80%), newsletters (72%), and regular reporting meetings (66%) as internal accountability systems, and 44% perceived their internal accountability systems as moderately effective, while 40%o perceived them to be effective or better. Seventy-four percent of the respondents reported that newsletters were used as a system of external accountability of their SHOP; 46% considered their external accountability systems moderately effective, while 38% considered them effective or better.

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Complaint Management In line with Chinese culture, complaints tend to be handled personally. Other strategies are used, especially when a complaint comes from outside and is made against the organization as a whole. Complaints on inequitable treatment from nonmembers are infrequent. Respondents reported that their SHOP leaders dealt with internal complaints against the organization as a whole by handling them (56%) personally or bringing them to committee meetings (54%). Seventy percent of the respondents reported that their SHOP leaders dealt with internal complaints against a specific member by handling them personally. Respondents reported that their SHOP dealt with external complaints against their organization as a whole by bring them to committee meetings (46%), transferring them to paid staff (42%), or consulting professionals (40%). Forty-six percent of the respondents reported that their SHOP dealt with external complaints against a specific member by handling them personally. Eighty-two percent reported that their SHOP had never received any complaint about its inequitable treatment of nonmembers. Paid Leadership Relative to other surveyed territories SHOPs in Taiwan tend to employ many paid leaders. The support that they received is from a secretariat. Fifty-four percent of the respondents reported that there were paid organizers in their SHOP, while 32 % gave the opposite answer. In addition, 52% of the respondents reported that there were paid elected members in their SHOP, while 44% offered the opposite answer. Seventy-six percent of the respondents reported that the kind of support that their SHOP gave to their leaders was secretariat support. Leadership Training Leadership training in Taiwan SHOPs seems to be territory-based, and chances of receiving training are average. Respondents reported that the means of leadership development in their SHOP was in-house training (56%) or professional training within the country (60%). Fifty-two percent perceived that there were average learning opportunities for their SHOP members. Participation Outside SHOPs Forty-two percent of the respondents reported that there were opportunities for their members in assuming advisory roles in GOs, while 52% offered the opposite answer. Forty percent of the respondents reported that there were opportunities for their members in assuming advisory roles in NGOs, while 52% gave the opposite answer.

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In Taiwan SHOP leaders are perceived to have received more regard from local than from national or international organizations. Forty-eight percent of the respondents perceived that their SHOP leaders were moderately regarded by local organizations, while 46% perceived this regard as more favorable. Forty-two percent of the Taiwan respondents, however, perceived that their SHOP leaders were moderately regarded by national organizations, while 34% perceived this regard as less favorable. Forty-two percent of the respondents perceived that their SHOP leaders were moderately regarded by international organizations, while 38% perceived this regard as less favorable. Deviant Members In Taiwan SHOP leaders tend to be tolerant of deviant members. Respondents reported that their SHOP counseled (62%), accepted (58%), or tolerated (52%) their deviant members. Seventy percent of respondents reported that their SHOP was moderately tolerant of deviant members. Services to Members SHOPs in Taiwan do not seem to be ready to provide services. The kind of activities that they were considered most equipped to deliver was income-generating skills training (18%, the highest percentage group). Traditional rehabilitation services retain a certain popularity. Forty-six percent of the respondents considered traditional rehabilitation moderately helpful, while 30% considered it less helpful and 20% more helpful. Forty-eight percent of the respondents reported that they had advocated for disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies, while 44% said that they had never done so. Among the respondents who had reported on the advocacy activities, more than half of them reported that their advocacy was welcomed and led to positive action. RELATIONSHIP WITH PARTNER ORGANIZATIONS AND SOCIETY AT LARGE Nearly half of the SHOPs in Taiwan (46%) have partner organizations, while 50% of them replied negatively. Most SHOPs in Taiwan have advocated for resource reallocation, and the suggestions are welcomed more by NGOs than by GOs. Accordingly, SHOP leaders perceived themselves as having a more positive image in the eyes of NGOs versus GOs. In addition, they believe that the public tends to perceive them as welfare recipients. Their perceived image in the eyes of other disadvantaged groups is ambivalent, both as partner and as competitor. Eighty-two percent of the respondents reported that they had advocated for reallocation of government and society resources in favor of SHOPs' delivering services to its members. Thirty-eight percent of the respondents reported that such

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suggestions had been welcomed by GOs; 48% reported that such suggestions had been welcomed by NGOs. Fifty-four percent of the respondents thought that SHOPs were perceived by NGOs as good working partners, while 44% thought that SHOPs were perceived by GOs as welfare recipients, strong advocates, or troublemakers. Fifty-four percent of the respondents thought that SHOPs were perceived by the general public of Taiwan as welfare recipients. Respondents thought that SHOPs were perceived by other disadvantaged groups as resources, competitors (50%), or good working partners (40%). Skills and Strategies in External Relations In Taiwan, in seeking collaboration with, or playing advisory roles, in different types of organizations, the skills of negotiation, presentation, or interviewing are most often employed by SHOP leaders, who normally perceived these skills to be moderately effective. Consciousness-raising is the strategy believed to be effective in seeking social changes in different contexts, such as social, cultural, and economic. In seeking collaboration with GOs, respondents reported that negotiation (94%>), presentation (76%), and interviewing (66%) were the skills used. Fiftyfour percent of the respondents considered the skills used moderately effective, while 12% considered them less favorable and 32% more favorable. In collaboration with NGOs, respondents reported that interviewing (82%), negotiation (82%), and presentation (66%) were the skills used. Forty-eight percent of the respondents considered the skills moderately effective, while 12% considered them less favorable and 36% more favorable. Respondents considered negotiation (66%), presentation (66%), or interviewing (60%) as skills making SHOP representatives effective in GO advisory committees dealing with policy or resource allocation issues. Concerning the extent of effectiveness of the skills used, 66% considered them moderately effective, while 16% considered them less favorable and 14% more favorable. Eighty-four percent of the respondents reported that negotiation was the strategy used in seeking alliances in advocacy action on focused disability issues. Sixty-four percent of the respondents considered the strategies that they used in seeking alliances in advocacy action on focused disability issues as moderately effective, while 22% gave a more favorable rating. Respondents reported that negotiation (58%) or interviewing (54%) was the strategy used in seeking alliances and coalitions in advocacy action on general welfare issues. Fifty-six percent considered the strategies used moderately effective, while 20% considered them favorable and 16% more favorable. Sixty percent of the respondents reported that assertiveness was the strategy used in seeking alliances and coalitions in advocacy action on public disability issues of concern to the public. Forty-two percent of the respondents considered the strategies used as moderately effective, while 34% considered them less favorable. Respondents considered that consciousness-raising was a more effective strategy for SHOP to

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seek social changes in the context of the cultural (82%), political (64%), and legal systems (62%) in Taiwan. GLOBALIZATION APPROACH TO DISABILITY As in other surveyed territories, SHOP leaders in Taiwan are familiar with UN initiatives and globalization processes, but their participation at either regional or international levels is relatively low; however, they have a certain degree of faith in their influence on regional or international organizations. Eighty-six percent of the respondents replied that they knew about the UN initiatives and the globalization process in disability as a human rights issue. Only 18% of the respondents replied that they had participated in such NGO activities on the international level. Twenty-six percent of the respondents replied that they had participated in such activities at the Asian and Pacific regional level. Fifty-two percent of the Taiwan respondents considered SHOPs moderately effective as adviser and advocate on UN initiatives concerning disability, while 24% considered the influence more favorable and 20% less favorable. Fifty-six percent of the Taiwan respondents considered SHOPS' influence as adviser and advocate on regional initiatives concerning disability moderately effective, while 28% of the respondents were more optimistic and 12% less so.

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11 SHOPs and Leaders in Thailand

The survey discussed in this chapter was based on 50 completed questionnaires of SHOP leaders in Thailand. The subjects were leaders of the Thai federation of disabled persons, DPT, which is a member of the DPI. These leaders may hold central or provincial leadership positions. RESPONDENTS' INFORMATION The general profile of the Thailand respondent is that he is male, around 35 years of age, and with a physical disability and has served in a SHOP for fewer than six years. The majority of respondents have secondary-level education but no professional qualifications. They work in the business sector and have little experience in participation outside the SHOP. They have never served in government advisory committees, on decision-making boards of international bodies, or on UN committees. They have never undertaken any consultancy project in Thailand or at the international level. They work without pay for the SHOP. They consider organizational know-how as the quality they need most to become a better leader of the SHOP. GENERAL MEMBERSHIP Age, Gender, and Type of Disability In Thailand more attention tends paid to male adults with physical disabilities. Sixty-two percent of the respondents reported that the majority of their SHOPs' members were male. Ninety-six percent of the respondents reported that most of

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their members' ages were between 22 and 55. Eighty percent of the respondents reported that the majority of their members were people with a physical disability. Most Disadvantaged Groups Thirty-four percent of our respondents responded that women were one of the most disadvantaged groups. This finding confirms the view of ESCAP (1997: case study 9) that women are accorded a lower status than men with disabilities and that their educational level is often poor. Financial Status of PWD More than half (60%) of the Thai respondents answered that the financial conditions of their members were generally worse than in mainstream society, while 32% answered that the conditions were about the same. The situation does not seem to have improved significantly from 1989, when a representative of the Council of Disabled People of Thailand pointed out that the living situation of most Thai disabled people was below the average living standard because of poverty, low education, and lack of assistance and facilities (Pongpaew, 1989). Image of SHOPs Sixty-eight percent of the respondents considered their SHOP as effective in changing the general public's way of treating their members. In addition respondents considered that their SHOP was perceived by the public as good working partners (58%), additional resources (52%), and strong advocates (46%). Punongong , president of the Christian Foundation for the Blind in Thailand, still felt that the public holds stubbornly the traditional viewpoint that regards the disabled as burdens who could not cope with life by themselves and therefore must be overprotected or discarded. He recalls a personal experience that illustrates a deep-rooted belief behind the negative attitude toward disabled people. "I asked some girls for help. One of them said, 'My mother told me that the blind are either being punished for past sins or that they have some dreaded disease; either way if we touch you it's bad luck' " (Punongong, 1999: para. 1). The SHOPs' image in the eyes of other organizations is perceived to be more encouraging. Respondents considered that their SHOP was perceived as good working partners (62%) or additional resources (58%) in the eyes of NGOs; 60% and 70% of them considered that their SHOPs had the same image, respectively, in the eyes of GOs. Respondents considered that their SHOPs were perceived by other disadvantaged groups as good working partners (40%), additional resources (56%), and strong advocates (64%).

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ORGANIZATION AND LEADERSHIP Communication among Members Communication among members of the surveyed SHOPs tends to be secondary, that is, not face-to-face. Respondents reported that the members of their SHOPs communicated with each other via mail (68%) and telephone (50%). Only 18% of them indicated that their members communicated through gatherings, and the frequency tended to be low. Fifty percent of the respondents reported that their leaders shared with each other about their SHOPs' formal matters biweekly or monthly. Decision-Making Styles The question whether the group culture of SHOPs in Thailand is democratic cannot yet be answered with certainty. Concerning which methods are used to reach agreement on principles for policies and strategies, respondents reported that their SHOPs used all-member voting (70%) and committee voting (56%). Only 18%) and 6% of the respondents, however, reported that their SHOPs established goals using polling and voting, respectively. Forty-two percent of them reported that their SHOPs conducted studies or organized seminars to set goals. Respondents described the decision making of their SHOPs as democratic (50%) and consultative (36%). Concerning efficiency and effectiveness, 48% of the respondents perceived the decision making of their SHOPs to be moderately efficient, and 16% as efficient to extremely efficient. Forty-two percent of the respondents perceived their SHOPs' decisions as moderately useful in problem solving, while 18% perceived their decision making as effective to extremely effective. In implementation 46% of the respondents reported that their SHOPs' meetings were prepared by their secretary. Respondents reported that their SHOPs' meeting agenda was prepared by their chairperson (40%) or secretary (32%). The leadership style of their SHOPs' leaders was perceived by most of the respondents (70%) as consultative in formal committee structures. Accountability The accountability systems of the surveyed SHOPs in Thailand tend to be impersonal. The internal accountability system uses both printed matter and reporting meetings. Respondents reported that their SHOP'S systems of internal accountability to their members were newsletters (58%) and regular reporting meetings (42%). Sixty-six percent of the respondents considered the internal accountability systems to be effective. The external accountability system tends to use printed matter. Respondents reported that their SHOPs' external accountability systems to their flinders or donors were printed reports (42%) and newsletters (38%), and 64% of them perceived the systems to be moderately effective.

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Fund-Raising Only recently has the development of rehabilitation services for disabled people gathered more resources and gained more progress in Thailand. The inadequate support from the society has caused NGOs to seek support from development aids in overseas countries. For example, in 1997 the National Association of the Deaf in Thailand formed a partnership with Gallaudet University and Ratchasuda College to collaborate on a project called the Thailand World Deaf Leadership project, which aims mainly at organizing university-level programs to train deaf people as professional teachers of Thai sign language. Another example is the Redemptorist Centre, established by Rev. Ray Brennan, which is well known to foreign professionals as an outstanding vocational rehabilitation program. The center trains disabled people as computer or electronic technicians and achieves almost 100%) job placement for its graduates. The center charges the disabled students no tuition or boarding fee. It is supported mainly by donations. When in need of funds for special projects, such as purchasing computers or building a basketball court, the center raises the needed funds via different methods, including submitting applications to NGOs or private companies or, providing computer classes or repair services for a fee in the local community (ESCAP, 1997). From our survey, 56% of the respondents reported that their SHOPs raised funds via organizing campaigns. Twenty-four percent reported that they solicit government funds, while a similar proportion (22%) indicated that they depended on members' contributions. It seems that SHOPs are now more reliant than before on local funding for their activities and services. Complaint Management In Thailand the most common way that SHOPs' leaders used to handle complaints is to bring them to committee meetings. Respondents reported that their leaders brought the complaints to committee meetings when they dealt with internal (50%) and external (48%) complaints against their organization (44%) or a specific member (44%). Nearly half (48%) of the respondents replied that their SHOPs had never received any complaint about their inequitable treatment of nonmembers. Leadership Training In Thailand the most common method used for leadership development in the surveyed SHOPs is in-house training (58%). Seventy percent of respondents considered that their SHOPs provided average opportunities for members to develop leadership, personal growth, interpersonal relationship, government policies, finding resources, and so on.

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Regard by Local, National, and International Organizations The regard shown to respondents tends to be moderate. Respondents reported that their members had average opportunities to assume advisory roles in GOs (54%) and NGOs (40%). Respondents perceived the SHOPs' leaders as moderately regarded by local (66%), national (58%), and international (64%) organizations. No respondent reported on participation outside a SHOP, or served on government advisory committees, on the decision-making boards of international bodies, nor on UN committees. They did not report undertaking consultancy projects in Thailand or at the international level. Paid Leadership Seventy percent of the respondents reported that their SHOPs did not employ a paid organizer. The most common duties of paid organizers were liaison work and organizing activities, and they were perceived to be moderately helpful in leadership performance, organization development, and resource-generating in their SHOPs. Thirty-two percent of the respondents reported that their SHOPs had paid elected members, numbering from 1 to 10; most of their duties were organizing activities and liaison work. Deviant Members Concerning tolerance of deviant members, 70% of the respondents considered their SHOP moderately tolerant, and 26% tolerant to extremely tolerant. Services to Members Forty-two percent of the respondents replied that their SHOPs were most equipped to provide their members leadership training as well as communitybased rehabilitation. Also 32% of them pointed out that income-generating skills training was an activity that they were equipped to provide. RELATIONSHIP WITH THE SOCIETY AT LARGE Fifty-eight percent of the respondents reported that their SHOPs had a special partner organization, that offered significant support in financial resources, professional resources, administration, and legal issues. When asked to rate their relationship with GO or NGO partners, respondents considered the relationship to be average (60% for GOs) and better (66% for NGOs).

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Advocacy in Relation to Traditional Rehabilitation Services Eighty-four percent of the respondents perceived the traditional rehabilitation and welfare organizations to be moderately helpful; 62% of them had advocated that disabled people participate in the decision-making bodies of such organizations. Only 20% of the respondents, however, reported that their suggestions were welcomed with action. Seventy percent of the respondents had advocated for reallocation of government and society resources in favor of SHOPs to deliver services to their members; respondents reported that such suggestions were welcomed with action by relevant GOs (34%) and NGOs (32%). Skills and Strategies in External Relations Presentation is the strategy most commonly used by Thailand SHOPs. Respondents reported that negotiation (38%) and presentation (40%) were strategies used in collaboration with GOs. Sixty-six percent of the respondents considered that presentation was the strategy used in effective collaboration with NGOs. Respondents considered that presentation (48%) and assertiveness (44%) were strategies making SHOP representatives effective in GO advisory committees dealing with policy or resource allocation issues. Respondents reported that negotiation (44%) and presentation (48%) were strategies used in seeking alliance and coalition in advocacy action on focused disability issues. Respondents reported that litigation (60%) and presentation (62%) were strategies used in seeking alliances and coalitions in advocacy action on general welfare issues. Sixty-two percent of the respondents reported that presentation was the strategy used in seeking alliances and coalitions in advocacy action on disability issues of concern to the public. GLOBALIZATION APPROACH TO DISABILITY Sixty-four percent of the respondents answered that they knew about the UN initiatives and the globalization process in disability as a human rights issue. When asked whether they had participated in NGO activities on the international level, 60% replied that they had never done so. Most of the respondents who gave an affirmative answer reported that they had joined such activities annually as participants. When asked whether they had ever joined similar NGO activities on the Asian and Pacific region level, 32% of them said yes, and the most common roles played were participant and observer. Respondents perceived SHOPs' influence as adviser (56%) and advocate (54%) on UN or regional initiatives concerning disability as moderately effective.

12 SHOPs and Leaders in Vietnam

The survey discussed in this chapter was based on 50 completed questionnaires of SHOP leaders in Vietnam. The majority of subjects were leaders of a SHOP based in Hanoi, while the remainder were from other parts of the country, such as Ho Chi Minh City. The Hanoi SHOP is relatively new in Vietnam compared to other traditional disability organizations established long ago by the central government. This SHOP, however, comprises a younger and more educated membership, with leaders holding prestigious occupations as well as important civic positions in advisory and consultative committees in Hanoi city and in the central government. These leaders also maintain an active liaison with INGOs and also frequently attend overseas meetings. RESPONDENTS' INFORMATION The majority of the SHOP respondents in Vietnam are males over 30 years of age. Most of them have physical disabilities. They have been serving a SHOP for fewer than six years. Most of them have achieved a postsecondary level of education or beyond, and more than one out of three have reached the tertiary level of education. Only around a quarter of them identify themselves as professionals, and nearly half of them work in the business sector. In spite of their relatively high educational achievements, they seldom have the opportunity to participate in advisory or decision-making bodies at the national or international level. Most of them believe that participation in a SHOP can enable members to have a clearer understanding of self-help philosophy, and they also have faith in the SHOP'S ability to change the general public's way of treating SHOP members. Among other skills, decision making and organizational know-how are the two

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skills considered important in the improvement of their leadership performance. Detailed statistics follow. Respondents reported that their age was 31-40 (24%), 41-50 (56%), and 51-60 (14%). Significantly more male (72%)) respondents than female (28%) respondents filled out our questionnaire. Sixty-four percent of the respondents replied that their disability was physical, 16% were visually impaired, and 8% were disabled veterans. Respondents reported that the highest education levels achieved were secondary (24%), postsecondary (38%), and tertiary (38%). The 24% answering the question about professional qualifications were spread in a range of fields, including engineering, journalism, translation, and teaching. Eighty-six percent of the respondents had jobs; 46% worked in personnel in the business sector, 18% in personnel in the welfare sector, 10% as professionals, and 6% in government. Ninety-two percent of respondents reported that they had served as leaders of SHOP for six years and more. The following qualities are considered necessary by respondents to become a better leader of SHOP: organizational know-how (82%), decision-making ability (72%), social skills (68%), ability to grasp a situation (52%), ability to learn from experience (52%), moral courage (49%), flexibility (46%), creativity (42%), technical or professional knowledge (36%), resilience (24%), and self-knowledge (20%). GENERAL MEMBERSHIP The majority of SHOP members in Vietnam as perceived by our respondents were males over the age of 22. Most of them had physical disabilities. Their financial situation was worse than that of the mainstream society, and female members were the most disadvantaged group. Women with Disabilities Recent studies on women in Vietnam give some hints as to the situation of women with disabilities in the country. In 1994, there were 18,396,000 women workers in Vietnam, or 52.5% of the labor force. Their participation rate in economic activities was 71% (Anh & Hung, 1997: 85). The number of divorced and unmarried women was five times higher than that for men (Anh & Hung, 1997: 97), and their monthly wage was 65% of that of men (Anh & Hung, 1997:99). According to Nguyen Thao (1995: 207), 85.6% of female workers in light industry have a health status of second grade and lower; 26.0% suffer from lung disease caused by cotton dust and 10.8% due to silicon; 15.1% have "gray skin" disease; 80% in the railway industry have back pain; and 60% suffer from pain due to overwork. In Vietnam, the rate of women attending community health care centers decreased from 90% in 1985 to 85% in 1994 (Ministry of Heath, 1994), and unforeseen complications during childbirth increased from 1,042 cases in 1993 to 1,356 cases in 1994 (Ministry of Health, 1995). Among the disabled population,

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60%) are women, and two-thirds of them are living under the poverty line (MOLISA, 1993). These figures can be studied alongside estimates that among disabled women in the Asian and Pacific region, 32.3% of the disabilities are caused by congenital factors, 47.7% are due to disease and illness, and 20% are due to accidents (Anh & Hung, 1997: 207). Another study confirms evidence of poorer health, health care, and nutrition for women than for men. Stunting is higher for female children than for male, and there is some evidence of a recent increase in the malnutrition of adult women bearing more low birth-weight babies (Fong, 1994). A study conducted by Anh (1998) in Ha Tay Province with a population of 2.21 million found that among the causes of disability for women, 53.1% are congenital, 40.3% are due to disease, and 2.6%) are due to accidents at work. Seventy-eight percent of the respondents reported that the majority of their members suffered from physical disabilities. In line with this finding, 64% of the respondents reported that the membership of their SHOP was mainly male, and 72% of the respondents themselves were male. After all, it is not strange to find the result that 64% of the respondents reported that women were the most disadvantaged group among their membership. Financial Status of PWD Seventy-six percent of the respondents reported that the financial situation of their SHOP members was generally worse than in the mainstream society. ORGANIZATION AND LEADERSHIP Fund-Raising As the government has limited financial capacity, SHOPs in Vietnam have to raise their funds from different sources. Respondents reported that their SHOP raised funds through members' contributions (76%), campaign (72%), and overseas donations (44%). Decision-Making Styles, Membership Participation, and Leadership The leadership style of SHOPs in Vietnam tends to be democratic, though its effectiveness and efficiency are controversial. Members are involved in decision making that governs the activities and decisions of their SHOPs. Most SHOPs are operated by the joint efforts of volunteer leaders. Opportunities for learning are limited, and most leaders are trained by professionals within the country. Important issues governing the activities of Vietnamese SHOPs tend to be decided by the members of the SHOPs. Eighty percent of the respondents reported that their members established goals for their SHOPs via general meetings. 88%

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reported that their members agreed on principles for policies and strategies via all members' voting. Though it is almost unanimous that the decision making in Vietnamese SHOPs is democratic, their effectiveness and efficiency are controversial. Ninety-eight percent of the respondents described the decision-making style of their SHOP as democratic, which was confirmed by 78% of the respondent's reporting that their SHOP leaders were delegatory in formal committee structure. Forty-eight percent of the respondents, however, found the process of their SHOP's decision making as inefficient, while the same percentage found it extremely efficient. Fifty-six percent of the respondents considered their SHOP'S decision making ineffective or worse, while 40%) of the respondents considered it effective or better. The democratic style in leadership can be further supported by the fact that the SHOPs' meetings and their agenda were prepared by the joint effort of their chairperson and executive members. Eighty-eight percent of the respondents reported that their SHOP meetings were prepared by their chairperson, while 76% reported that the meetings were prepared by their executive members. Eighty-eight percent of the respondents reported that the agendas of the meetings were prepared by their chairperson, while 84% reported that they were prepared by their executive members. Paid Leadership SHOPs in Vietnam tend to be run by volunteer leaders. Only 18% of the respondents reported that there were currently paid organizers in their SHOPs, while 78% of the respondents reported the opposite. Similarly, 16% of the respondents reported that there were currently paid elected members in their SHOPs, while 82% of the respondents reported the opposite. Leadership Training In terms of neither quality nor quantity do leadership training activities satisfy SHOPs' members in Vietnam. Eighty-eight percent of the respondents reported that their SHOP developed leaders via professional training within the country; 62% of the respondents perceived SHOPs' learning opportunities for members as limited. Accountability Vietnamese SHOPs tend to use regular meetings and written reports as both internal and external accountability systems, and the effectiveness is more controversial for the former. Respondents reported that the internal accountability systems of their SHOPs were regular reporting (92%), meetings and printed reports (70%). Thirty-eight percent of the respondents considered the internal accountability system ineffective, while 44% considered the system extremely effective. Concerning

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the external accountability system, 74% of the respondents used regular reporting and 64%> used meetings and printed reports, with 26% of the respondents considering the system ineffective and 54% considering it extremely effective. Complaint Management To handle both internal and external complaints against the organization as a whole or a specific member, SHOPs in Vietnam tend to use simultaneously three different methods: bringing them to committee meetings, handling them personally, and/or transferring them to assigned personnel. Respondents reported that their SHOPs' leadership dealt with internal complaints against the organization as a whole by bringing them to committee meetings (92%), handling them personally (72%), and/or transferring them to assigned personnel (70%). Similarly, respondents reported that their SHOPs' leadership dealt with internal complaints against a specific member by bringing them to committee meetings (92%), handling them personally (78%), and/or transferring them to assigned personnel (70%>). Concerning external complaints against the organization as a whole, respondents reported that their SHOPs' leadership would bring them to committee meetings (88%), handle them personally (62%), and/or transfer them to assigned personnel (64%). Similarly, respondents reported that their SHOPs' leadership dealt with external complaints against a specific member by bringing them to committee meetings (84%), handling them personally (66%), and/or transferring them to assigned personnel (56%). In our survey 94% of the respondents reported that their SHOPs had never received any complaint about its inequitable treatment of nonmembers. Deviant Members Leaders of SHOPs in Vietnam tend to perceive deviance as behavior that requires counseling. Eighty-two percent of respondents reported that their SHOP counseled deviant members. In addition, 62% of respondents perceived that their SHOP had little tolerance of deviant members, while 24% perceived the opposite. Communication among Members The means of communication among SHOP members in Vietnam tends to be directly interactive and face-to-face. Respondents reported that their members communicated with each other via gatherings (96%), meetings (90%), and telephone (88%). SHOP leaders in Vietnam tend to communicate with each other frequently no matter on what issues. Respondents reported that their SHOP leaders communicated with each other daily/weekly (46%) or biweekly/monthly (44%). Respondents reported that their SHOP leaders shared with each other about the SHOPs' formal matters daily/weekly (34%) or biweekly/monthly (48%). Respon-

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dents reported that their SHOPs' leaders communicated with each other in general on a daily/weekly (34%) or biweekly/monthly (46%) basis. Most Equipped Services In Vietnam the traditional rehabilitation approach still attracts much attention. Even our surveyed SHOP leaders do not show resistance to the approach. When asked about what type of service their SHOP was most equipped to offer, 32% of respondents replied that it was the traditional rehabilitation service. RELATIONSHIP WITH PARTNER ORGANIZATIONS AND SOCIETY AT LARGE Advocacy in Relation to Traditional Rehabilitation Services Eighty-six percent of the respondents perceived the traditional rehabilitation and welfare organizations to be moderately helpful. Eighty-four percent reported that they had advocated disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies, and 72% reported that such suggestions were welcomed with action. Regard by Local, National, and International Organizations More NGOs than GOs have a positive image of SHOPs in Vietnam. Respondents perceived that the image of SHOPs in the eyes of NGOs was as good working partners (76%) and/or additional resources (64%), while only 50% and 56%) of the respondents, respectively, perceived the same image in the eyes of GOs. There is no consensus on the extent of the regard that SHOP leaders in Vietnam receive from local, national, and international organizations. Overall, the more remote the organization, the less the regard. In our survey 38% of the respondents perceived that their SHOP leaders received little regard from local organizations, while 34% of the respondents perceived that their leaders were highly regarded. From national organizations 42% of the respondents perceived that they received little regard, while 30% perceived high regard. Concerning regard received from international organizations 26% of the respondents perceived that their SHOP leaders received little regard, while 22%) perceived that their leaders were highly regarded. Respondents perceived that the image of SHOPs in the eyes of the general public was as strong advocates (68%), good working partners (64%), and/or additional resources (60%), while 52%) of the respondents thought that they were perceived as welfare recipients. Concerning strategies used in seeking alliances and coalitions in advocacy action in the general public concerning disability issues, 60% to 88% of the respondents reported that they used negotiation, lobbying, and legal research. Sixty-four

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percent of the respondents perceived that such strategies were ineffective, while 22% perceived that they were highly effective. Ninety-two percent of the respondents perceived that their SHOPs were effective in changing the general public's way of treating SHOP members in Vietnam. Skills and Strategies in External Relations In seeking collaboration of GOs, most SHOP leaders tend to use the skills of presentation and negotiation, though they mostly consider the skills ineffective rather than effective. Respondents considered that presentation (92%) and negotiation (74%)) were the strategies and skills used in collaboration with GOs. Sixty percent of the respondents considered such strategies and skills ineffective, while 38% considered them extremely effective. In seeking collaboration with NGOs, most Vietnamese SHOP leaders tend to use presentation and lobbying. Opinion on the effectiveness of the skills tends to be controversial. Respondents considered that presentation (90%) and lobbying (76%) were the strategies and skills used in collaboration with NGOs; 48% of the respondents considered such strategies and skills ineffective, while 40% considered them highly effective. To be effective in advisory committees, Vietnamese SHOP leaders tend to use four skills: presentation, negotiation, lobbying, and legal research, whether dealing with policy or resource allocation issues, focused disability issues, or general welfare issues. More SHOP leaders considered the skills ineffective in dealing with the latter two issues. Sixty percent to 76% of the respondents considered that presentation, negotiation, lobbying, and legal research were strategies and skills making SHOP representatives effective in GO advisory committees dealing with policy or resource allocation issues. Thirty-eight percent of the respondents perceived that such strategies were ineffective, while 36% perceived that they were highly effective. In seeking alliances and coalitions in advocacy action on focused disability issues, 72%> to 92%> of the respondents reported that presentation, negotiation, lobbying, and legal research were the strategies used. Sixty-eight percent of the respondents perceived that such strategies were ineffective, while 18% perceived that they were highly effective. In advocacy action on general welfare issues, 64% to 86% of the respondents reported that presentation, negotiation, lobbying, and legal research were the strategies used in seeking alliances and coalitions. Fifty percent of the respondents perceived that such strategies were ineffective, while 38% perceived that they were highly effective. In Vietnam, whether seeking social changes in the context of cultural, political, or legal systems, SHOP leaders tend to consider collaborative, complementary, and consciousness-raising strategies or a combination of them as effective. Respondents reported that collaborative (86%), complementary (52%), and/or con-

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sciousness-raising (78%) were more effective strategies for SHOPs when seeking social changes in the context of the cultural systems. In the context of political systems, the corresponding percentages were 80%, 60%, and 68%. Finally, in the context of legal systems, the corresponding percentages were 78%, 56%, and 56%. The confrontational strategy is the least selected option in seeking social changes within any context of the cultural, political, and legal systems. SHOP leaders chose the confrontation to aim for cultural (2%), political (4%), and legal (8%>) changes. GLOBALIZATION APPROACH TO DISABILITY Sixty-eight percent of the respondents replied that they knew about the United Nations initiatives and the globalization process in disability as a human rights issue. Furthermore, the chance for a Vietnamese SHOP member to participate as an adviser is greater in NGOs than in GOs. Sixty-four percent of the respondents reported that there were opportunities for their SHOP'S members to assume advisory roles in NGOs, while only 36%o gave the same response regarding GOs. The direct participation of Vietnamese SHOP leaders in NGO activities on both regional and international levels was extremely low. Only 10% of the respondents reported that they had participated on NGO activities on the international level, while 72% had never does so. Only 8% of the respondents reported that they had participated in NGO activities in the Asian and Pacific region, while 88% of the respondents had never done so. Nearly the same proportion of SHOP leaders expressed positive and negative perceptions about the SHOP's influence on UN initiatives concerning disability. Forty percent of the respondents perceived SHOP'S influence as adviser and advocate on UN initiatives concerning disability as ineffective, while 36% perceived the influence as extremely effective. Forty-four percent of the respondents perceived SHOP'S influence as adviser and advocate on regional initiatives concerning disability as ineffective, while 28% perceived the influence as extremely effective.

13 Theoretical Examination of SHOPs in Asia

The present research studied SHOPs from seven territories and countries in the Asian region: Mainland China, Hong Kong, Japan, the Philippines, Taiwan, Thailand, and Vietnam. The area covered is extremely enormous and diversified. The present study, given its limited resources and time, is certainly not doing full justice to uncovering everything of theoretical significance concerning SHOPs. Admittedly, the findings of the present study have to be read in conjunction with its methodological limitations in terms of representatives and validity in theoretical propositions. Given the limitations, the study has generated some interesting findings that should contribute to the theoretical understanding of SHOPs in the region. The present study tried to explore theoretical answers to the questions of whether there are there any significant differences or similarities among SHOPs in the region in the following areas: 1. Organization and leadership: the mission of self-help, membership involvement, decision-making processes, management styles, handling of complaints, leadership development, use of professional paid staff, services to members, fund-raising, and accountability. 2. Social inclusion: participation in, and partnership with, external organizations, advocacy in relation to traditional rehabilitation services, perceived image, strategies in seeking alliances, and engineering macrochanges in society. 3. Globalization: understanding international disability issues and movements, perceived perception in relation to INGOs. If there are any significant differences or similarities, what are the likely explanations? To find answers to the questions, data were collected from archives, both published and unpublished, personal interviews, and a questionnaire survey with selected SHOP leaders. The data were analyzed and interpreted in order to gener-

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ate meaningful propositions to give answers to the preceding questions with theoretical depth and insights.

SHOPS FROM THE PERSPECTIVE OF SURVEYED SHOP LEADERS Survey findings on individual territories and countries are presented in relevant chapters of this book. Here a summary of findings giving major similarities and exceptions is presented under the following headings: organization and leadership, social inclusion, and globalization. Organization and Leadership Self-Help as an Organizational Mission. Self-help is not adopted as a major mission of SHOPs, according to the present study, nor do they display the concept of self-help prominently in their organization names or their mission statements. Nonetheless, they are perceived as effective in helping their members obtain a clearer understanding of self-help philosophy through participation in SHOPs. Involvement of Members in SHOPs. SHOPs tend to establish their planning goals through polling of membership opinion or conducting studies. SHOPs use committees to arrive at agreed upon principles, policies, and strategies, and their important decisions are normally determined by elected representatives in general meetings. Decision Making. The decision-making process of SHOPs tends to be democratic and consensual in nature. Japan shows a slight deviation from this observation; in Japan the chair of a committee is likely to have a greater influence on goal setting, and decisions are likely to be made by consensus. The decision-making style is likely to be consultative rather than directive. The process is considered by most SHOP members as less effective and efficient in problem solving. No general pattern can be identified whether the process is perceived as effective and efficient in problem solving. Committee Dynamics, Communication among Members, and Membership Management. SHOP committees tend to be managed by SHOP executive members and committee chairs, who usually prepare meeting agendas. Taiwan SHOPs show some exception in that they tend to give paid staff and secretary the responsibility to prepare meetings and formulate the agenda. SHOP members tend to congregate into small groups. Within groups, they communicate with each other in a frequent and direct manner through a variety of media (e.g., telephone and group meetings). Within a SHOP as a whole, the use of publications is a popular choice. In Thailand, members of SHOPs are more likely to communicate via mail and telephone and infrequently through gatherings. SHOP leaders, however, are likely to have sharing sessions on SHOPs' formal matters on a biweekly/monthly basis. The leaders of Japan's SHOPs communicate with their members on a daily/ weekly basis, and hours of communication range from 1 to 10. The means of com-

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munication among SHOP members in Vietnam tend to be directly interactive and face-to-face, for example, gatherings, meetings, and telephone. Vietnam SHOP leaders tend to communicate with each other rather frequently. This may also be a result of their smaller size and members' concentration in the downtown area in Hanoi. Handling Complaints and Deviant Members. SHOPs tend to deal with internal or external complaints through different types of committees or assigning such responsibilities to special personnel. SHOPs have not reported any complaints that they discriminate against nonmembers. In dealing with deviant members, SHOPs tend to be tolerant and use counseling to deal with deviant behaviors within the organizations. Such a tolerant approach is found in countries whose mainstream culture may be less tolerant of deviant behavior, for example, Japan. SHOPs in Japan tend to handle complaints by their leadership personally, whether the complaint is internal or external. This is perhaps mainly an indication of Japanese culture's avoiding public exposure of conflicting situations. Leadership. Leadership development is highly valued by SHOPs. Thailand's SHOPs, for example, consider that they are providing opportunities for members to develop leadership, personal growth, interpersonal relationships, government policies, and funding resources. SHOPs' leadership training is usually carried out on an in-house basis or through individual coaching or mentoring. In some countries, professional training opportunities are available to SHOP members. In general, training opportunities for SHOP members are considered not adequate, except in Taiwan, where some SHOP members perceived that their learning opportunities are average. In developing countries, some respondents mention professional training opportunities within the country and overseas. In fact, KAMPI of the Philippines has made a conscious effort to train new leaders with detailed program planning and content. Members who have received the training from KAMPI are groomed to be SHOPs' new leaders, who will, in turn, become trainers for younger new leaders. Use of Paid and Professional Organizers. No general trend can be identified about whether SHOPs employ professional organizers or about the roles that these paid organizers, if any, would perform. In general, elected members are usually not paid staff of SHOPs. An exception is reported in Thailand, where some paid organizers are also elected members and are involved in organizing and liaison work. In Japan, the paid organizers (with or without disabilities) are considered helpful, and their performances are sometimes better than those of SHOP leaders in promoting organizational development and resource-raising. In Taiwan, paid staffs are employed by SHOPs mainly for secretariat support. In Thailand, their most common duties are liaison work and organizing activities, and they are perceived to be moderately helpful in organizational development and resourceraising. Generally, SHOPs do not report any significant problems in using paid professionals to support their organizational work. Provision of Support Services to Members. In Japan, SHOPs provide a range of services, including counseling, accessible transport, and accessible, home-

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based services to support members' independent living. Philippines and Thailand SHOPs consider that they are most equipped to provide their members with leadership training as well as community-based rehabilitation. Some consider income-generating skills another useful option. Generally, SHOPs are unlikely to be involved in provision of institutional services or services with heavy staffing and capital. As discussed earlier, SHOPs tend to perceive such services as nonproactive in empowering PWD. Perhaps another reason is that SHOPs by their very nature are more concerned with outreach to PWD at all levels of the society, and community-based rehabilitation is the more appropriate approach that could reach more people with fewer resources and also activate community development and community organization in the mainstream society. Fund-Raising. SHOPs tend to raise funds through a variety of means (e.g., public fund-raising campaigns and soliciting government support). SHOPs tend to rely on governmental funding for delivering regular and long-term rehabilitation services for their members and other disabled persons in need. In Taiwan, membership contributions are an important source of funding. In Vietnam, the SHOP under study does not receive any government funding support, and its funding source comes from fund-raising, membership contributions, and overseas donations. Accountability. SHOPs tend to use both informal and formal means to make themselves accountable to membership as well as to funding bodies and the public. Informal means include collecting feedback from members and publishing regular reports. Whether or not such informal means are effective is not clear among SHOP leaders. For example, Japan's SHOP tends to adopt newsletters as its internal and external accountability measure, and the effectiveness of this one-way accountability system is considered by its members as moderate or worse. Formal means for accountability include external audit, printed reports, and newsletters, and such measures are generally considered effective. Social Inclusion SHOPs' Participation in, and Partnership with, External Organizations. SHOPs' leaders are likely to be appointed with advisory roles in GOs or NGOs. The majority of SHOP members perceive that their SHOP is positively regarded by local, national, and international organizations. Except in Hong Kong, the majority of SHOP members report partnership relations in service projects with both GOs and NGOs. In this regard, Mainland China SHOPs report the highest percentages of members holding such a perception. Hong Kong SHOPs' relatively small size in both membership and operation, as well as their lack of resources in entering into joint service projects, could explain the exceptional observation. SHOPs under the present study see shortcomings in traditional rehabilitation approaches, for example that such approaches reinforce the dependency of the cared-for and the carers, have a high concentration of professional staffs and expensive facilities, and have bureaucratic structures and procedures. SHOP leaders

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consider that leadership training and community-based rehabilitation services are areas within their competence and expertise. Their partnership relationship with GOs and NGOs in service development is also guided by this strategy. Advocacy in Relation to Traditional Rehabilitation Organizations. In spite of SHOPs' philosophical bias against traditional rehabilitation services, they still consider traditional rehabilitation organizations to be helpful. SHOPs have actively advocated disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies and have generally reported success in such advocacy activities. Perceived Image. The majority of SHOP members perceive that they are seen by GOs and NGOs as welfare recipients plus good working partners. They perceive that other SHOPs see them as welfare recipients, good working partners, and strong advocates. In the eyes of the general public, they still think that they are seen as welfare recipients. In spite of over 20 years of disability awareness campaigns since the United Nations International Year of Disabled Persons, 1981, at various levels, from local to international, SHOP perception is still rather strong that PWD are seen as welfare recipients. This negative perception echoes closely SHOPs' call for empowerment of PWD and raising their self-esteem through a comprehensive range of measures. SHOP leaders in Hong Kong seem to deviate from the survey norm. They believe that they have a positive image among NGOs as good working partners and, among other disadvantaged groups, as good working partners and strong advocates. On the contrary, these SHOP leaders believe that GOs and the public look at them more as welfare recipients. Compared to other SHOP leaders, few Hong Kong SHOP leaders believe that they are effective in changing the public's attitude toward people with disabilities. Strategies and Skills in Seeking Partnerships and Alliances. Whether the target organizations are GOs or NGOs SHOPs' primary purpose is to seek collaborations and/or alliances. In terms of advocacy, SHOPs' strategy is to focus on disability issues, public-concerned disability issues, general welfare issues, and policymaking or resource allocation issues. The skills that they normally adopt and that are found to be effective are personal contacts through interviewing, presentation, and negotiation. Other reported effective skills are assertiveness and legal research. Such skills are considered effective in a wide range of action contexts. Examples can be found in committee work when SHOP leaders act as advisers in GO committees dealing with policy formulation and resource allocation or as partners with other advocates in focused disability issues, in public-concerned disability issues, and in general welfare issues. Strategies in Seeking Macrochanges in the Society. Consciousness-raising and collaboration are the two strategies commonly adopted by SHOPs' leaders, which are found to be most effective in seeking changes in the cultural, political, and legal systems of a society.

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Globalization Understanding International Disability Issues and Movements. SHOP leaders in Mainland China and Japan are likely to know about the UN disability initiatives and the globalization process in disability as a human rights issue. Quite a number of them also consider SHOPs' influence as advisers and advocates on initiatives concerning disability of the UN and INGOs as effective. Hong Kong SHOP leaders, on the other hand, are not likely to know about UN disability issues and the globalization, but their participation in regional-level activities is highest among the surveyed territories, and participation at the international level is also relatively high. They are still confident that they could exert a positive influence on UN and regional initiatives concerning disability. Vietnam SHOP leaders are more mixed in terms of their perception of SHOPs' influence on initiatives of the UN and INGOs. Perception of INGOs. The majority of SHOP members perceive that their SHOP is positively regarded by international organizations, though less so when compared with local and national organizations. Vietnam SHOP leaders are mixed as to the regard that they receive from international organizations. While Mainland China, and Japan SHOP leaders hold a positive opinion toward international participation, few of them personally participate in world-level activities. Despite the reported low level of international participation, their participation at the regional level is the highest among surveyed territories. THEORETICAL IMPLICATIONS OF THE SURVEY FINDINGS The findings clearly present a rather homogeneous perception by SHOP leaders of the characteristics of SHOPs in the seven territories covered. Such similarity is remarkable given that there are indeed tremendous differences in political, social, and economic conditions in those areas. Generally, the areas cover different forms of socialist states with varying degrees of central planning (e.g., Mainland China, Vietnam) and various forms of democratic states with different degrees of capitalism, from laissez-faire to neoliberal (e.g., Thailand, Japan, the Philippines, Taiwan, Hong Kong). There are also tremendous cultural differences in terms of languages, religious beliefs, social stratification, customs, and so on. The sharp differences in economic conditions are even more discernible. The areas have some of the most advanced economies on earth as well as the least developed economies, not to mention the extremely wide gaps in GNP and living standards. The usual approach to select political, cultural, and economic factors as independent factors to account for individual country or territory differences does not seem to make theoretical sense here. Before attempts to suggest any theoretical explanations, we need to look at macroindicators concerning SHOPs in the areas under study. These macroindicators are discussed in previous chapters on organization and leadership, civil society, and globalization.

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ARCHIVES STUDY AND PERSONAL INTERVIEWS ON MACROINDICATORS OF SHOPS Information about key SHOPs in the areas under study is presented and analyzed. Obviously, at the macrolevel, as against the microlevel, of information obtained from the survey, some major differences of the SHOPs are easily identified, concerning the nature of their organization, their central leadership qualities, the scope of their coverage and operation in the country, their status in the political and social systems in the society, and their international orientation. Nature of Organization and Leadership The nature of organization can be analyzed in terms of relationship with the state and relationship among SHOPs in the country as well as organizational complexity. SHOPs' leadership qualities can be analyzed in terms of the presence of transformational and charismatic qualities and organizational and professional skills. Mainland China. CDPF of China shows the most complex organizational structure as well as the largest scale of membership coverage and scope of operation among the areas of study. For CDPF, though an NGO in its strict sense, its legal status as the unified, national disabled persons' organization is confirmed by law and approved by the State Council. It is charged with pseudogovernmental functions to monitor and implement the comprehensive law for the protection of disabled persons. It has branches at practically all administrative levels of the country, from streets and villages to provincial and central levels. There is also a clear administrative relationship between lower levels and upper levels of CDPF branches. The central leadership of CDPF has demonstrated both transformational and charismatic qualities, other than organizational, managerial, and professional skills. CDPF has instilled vision and solidarity among its constituents, creating effective networks with mainstream society at all levels, making an impact on central government and at the national level as well as at the international level on both intergovernmental and nongovernmental levels. Three factors stand out in accounting for CDPF's achievements in organizational development and impact on society: special legislation for the protection of disabled people, State Council support, and CDPF's unique central leadership qualities. Hong Kong. The other extreme of the organizational structure is found in Hong Kong, where not only are SHOPs NGO in nature, but there is also a lack of a federation structure to link all SHOPs in the territory. RAHK is the only cross-disability SHOP in Hong Kong, is a member of the central coordinating council for all NGOs concerning disability, and maintains a loose link with DPI, but not a membership status. RAHK has a simple organizational structure and has not recruited any single-disability SHOPs as organizational members. RAHK's legal status, like that of other SHOPs in Hong Kong, is the same as for all other NGOs, which are provided

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for in the general legislation. There are, however, quite frequent occasions when SHOPs of single- and cross-disabilities come together for public education and advocacy, but such gathering are usually in the form of loose, ad hoc working groups or networks. Attempts to form a federation of SHOPs have been met with passive response from SHOPs. SHOPs in Hong Kong are small in scale and coverage when compared to traditional NGOs. They are, however, active in government advisory committees through the government appointment system and have made a significant impact on legislation and service delivery. In the eyes of the government, SHOPs, whether single-disability or crossdisability in membership characteristics, represent people with disabilities who express their views on rehabilitation services to service providers and government departments concerned and foster a positive image of, and promote the rights of, people with disabilities. Government support for SHOPs, however, is still confined to encouraging them to participate in the formulation of rehabilitation policies and assisting them in their application for office premises at welfare rentals (Secretary for Health and Welfare, Hong Kong SAR Government, 1999: para. 17.25). In spite of long years of lobbying, government is still reluctant to provide financial assistance to support SHOPs' staffing expenses and operational costs. The reason as put by government is that, under existing subvention policy, the government will subvent only the operational costs associated with the provision of certain direct welfare services. Expenditures for the internal administration of an organization, which are not directly related to subvented services, are not covered in the subvention and have to be met by nongovernmental funds. In a way, SHOPs' own maintenance has to be self-reliant, similar to that of other civic organizations. To be self-reliant is a demanding task for a SHOP, as its members usually come from low-income earners. SHOPs in Hong Kong are, therefore, active in fund-raising and in not-for-profit business ventures. Generally, SHOP leaders have demonstrated professional and networking skills but not transformational and charismatic qualities that could unite all disabled people under one organizational umbrella. Still, the achievements of SHOPs in Hong Kong in making an impact on the society, legislation, and service delivery can be accounted for by their leadership qualities. The nonachievement of SHOPs in their organizational development is because of a lack of special and comprehensive legislation concerning disability, government's noninterference, or lack of proactive support for SHOPs' development. In between the two poles of Mainland China and Hong Kong, we can place the Philippines, Thailand, Taiwan, and Japan on the theoretical continuum. The situation in Vietnam, because of the existence of both state-led SHOPs and NGO-type SHOPs, has to be studied in another theoretical dimension. Philippines. KAMPI of the Philippines is not specifically created by law but has received proactive support from government to be the unified, national, crossdisability SHOP. The first appointed sectoral representative was a popular journalist, a civic leader with disability who was, close to high levels of government and who was highly regarded by people of all walks of life. His charismatic leadership

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and personal networks have given a major push to the disability movement in the Philippines. KAMPI has benefited greatly from such a favorable political and societal environment. KAMPI in its early years was a small and simple crossdisability organization with several disabled groups from around the country. Gradually, it has absorbed major national, single-disability groups into its membership. It has since developed a complex organizational structure with membership and chapters or branches from local to provincial and central levels. The number of chapters has increased from 11 at the inaugural assembly to, at present, over 210. There is a superior-subordinate relationship between different levels of chapters, and the leadership is selected through indirect election by their provincial leaders. The president of KAMPI, because of her professional skills, has been noted by the international community as champion of the SHOP movement and of women with disabilities. She has been making a significant impact in both intergovernmental and nongovernmental forums. It is fair to comment that the central leadership of KAMPI has demonstrated both transformational and charismatic qualities, other than organizational, managerial, and professional skills. KAMPI has instilled vision and solidarity among its constituents, created effective networks with mainstream society at all levels, and made an impact on central government at the national level as well as at the international level in both intergovernmental and nongovernmental forums. The National Council for the Welfare of Disabled Persons, the government-led organization concerning disability, holds national consultation with leaders of PWD. It also offers the following support to SHOPs: organizing women with disabilities into "circles of advocates" in the regional areas, strengthening KAMPI as one of the national organizations of diverse disability groups that provide services to other people with disabilities, strengthening SHOPs by providing funds and support as well as linkages with resource partners and allocating a budget for such a purpose, and utilizing organized SHOPs in the organization and strengthening of other similar groups (ESCAP, 1999a: 265). Concrete government support for KAMPI is still relatively limited and includes a low rental for its headquarters, with part of the office premises for services for disabled children. Government has accredited KAMPI as qualified to offer government-supported services to disabled people, including leadership training courses for local branch leaders. In this manner, KAMPI is able to generate some funding for its own organizational needs. Its own organizational maintenance costs still have to rely, in large part, on nongovernmental sources, (e.g., running programs supported by overseas countries). Again, three factors stand out in accounting for KAMPI's achievements in organizational development and impact on the society: special legislation for the protection of disabled people, central government support (which is less proactive as compared to that in Mainland China), and KAMPI's central leadership qualities. Thailand. DPT is by nature an NGO and has legal status similar to that of KAMPI of the Philippines. DPT is not specifically created by law and has not received support from government to be the unified, national, cross-disability

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SHOP. It was founded around the period when the new constitution provided for a sectoral representative of the welfare sector to the Senate, and the founding chair of DPT was elected as the first Senate of this sectoral seat. This special senator has close connections with senior officials and the royal family as well as holding a major influence in the Thailand Council on Social Welfare, a government-supported central coordinating body for the welfare sector, including the disability sector. Patibatsarakich (1998), the first, and former senator with a disability in Thailand elected from the welfare functional constituency under the new Thailand Constitution, notes that through legislation society can more quickly experience a change in attitude toward PWD. In Thailand, it took eight years, from 1983 to 1991, to enact the Rehabilitation of Disabled Persons Act and another three years for its implementation in 1994. The act provides for a National Committee for the Rehabilitation of Disabled Persons, to be headed by the Ministry of Labor and Social Welfare. Other than GO and civic leaders, the minister must appoint not fewer than two qualified persons representing SHOPs. The senator's charismatic leadership has given a major push to the disability movement in Thailand. DPT has benefited greatly from such a favorable political and societal environment. DPT in its early years was a small and simple cross-disability organization with several disabled groups from around the country. Gradually, it absorbed major, national, single-disability groups into its membership. It has since developed into a truly national, cross-disability organization with regional chapters. There is a superior-subordinate relationship between central and provincial levels of chapters, and the leadership is selected through an indirect election by their provincial leaders. DPT is able to create an effective partnership with the Thai National Council of Social Welfare and the Goodwill Industries Thailand, and the latter provides an office for DPT. The president of DPT, because of his professional skills, has been noted by the international community as a champion of the SHOP movement and of accessibility issues. He has been elected regional chair of Disabled Peoples' International. The central leadership of DPT has demonstrated both transformational and charismatic qualities, besides organizational, managerial, and professional skills. DPT has nurtured solidarity among its constituents and, created effective networks with mainstream society at all levels, making an impact on the central government and at the national level as well as at international level in both intergovernmental and nongovernmental forums. Again, three factors stand out in accounting for DPT's achievements in organizational development and impact on society: special legislation for the protection of disabled people, support from the central government (which is less proactive as compared to Philippines) and from a major NGO, and DPT's central leadership qualities. Taiwan. The LWOD is by nature an NGO and a cross-disability federation with membership comprising national organizations and individuals. Its formation was the result of massive social action beginning at the grassroots level during the democratization stage of Taiwan society. One of the key leaders of the disability movement was a popular author and founder of a disabled persons' organization

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with religious and self-empowerment missions. During the movement she was able to unite different groups under a common banner to amend the Rehabilitation Act. The movement succeeded in its mission, and as a result the league was founded to carry the movement further. By the year 2000, the league had increased substantially to over 208 member organizations from most parts of the country. Its legal status is the same as for other NGOs in the country, and it has no special or privileged status in the government. Until now, the league has received substantial support from a major NGO that was founded by the charismatic leader of the disability movement in the early years. The league has continued its effectiveness in uniting disabled people across the country, making an impact in central government, and further improving legislative measures to support disabled people. Three factors account for the league's achievement: a special law to protect disabled persons, support from a major NGO, and the league's central leadership. Japan. Japan until today has had a number of active, national, single-disability organizations of people with disabilities. The JCILC was founded on a philosophy and mission different from those of traditional organizations concerning disability and has its roots in the independent living movement in the West, particularly the United States. JCILC was founded during the UN IYDP and has since made significant progress in networking with independent living centers all over Japan, as well as advocating for government funding support for provision of services supporting independent living. JCILC not only unified disabled people seeking independent living, but also instilled new values about independent living in the Japanese society. JCILC has a close and special relationship with a former senator who was the first elected senator with a disability and also the first DPI vice president for Asia and the Pacific. JCILC was one of the important political bases of this elected senator in both national and international forums concerning disability. This senator later became the first minister with a disability in Japan. Because of his political profile, he has made a significant contribution to the disability movement both in Japan and in the region. Through him there have been significant improvements in legislative measures concerning disability (the enactment of the Japan Fundamental Law on Disability), and also significant financial support to provide services supporting independent living. Also, through him, Japan has become one of the most active contributors to ESCAP supporting leadership training for SHOPs in the region and also for bilateral intergovernmental projects supporting disabled people. Leaders of JCILC also take an active role in national debates concerning disability, local popular elections, and consultancy work in ESCAP and other countries. JCILC does not have an administrative superiority over its member centers, which are all administratively independent. JCILC acts more like a federation of IL centers in the country. Similarly, it has been observed that in Japan, there is no one network or federation-like system as the umbrella of all disabled persons' organizations. The government is also not pursuing such an approach. The Japanese government's support for ILC is in the form of making available new funds for community care services and community living support services

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and encouraging SHOPs to apply to be service providers (ESCAP, 1999a: 147). There are also government-funded Central and Prefecture Centers for Promotion of Social Participation of Persons with Disabilities, the membership and management of which constitute SHOPs. A new service, 110 Human Rights of PWD, an advocate center for PWD, is being installed in all prefectures. Government's direct support to SHOPs as national coordinating bodies is therefore relatively limited. Three factors account for the achievement of the JCILC and its independent living centers: (1) support from a high-level political leader; (2) a comprehensive law protecting the rights and interests of disabled people; and (3) the transformational and charismatic personalities of IL leaders. Vietnam. It is difficult to place Vietnam on our theoretical continuum. Vietnam still has traditional SHOPs and NGOs led by government, as well as small-scale SHOPs founded by disabled people but not yet recognized by government. The Vietnamese government still holds a conservative policy toward NGOs in the society. BF obtains its legal place through the sponsorship of a government-led major NGO in Hanoi. The relationship of the leader with the government is close, and the leaders also act as advisers to government on drafting laws concerning disability and receive international delegations concerning disability. BF leaders have maintained a close relationship with international NGOs concerning disability through their personal contacts and have also received government nomination to attend overseas training courses. The government has shown a growing interest in taking part in international forums concerning disability. Recently, the government consented to be a cohost of Campaign 2001 for the Asian and Pacific Decade of Disabled Persons, 1993-2002. Still, the future development of BF in the country depends very much on government's general attitude and policy toward NGOs. Bright Future's achievement so far can be accounted for mainly by its professional leadership qualities, support from the sponsoring NGO, and support from international NGOs. UNDERSTANDING SHOPS IN ASIA As discussed previously in this chapter, the findings of the present survey present a rather homogeneous perception of SHOP leaders regarding the characteristics on organization and leadership, social inclusion, and globalization of SHOPs in the seven territories covered by the study. Such characteristics are primarily microfactors affecting SHOPs' organization and leadership, and membership management, as well as networking at both national and international levels. As the territories under study are selected from very diverse political, social, cultural, and economic backgrounds, such similarities have to be explained by other factors. One important factor that makes theoretical sense is globalization, which shapes the common microcharacteristics of SHOPs all over the region. The macrofactors that affect SHOPs are also discussed, based on personal interviews and archives. Such macrofactors have shown more differences than similari-

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ties in terms of organizational structure (hierarchy, scope of membership coverage, and services operation), government's affirmative action toward central SHOPs, comprehensive legislation protecting people with disabilities, and transformational and charismatic leadership qualities. A theoretical continuum can be constructed using these key conceptual dimensions. The key cross-disability SHOPs from selected Asian countries can be placed along this theoretical continuum (see Figure 13.1). The relative positions of the key cross-disability SHOPs from selected countries and territories on the theoretical continuum show that those scoring higher positions on the continuum also show higher scores on all the four key factors of, degree of complexity of organization structure, degree of support of government affirmative policy toward SHOPs, degree of comprehensiveness of special legislation protecting disabled people, and degree of recognition of SHOPs' leadership within and outside SHOPs. GLOBALIZATION OF DISABILITY ISSUES The globalization process has been initiated in an active interaction between intergovernmental and nongovernmental forums. The landmark development of this process was the declaration of the UN IYDP, 1981, which was the result of successful campaigns of international, nongovernmental organizations concerning disabilities. Rehabilitation International was one of the notable examples of such international organizations (RI, 1980). Lord Alf Morris, the former minister of the disabled of the United Kingdom, headed an international team to draft the RI Charter for the 1980s, which was presented by the then-RI president, Professor Sir Harry Fang from 1980 to 1984, to most heads of state, including the then-prime minister of China. In 1981, DPI was founded in Singapore by some old guards of RI. The independent living movement was about to be founded in the States. The United Nations took up the leadership in promoting further the disability moveFigure 13.1 Comparative Positions of SHOPs in Asia Mainland China CDPF

Philippines KAMPI

Thailand

Taiwan

Japan

DPT

LWOD

JCILC

RAHK fc

^...

^"

Hong Kong

-

(i)

organization structure

w less complex

more affirmative

(ii)

government affirmative policy toward SHOP

less affirmative

more comprehensive

(iii) legislation protecting people with disability

less comprehensive

more recognition

(iv) transformational and charismatic leadership

less recognition

more complex

inside/outside SHOP

qualities

inside/outside SHOP

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ment by declaring the United Nations Decade of Disabled Persons, 1983-1992, supplemented by the World Program of Action Concerning Disabled Persons. At the close of the UN Decade, the UN adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabities and the installation of a special rapporteur to monitor its implementation, by collecting governmental and nongovernmental progress reports. DPI and the independent living movement bring different disability groups together and add much force to the already existing single-disability INGOs, such as the World Blind Union, the World Federation of the Deaf, and Inclusion International. In the Asian and Pacific region, the interaction of nongovernmental and governmental organizations is even more close and intense. The adoption of the Asian and Pacific Decade of Disabled Persons, 1993-2002 by UN ESCAP was the result of intensive lobbying of NGOs with their GO counterparts, with the result that the resolution proposed by China and Japan was adopted unanimously and signed by all governments of ESCAP. The UN resolutions concerning disabilities, although not binding to member governments, have provided a set of high moral values that affect governments' policy orientation toward SHOPs. Specifically, the following policy statement is in favor of SHOP development at the national level: governments should support PWD's participation in decision-making processes at the local, national, and international levels, as well as SHOPs at both local and national levels. Facilitating the realization of the UN policy objectives to support SHOPs at the national level, Japan has taken a major lead since 1981 in conducting leadership training for PWD from the Asian and Pacific region. Japan also supports ESCAP in conducting leadership training in developing countries. Japan supports international cooperation in the field of disability through various means, including dispatch of youth volunteers, and experts to provide rehabilitation and leadership training to PWD, build training facilities, and supply equipment. Two main government organizations are involved, JICA of the Ministry of Foreign Affairs and Japan International Cooperation of Welfare Service of the Ministry of Health and Wealth, in rehabilitation and leadership training for PWD. A number of NGOs are also involved in such regional cooperation activities (e.g., Japanese Society for the Rehabilitation of People with Disabilities). The Japan-ESCAP Cooperation Fund, established in 1986, supports ESCAP's project Assistance in Development and Strengthening of Self-Help Organizations of Disabled Persons. This six-year project has two objectives: to enhance mutual support among PWD and to empower PWD through peer support and group solidarity, creating a national mechanism by which disabled persons themselves are able to participate in the formulation of national policies and programs that affect disabled persons (ESCAP, 1999a: 157). With the financial support from Japan, ESCAP is undertaking a long-term program to enhance the management capacities of SHOPs in the region. To deal with SHOPs' management weaknesses, ESCAP offers an organizational model for them. First, it defines what SHOPs should be. Second, it defines what values (democratic and effective organization, gender sensitivity, critical appraisal of societal

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issues, analytic skills, advocacy skills, and communication skills) a SHOP leader should uphold. Third, it defines what management skills are important (staff management fund-raising, community relations, etc.). Fourth, it defines the importance of democratic decision making for SHOPS (ESCAP, 1997: 3-5). Most SHOP leaders in the region have taken part in ESCAP training courses, either as participants or as instructors or consultants. The ESCAP model for SHOPs is undoubtedly having a significant influence on SHOPs formed after UN IYDP. The actual impact of the globalization of disability issues through the United Nations has yet to be assessed. The various forms of government intervention and the legislation approach concerning SHOPs are making varying impacts on SHOPs' development in the region. Our observation shows that proactive government intervention and enactment of special legislation correspond to the strengthening of the cross-disability, federation type of SHOP across the country. International and national policy statements concerning support for singledisability and cross-disability have, however, not been clear. Single-disability self-help organizations have a longer tradition and are more likely organized at national and international levels. On the other hand, quite a number of active cross-disability, national SHOPs in the region were founded shortly after 1981, as result of the founding of DPI, the first cross-disability, international SHOP. Since then, cross-disability SHOPs have been found at various levels, particularly at the grassroots level, where various categories of disabled persons are dispersed thinly over a wide area. At national and international levels, cross-disability organizations are acting more prominently as advocates of PWD in general and in public promotion in awareness-raising programs. Usually, they are also formed as networks or federations of various single-disability groups (Takamine, 1998). The World NGO Summit 2000 is another such example (Deng, 2000). ESCAP recognizes the interaction between single- and cross-disability SHOPs and tries to identify their interactive roles at the national level. The Seoul Proposals for the Second Half of the Asian and Pacific Decade of Disabled Persons urge governments to "recognize the value of promoting self-help organizations of people with specific disabilities, and further promote a cross-disability federation of such self-help organizations.... Channel resources, to the extent possible, directly to self-help organizations of people with disabilities to enable them to carry out, on behalf of their national constituencies, programs aimed at independent living of disabled persons" (ESCAP, 1999b: 81). In the international SHOP forums, the feeling has grown stronger that with the passing of the UN Decade of Disabled Persons, 1983-1992, the attention of international governmental communities to disability has lessened, and the momentum has weakened. In response to such a pessimistic situation, a closer coalition has been emerged. For the first time in history among major international SHOPs, a common statement was issued after the World NGO Summit held in Beijing in March 2000 to urge an international convention for the rights of disabled persons, another landmark for the further development of the disability movement (Deng, 2000).

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Our observation shows that where government supports national, crossdisability SHOPs, such SHOPs witness a major organizational development. In the Asian and Pacific region, ESCAP provides a SHOP model for leaders in the disability movement, and this role model seems to fit the disability culture, which cherishes inclusion and respects differences, and values participation and equality of opportunities for all. ESCAP's intervention in the globalization process is considered a major factor in shaping the microcharacteristics of SHOPs in the region, which turn out to be rather harmonious. THEORETICAL FRAMEWORK FOR THE UNDERSTANDING OF SHOPS IN ASIA Previous discussions have identified key conceptual dimensions affecting the micro- and macro-characteristics of SHOPs as well as their interactions with the globalization process in disability issues. Based on these discussions, the theoretical framework as shown in Figure 13.2 for the understanding of SHOPs in the region is suggested, which may facilitate further research and theoretical debates concerning SHOPs in Asia. This theoretical framework identifies the interactions among key conceptual dimensions at the local, national, and international levels and conceptual indicators that would reveal changes in SHOPs as a result of such interactions. At the international level, the key conceptual dimension is globalization of disability issues, and the conceptual indicators are UN and ESCAP initiatives, development assistance from donor countries, and international NGOs' initiatives. At the national level, two conceptual dimensions are identified: government and legislation, and civil society. The conceptual indicators of government and legislation are affirmative policy concerning SHOPs and special legislation protecting disabled people. The conceptual indicators of civil society are initiatives from, and collaborations with, NGOs, including those concerning disability. At the national and local levels, the key conceptual dimension is the community of SHOPs and their leadership, which is also the primary interest of the present study. Two sets of conceptual indicators are identified for this dimension: their macro-characteristics, which include organization and management, leadership qualities, and inclusion and globalization perspectives; and their microcharacteristics, which include coverage of disability types, organizational complexity, and national and international networking. These conceptual dimensions interact with each other and shape each other. SHOPs are not considered passive recipients of the forces of the interaction but rather active actors in this theoretical framework. The theoretical framework is offered to support further research on SHOPs and their dynamics at the local, national, and international levels. The framework is also considered useful to inform policy analysis and development on issues affecting organizations of disabled people.

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Figure 13.2 Theoretical Framework on Conceptual Dimensions of SHOPs

CHALLENGES IN THE FUTURE: ENHANCING SOLIDARITY THROUGH CROSS-SECTORAL NETWORKING AND ALLIANCE Enhancing Solidarity: An Agenda for All Certain issues have emerged concerning the solidarity of SHOPs in the region over the last decade. First, they have difficulties in collaborating with each other due to communication barriers. Second, are incompatible priorities and diverse interests among SHOPs. Third, there is a lack of comprehensive organizational skills and adequate resources. Fourth, there is an absence of concerted efforts to develop new leaders. Fifth, some SHOPs feel the risk of being taken over (ESCAP, 1999b: 13-14). ESCAP further notes that SHOPs at the national level are not representing the majority of rapidly increasing, small SHOPs at the local level, partic-

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ularly in remote rural areas, as well as not being gender-sensitive enough. ESCAP sees that consultation among SHOPs is becoming more important and necessary when only a few leaders sit on high-level policy-making committees at the central government level (ESCAP, 1999c). Based on the proposed theoretical framework, solutions to these issues cannot be found in the community of SHOPs alone. The other key sectors (the governmental and legislation sector, the civil society sector, and the international community,) have an impact on the solidarity of SHOPs. Therefore, SHOP leaders should seek the input of other sectors in how to strengthen their capabilities and enhance their solidarity. Similarly, the agenda of enhancing solidarity among SHOPs, improving their capacities to reach out to the most disadvantaged membership, and networking with GOs and civil society actors should also be given due attention by these other important actors. SHOPs with their own agenda in enhancing solidarity should still benefit from the preceding approach. For example, in Japan the independent living movement is working on a nationwide network to secure financial assistance from government and to achieve societal recognition of its mission in promoting independent living. At the same time, it is seeking a nationwide, united, cross-disability movement. It is, however, falling short of seeking alliances with GOs and NGOs in furthering the disability movement. Multisectoral Networking and Alliance in Mainland China The situation of China and its approach in multisectoral networking and alliance would provide useful insights into the importance of this approach for the new millennium. In China, GOs with primary responsibilities concerning disability include the State Council Commission on Women and Children Affairs and the State Council Coordination Commission on Disability. There have also been major state plans on disability, including the Five-Year Development Outline on Disability, the Eighth Five-Year Program on Disability (1991-1995), and the Ninth FiveYear Program on Disability (1996-2000). CDPF, however, feels the necessity to involve mainstream GOs and NGOs (e.g., All-China Women's Federation, China Fund for Youth Development, China Foundation for Children and Adolescence) (Li, 1998:366-367). The necessity of involving mainstream GOs and NGOs concerning old people is even more significant. It is estimated that the population of disabled people 60 years and above will increase from 21.53 million in 1990 to 115.11 million in 2050, or an increase of 4.3 times. The proportion of disabled elderly in the whole population will be 1 in 13 (Gui, 1998: 290). Therefore, among other measures, close cooperation between CDPF and mainstream GOs and NGOs concerning senior citizens has become essential in planning and service delivery as well as policy advocacy. Another area is poverty alleviation. In China, 50 million people are living in poverty, and 13 million of them are people with disabilities. These PWD who are

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poor are often not primary targets for the state's poverty eradication program, simply because 70% of poor and disabled people do not live in the target counties of such programs. It is, therefore, urgent and necessary for CDPF to take on the important tasks of helping organizations of disabled persons at various levels and affiliated service organizations to cooperate with local mainstream povertyalleviation institutions to assist poor, disabled people (Guo, 1998: 334). SHOPs in all other territories and countries are facing similar challenges as in China, though to a lesser degree, to seek multisectoral networking to help the most disadvantaged groups of people with disabilities. SHOPs by their very nature have to deal with all these pressing challenges as their primary mission. SHOPs can function effectively only if all significant sectors in the mainstream society are involved. The target of getting the United Nations to adopt an international convention on the rights of people with disabilities is perhaps the litmus test of the disability movement and its future in the new millennium.

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Appendix Sample of Self-Administered Questionnaire

Dear Friends, We are lecturers of the City University of Hong Kong and have deep involvement and interests in the disability movement in Asia and the Pacific Region. We are now conducting a study on self-help organizations of people with disabilities and wish to invite you, as a leader of a self-help organization, to fill out the attached questionnaire. We undertake that all your information shall be strictly confidential, and no individuals or organizations shall be identified in the study's presentations. Your generous support and cooperation will enable us to better understand self-help movements in the disability field. Based on the findings of this study, recommendations on measures concerning self-help organizations of people with disabilities will be submitted to concerned organizations in the Region. This questionnaire is given to you through our research partners in your country, who will contact you to collect the completed questionnaire. If you have any inquiries, please feel free to contact our partner, or us. Thank you for your interest and support. Yours sincerely, Joseph Kwok, Ph.D. Associate Professor Tel: 852 2788 8954 FAX: 852 2788 8960 Email: [email protected] Department of Applied Social Studies City University of Hong Kong Tat Chee Avenue, Kowloon Hong Kong March 1999

Raymond Chan, Ph.D. Assistant Professor Tel: 852 2788 9737 FAX: 852 2788 8960 Email: [email protected]

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Sample of Self-Administered Questionnaire QUESTIONNAIRE

Thank you for participating in this 45-minute self-administered questionnaire. There are SIX sections of questions. For each question, please choose ONE answer which best describes your situation unless specified otherwise. SECTION ONE: GENERAL MEMBERSHIP 1.

In your organization, which gender has the larger number of membership (i.e., over 50%)? • male D female D the same

2.

What is the age distribution of the general membership? D mostly young people (age under 21) • mostly adults (age 22 to 55) D mostly seniors (age over 55)

3.

What are the characteristics of the general membership? D mostly physically handicapped D mostly mentally handicapped (mental illness) D mostly intellectually handicapped (mental retardation) • mostly chronically ill persons D mostly carers of persons with disability (specify nature of disability) • others (specify)

4.

What is the financial situation of the members in comparison to the mainstream society? D generally better D about the same • generally worse

5.

Who, among the membership, is the most disadvantaged group? (please check ONE) D children D women • elderly people D others (specify)

6.

Please give a brief description of the disadvantaged members' current situation (e.g., socioeconomic status, family situations, rehabilitation support).

7

Is SHOP effective in changing the general public's way of treating SHOP members? D yes, in what way?

Sample of Self-Administered Questionnaire

8.

•

no, why?

0

others (please specify)

153

Does participation in SHOP enable members to have a clearer understanding of self-help philosophy? D yes, in what way?

D no, why?

D others (please specify)

9.

Name three or more factors that contribute to active mutual help and self-help among members (e.g., sharing of resources, emotional support, peer guidance, and counseling).

10.

Name three or more factors that contribute to the empowerment of members to assume social valued roles (e.g., becoming leaders in committees, becoming spokesmen for members).

END OF SECTION ONE SECTION TWO: ORGANIZATION AND LEADERSHIP 1.

How do members establish goals for the SHOP? (Can choose more than one) D consult professional • conduct studies • polling members' opinion and preferences D organize seminars D general meetings D voting D others (specify)

Sample of Self-Administered Questionnaire

154 2.

How do members agree on principles for policies and strategies? (Can choose more than one) D committees' voting D all members' voting D chairperson's decision D others (specify)

3

How do members communicate with each other? (Can choose more than one) D mailing D telephone D gatherings D e-mail D publications D meetings D others (specify)

4.

How often do members communicate with each other? (Can choose more than one and circle the most appropriate frequency of communication) very frequent) frequent D mailing (infrequent very frequent) frequent telephone (infrequent • very frequent) frequent gatherings (infrequent • very frequent) frequent (infrequent D e-mail very frequent) frequent (infrequent D publications very frequent) frequent meetings (infrequent • D others (specify)

5.

How does your SHOP raise funds? (Can choose more than one) D members' contribution D fund-raising campaign • solicit government funding D overseas donations D others (specify)

6.

How do you describe the decision-making style of your SHOP? D directive D consultative D democratic D others (specify)

7

How do you find the process of decision making of your SHOP? 7a. Efficiency (e.g., makes decision fast without prolonged debates): (Circle a rating)

1

2

extremely inefficient

3

5

4

moderately efficient

extremely efficient

7b. Effectiveness (decisions are useful in problem solving): (Circle a rating)

1 extremely inefficient

2

3 moderately efficient

5

4 extremely efficient

Sample of Self-Administered Questionnaire

155

8

What is the average frequency (per year) and duration (number of hours) of meetings for the central committee? • daily/weekly ( hrs) hrs) 0 biweekly/monthly ( hrs) D bimonthly/quarterly ( hrs) • half-yearly/annually ( ( hrs) D others (specify)

9

What is the average frequency (per;year) and duration (number of hours) of meetings for the branches, if any? D Yes, we have branches D No, we do not have branches (Go to Question 10) D daily/weekly ( hrs) hrs) D biweekly/monthly ( hrs) • bimonthly/quarterly ( D half-yearly/annually ( hrs) ( hrs) D others (specify)

10.

Who prepares the meetings (e.g., prepares the agenda, discussion papers)? (Can choose more than one) • chairperson D secretary D executive members • members D paid staff D others (specify)

11.

Who formulates the agenda (Can choose more than one) D chairperson • secretary D executive members D members D paid staff D others (specify)

12.

How are decisions being made in branches/committee meetings? (Can choose more than one) D

voting

D chairperson's decision D by consensus • others (specify) 13.

What are the systems of internal accountability to members? (Can choose more than one) D regular reporting meetings D printed reports D newsletters D regular polling D consultative meeting • members' individual feedback D others (specify)

156 14.

Sample of Self-Administered Questionnaire Are these systems effective? (Circle the desired rating)

1

moderately efficient

extremely efficient

15.

What are the systems of external accountability to funders/donors? • regular reporting meetings • printed reports D newsletters D regular polling D consultative meeting D members' individual feedback D external audit D others (specify)

16.

Are these systems effective? (Circle the desired rating)

1 extremely inefficient

4

3

2

5

4

3

2

extremely inefficient

moderately efficient

5 extremely efficient

17.

How often do leaders communicate with each other? (Can choose more than one) D daily/weekly ( hrs) D biweekly/monthly ( hrs) D bimonthly/quarterly ( hrs) D half-yearly/annually ( hrs) D whenever necessary • others (specify)

18.

How often do leaders share with more than one) D daily/weekly D biweekly/monthly D bimonthly/quarterly D half-yearly/annually • whenever necessary • others (specify)

each other on SHOP formal matters? (Can choose ( ( ( (

hrs) hrs) hrs) hrs)

19.

How often do leaders communicate with members in general? (Can choose more than one) D daily/weekly ( hrs) D biweekly/monthly ( hrs) D bimonthly/quarterly ( hrs) • half-yearly/annually ( hrs) D whenever necessary • others (specify)

20.

How does the leadership deal with internal complaints against the organization as a whole? (Can choose more than one) • handle them personally D transfer to paid staff, if any

Sample of Self-Administered Questionnaire • D D • D

157

transfer to assigned personnel set up ad hoc investigating/mediating team bring to committee meeting consult professionals others (specify)

21.

How does the leadership deal with internal complaints against a specific member? (Can choose more than one) • handle them personally • transfer to paid staff, if any D transfer to assigned personnel D set up ad hoc investigating/mediating team • bring to committee meeting D consult professionals D others (specify)

22.

How does the leadership deal with external complaints against the organization as a whole? (Can choose more than one) • handle them personally • transfer to paid staff, if any D transfer to assigned personnel D set up ad hoc investigating/mediating team • bring to committee meeting • consult professionals D others (specify)

23.

How does the leadership deal with external complaints against a specific member? (Can choose more than one) D handle them personally D transfer to paid staff, if any D transfer to assigned personnel • set up ad hoc investigating/mediating team D bring to committee meeting D consult professionals • others (specify)

24.

What are the means of leadership development in your SHOP? (Can choose more than one) D mentoring D individual coaching D in-house training • professional training within the country D overseas training • others (specify)

Sample of Self-Administered Questionnaire

158 25.

What are learning opportunities for members? (e.g., leadership training, personal growth, interpersonal relationship, ability to understand government's policies, ability to access resources, ability to mobilize resources, etc.) (Please circle a number for your rating) \\ extremely limited opportunities

[2

[3 average chance

[4

|5 plenty of opportunities

26.

Are there opportunities for your members in assuming advisory roles in government organizations (e.g., taking on consultancy jobs)? D Yes D No (Go to Question 29)

27.

If yes, what about the extent of these opportunities?

[l

[2

extremely limited opportunities

[3

J4

average chance

(5 plenty of opportunities

28.

If yes, what are these roles? Please give examples:

29.

Are there opportunities for your members in assuming advisory roles in nongovernmental organizations (e.g., taking on consultancy jobs)? D Yes D No (Go to Question 32)

30.

If yes, what about the extent of these opportunities? [l extremely limited opportunities

[2

[3 average chance

|5

\4 plenty of opportunities

31.

If yes, what are these roles? Please give examples:

32.

What kinds of support does your SHOP give to the leaders? (Can choose more than one) D financial support D material support (transportation) D secretariat support • communication facilities support D personal care support D others (specify)

33.

Is there any paid organizer (with or without disability) in your SHOP currently? D Yes D No (Go to Question 39)

Sample of Self-Administered Questionnaire

159

34.

How many are there currently?

35.

What are the organizer's job duties? (Can choose more than one) • secretarial work D liaison work • organizer of SHOP activities D fund-raising D public relations • others (specify)

36.

To what extent does the paid organizer(s) help the leadership performance of your SHOP? (Circle the desired rating)

Li

[?

absolutely not helpful 37.

[3

[4

moderately helpful

15 extremely helpful

To what extent does the paid organizer(s) help the organizational development of your SHOP? (Circle the desired rating)

1

2

absolutely not helpful 38.

number of organizer(s)

3

5

4

moderately helpful

extremely helpful

To what extent does the paid organizer(s) help to generate resources in your SHOP? (Circle the desired rating)

b

absolutely not helpful

[2

Jj

moderately helpful

[4

extremely helpful

Is

39.

Do you have any paid elected member (with or without disability) to serve your SHOP currently? D Yes D No (Go to Question 42)

40.

How many are there currently

41.

What is the paid elected member's job duties? (Can choose more than one) D secretarial work • liaison work D organizer of SHOP activities n fund-raising • public relations D others (specify)

42.

How do leaders perform in formal committee structure? (Choose one) • directive • consultative • delegatory

number of organizer(s)

160 43.

Sample of Self-Administered Questionnaire How are leaders regarded by local organizations? (Circle the desired rating) [l absolutely no regard

44.

\l

|5

[4 high regard

How are leaders regarded by national organizations? (Circle the desired rating)

[1

[2

absolutely no regard 45.

\3 moderate regard

b

[4

moderate regard

Is high regard

How are leaders regarded by international organizations? (Circle the desired rating) [l absolutely no regard

[2

[3 moderate regard

|5

[4 high regard

46.

How does your SHOP deal with deviant member(s) (extremely critical, aggressive, not complying with your SHOP'S constitution)? (Can choose more than one) D ignore D appreciate D accept D tolerate • counsel • discipline D others (specify)

47.

How tolerant is your SHOP to such deviant member(s)? (Circle the desired rating) [l absolutely intolerant

[2

[3 moderately tolerant

|5

\4 highly tolerant

48.

Has your SHOP ever received any complaint about its inequitable treatment of nonmembers? D Yes D No (Go to Next Section)

49.

If yes, what is the complaint? Please list a maximum of five complaints.

50.

What is the frequency of complaints against your SHOP? daily/weekly • biweekly/monthly D bimonthly/quarterly • half-yearly/annually D whenever happened D others (specify)

Sample of Self-Administered Questionnaire

161

51.

How does your SHOP deal with such complaints? (Can choose more than one) D chairperson handle them personally D transfer to paid staff, if any D transfer to assigned personnel D set up ad hoc investigating/mediating team • bring to committee meeting D consult professionals D others (specify)

52.

What kind of activities is your SHOP most equipped to deliver to your members? (Can choose more than one) D leadership training D community-based rehabilitation • income-generating skills training • offering small grants D poverty relief • develop business ventures D provide traditional rehabilitation services D others (specify) END OF SECTION TWO

SECTION THREE: RELATIONSHIP WITH PARTNER ORGANIZATIONS 1.

Does your SHOP have a special partner(s) organization which offers you significant support in financial resources, professional resources, administration and legal support? la. D Yes n No (Go to Question 4) lb. If yes, please describe these partners: government organization(s) (GO): (please answer Question 2) nongovernmental organization(s) (NGO): (please answer Question 3)

2.

How do you describe your relationship with such GO partner(s) ? • very close D average • distant • others (specify)

3.

How do you describe your relationship with such NGO partner(s)? • very close D average D distant D others (specify)

162 Sample of Self-Administered Questionnaire 4 How would you describe the traditional rehabilitation and welfare organizations? (Circle the desired rating) [l absolutely not helpful

\l

[3 moderately helpful

|5

\4 highly helpful

5

Have you advocated disabled people's participation in traditional rehabilitation and welfare organizations' decision-making bodies? D Yes D No (Go to Question 7)

6

If yes, what are their responses? D welcome suggestions and with action D welcome suggestions but without action • ignore suggestions D reject suggestions D others (specify)

7

Have you advocated for reallocation of government and society resources in favor of SHOP to deliver services to its members? D Yes D No (Go to Question 10)

8

If yes, what are the responses from government organizations? • welcome suggestions and with action D welcome suggestions but without action D ignore suggestions D reject suggestions D others (specify)

9

If yes, what are the responses from nongovernmental organizations? • welcome suggestions and with action • welcome suggestions but without action D ignore suggestions • reject suggestions • others (specify)

10

What do you think is the image of SHOP in the eyes of NGOs? (Can choose more than one) D strong adovcate • good working partner D additional resources D competition for resources • difficult to work with • troublemaker • welfare recipient • unrealistic leftists D others (specify)

11

What do you think is the image of SHOP in the eyes of GOs? (Can choose more than one) D strong adovcate D good working partner

Sample of Self-Administered Questionnaire 163 D • • D D D D

additional resources competition for resources difficult to work with troublemaker welfare recipient unrealistic leftists others (specify)

12.

What do you think is the image of SHOP in the eyes of the general public? (Can choose more than one) D strong advocate D good working partner D additional resources D competition for resources D difficult to work with D troublemaker D welfare recipient D unrealistic leftists D others (specify)

13.

What do you think is the image of SHOP in the eyes of the other disadvantaged groups? (Can choose more than one) D strong advocate D good alliance D additional resources D competition for resources D difficult to work with D trouble maker D welfare recipient D unrealistic leftists D others (specify)

14.

What strategies and skills are used in effective collaboration with government organizations? (Can choose more than one) D interviewing D assertiveness D negotiation D legal research D litigation C presentation D lobbying D emotional appeal D sit-in D demonstration • others (specify)

15.

How effective are they? [l absolutely effective

\l

[3 moderately effective

[4

(5 highly ineffective

164 Sample of Self-Administered Questionnaire 16 What strategies are used in effective collaboration with nongovernmental organizations? (Can choose more than one) D interviewing D negotiation • legal research • presentation D lobbying D emotional appeal D others (specify) 17 How effective are they? 1

2

absolutely effective

3

4

moderately effective

5

highly ineffective

18. What are the strategies and skills making SHOP representatives effective in GO advisory committees dealing with policy or resources allocation issues? (Can choose more than one) D interviewing D assertiveness D negotiation D legal research • litigation • presentation • lobbying • emotional appeal D sit-in D demonstration D others (specify) 19.

How effective are they?

1.

absolutely effective

|2

Is

moderately effective

U

Is

highly ineffective

20. What are the strategies used in seeking alliances and coalition in advocacy action on focused disability issues? D interviewing • assertiveness D negotiation • legal research D litigation D presentation • lobbying D emotional appeal D sit-in • demonstration D others (specify)

Sample of Self-Administered Questionnaire 21.

165

How effective are they? (Circle the desired rating)

[\

L?

absolutely effective

[3

Li

moderately effective

5 highly ineffective

22.

What are the strategies used in seeking alliances and coalitions in advocacy action on general welfare issues (rights and welfare of women, elderly)? (Can choose more than one) D interviewing D assertiveness • negotiation D legal research H litigation • presentation D lobbying D emotional appeal D sit-in D demonstration • others (specify)

23.

How effective are they? (Circle the desired rating)

[\

[2

absolutely effective

[3

[4

moderately effective

15 highly ineffective

24.

What are the strategies used in seeking alliances and coalitions in advocacy action on general public-concerned disability issues(e.g., environmental protection, land mine issues, local and central government election)? (Can choose more than one) D interviewing D assertiveness D negotiation D legal research D litigation • presentation D lobbying D emotional appeal D sit-in D demonstration • others (specify)

25.

How effective are they? (Circle the desired rating)

[l absolutely effective

[2

[3 moderately effective

END OF SECTION THREE

[4

15 highly ineffective

166

Sample of Self-Administered Questionnaire

SECTION FOUR: RELATIONSHIP WITH SOCIETY AT LARGE 1.

Which strategy(ies) are more effective for SHOP to seek social changes in the context of the cultural systems (e.g. discriminatory, accepting) of your country? D collaborative D complementary • confrontational D consciousness-raising D others (specify)

2.

Which strategy(ies) are more effective for SHOP to seek social changes in the context of the political systems (e.g. multiparty, popular election) of your country? • collaborative D complementary D confrontational • consciousness-raising D others (specify)

3.

Which strategy(ies) are more effective for SHOP to seek social changes in the context of the legal systems (e.g. human rights legislation) of your country? D collaborative • complementary D confrontational D consciousness-raising • others (specify)

4.

Do you have any experience in doing social development in your country, e.g., organizations for poverty relief, for community development concerning economic, health and housing issues, etc? If yes, please list a maximum of five examples.

END OF SECTION FOUR SECTION FIVE: GLOBALIZATION APPROACH TO DISABILITY AS A HUMAN RIGHTS ISSUE AND THE SHOP AS DISABILITY RIGHTS ADVOCATE 1.

Do you know about the United Nations (UN) initiatives and the globalization process in disability as a human rights issue? D Yes • No

2.

Have you ever participated in such NGO (e.g., DPI, WHO, RI) activities on the world/international level? D Yes D No (Go to Question 5)

Sample of Self-Administered Questionnaire 167 3.

If yes, how often do you participate? D quarterly • half-yearly • annually • biannually D others (specify)

4.

If yes, what is your role? • country representative D speaker D discussant • committee member D participant D observer D others (specify)

5.

Have you ever participated in such NGO (DPI, WHO, RI) activities on the Asian and Pacific region level? • Yes D No (Go to Question 8)

6.

If yes, how often do you participate? D quarterly D half-yearly • annually • biannually • others (specify)

7.

If yes, what is your role? (Can choose more than one) D country representative D speaker D discussant D committee member • participant D observer • others (specify)

8.

How do you view SHOPs' influence as adviser and advocate on UN initiatives concerning disability? (Circle the desired no.)

(j

[2

absolutely no influence 9.

[3

[4

moderately influential

15 extremely influential

How do you view SHOPs' influence as adviser and advocate on regional initiatives concerning disability? (Circle the desired no.) [l absolutely no influence

[2

[3 moderately influential

END OF SECTION FIVE

[4

15 extremely influential

168

Sample of Self-Administered Questionnaire

SECTION SIX: RESPONDENT'S PERSONAL INFORMATION 1.

What is your age? (at your last birthday)

2.

What is your sex? D Male

•

Female

3.

What is your disability, if any?

4.

How many years have you served as leader of SHOP, including broken and continuous periods of service? year(s)

5.

What is the nature of your SHOP? D family carers of disabled people • disabled people D others:

6

What is your highest education level achieved? D primary D secondary D postsecondary D tertiary/university

7

What is your professional qualification, if any?

8

What is your occupation?

9

Have you ever served in government advisory committees? D Yes D No (Go to Question 12)

10

If yes, list the most important position held

11.

If yes, the duration:

12

Have you ever served in the decision-making boards of international bodies, GO or NGO, other than SHOP? D Yes • No (Go to Question 15)

13.

If yes, list the most important position held:

14.

If yes, the duration:

15.

Have you ever served in UN committees? D Yes • No (Go to Question 18)

16.

If yes, list the most important position held:

year(s)

year(s)

17.

If yes, the duration:

18.

Have you ever undertaken any consultancy project in your country? • Yes D No (Go to Question 21)

year(s)

19.

If yes, any paid? D Yes

D No

Sample of Self-Administered Questionnaire

169

20.

If yes, please give details of the most significant project (e.g., name and nature):

21.

Have you ever undertaken any consultancy project at an international level? • Yes D No (Go to Question 24)

22.

If yes, any paid? • Yes

D No

23.

If yes, please give details of the most significant project (e.g., name and nature):

24.

In order to make yourself a better leader, what additional formal qualifications would you need most?

25.

In order to make yourself more effective as a leader, what kind of skills would you need most?

26.

In order to make yourself a better leader of SHOP, what kind of personal qualities would you need most? (Can choose more than one) • technical/professional knowledge D organizational know-how D ability to grasp a situation • decision-making ability D creativity D mental flexibility D proactivity D moral courage • resilience D social skills D self-knowledge D ability to learn from experience • others (specify) END OF QUESTIONNAIRE

THANK YOU VERY MUCH FOR COMPLETING THE QUESTIONNAIRE

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Bibliography

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Index

Accountability: Hong Kong SHOP survey, 87; Japan SHOP survey, 94; Mainland China SHOP survey, 76-77; organization/leadership analysis, 134; Philippines SHOP survey, 105-106; Taiwan SHOP survey, 111; Thai SHOP survey, 119; Vietnam SHOP survey, 126-127 "Acting at a distance," 9 Action Committee for the Laws for the Protection of Disabled Persons, Taiwan, 31 Advocacy: CDPF, 36; Hong Kong SHOP survey, 89; KAMPI, 30; LWOD, 30; Mainland China SHOP survey, 78; SHOPs, 15; social inclusion analysis, 135; Vietnam SHOP survey, 128-129 Age: Hong Kong SHOP survey, 84; Japan SHOP survey, 93, 94; Mainland China SHOP survey, 73; Philippines SHOP survey, 101, 102; Taiwan SHOP survey, 109, 110; Thai SHOP survey, 117-118; Vietnam SHOP survey, 123, 124 Agenda for Action for Asian and Pacific Decade of Disabled Persons, 1, 63 Alcoholics Anonymous, foundation of, 7

Alexander Gralnick Memorial Award, CDPF, 37 Aquino, Corazon, 103 Asia: financial crisis, 61-62; SHOP strategies questions, 17-18 Asia-Pacific Economic Cooperation (APEC),61,65 Asian and Pacific Decade of Disabled Persons: celebration of, 26, 35, 142; disappointment with, 64-65; proclamation of, 1, 19, 63, 144; and SHOPs, 13; support for, 68 Asian culture, 47, 59 Asian Development Bank, vocational training, 52 Asian Disabled People Assistance Group, Japan, 100 Assertiveness: Hong Kong SHOP survey, 90; Mainland China SHOP survey, 79-80; Philippines SHOP survey, 107; Thai SHOP survey, 121 Association of Deaf, DPT, 33, 34 Association of Physically Handicapped, DPT, 33, 34 Association of Southeast Asian Nations (ASEAN), 62 Association of the Blind, DPT, 33, 34, 52 Australia, 49, 72

182 Beijing Blind Massage Hospital, 22 Beijing Declaration on the Rights of People with Disabilities in the New Century, 69 Beijing Disabled People's Federation, 58 "Biopsychological" model, ICIDH, 13 Borjal, A., 40 Breaking Barriers Philippines Project, 108 Brennan, Ray, 120 Bright Future for People with Disabilities (BF): achievements, 35; international relations, 35; membership, 34; organization/leadership, 36, 142; Vietnam's SHOP, 4 Canada, 72 Caregiving, feminization of, 84 Charismatic leadership. See Transformational leaders Children: education for disabled, 51; Philippines SHOP survey, 102; self-help organizations, 7-8 China Association of the Blind, CDPF member, 22 China Association of the Deaf, CDPF member, 22 China Association of the Physically Disabled, CDPF member, 22 China Disabled Persons' Federation (CDPF): awards received, 37; employment quota/levy system, 58, 66; establishment of, 21, 22, 75; International Day of Disabled Persons, 50; and international organizations, 24; leadership, 36-37, 137; Mainland China's SHOP, 3; membership of, 22; organization, 22-24, 75, 137; political strategy of, 55; and the state, 24, 75, 137, 148; theoretical continuum, 143 China Fraternity for the Mentally Retarded and Disordered, 22 China Rehabilitation Association of the Disabled, 22 China Rehabilitation Research Centre, 22 China Rehabilitation Research Centre for Deaf Children, 22

Index China Society of Blind Massage, 22 China Society of Prosthetics and Orthotics, 81 China Training Centre for Orthopedic Technologies, 80-81 "Circles of advocates," 139 Civic education, role of, 48, 50, 53-54 Civil society: concept of, 46; four NGO requirements, 45; political participation, 55-56; requirements for building, 46; and SHOPs, 17, 18-19, 45, 47,59 Coalition politics, SHOPs strategy, 18, 55 Coalitions: Philippines SHOP survey, 107; Thai SHOP survey, 121; Vietnam SHOP survey, 128-129 Collaboration: barriers to SHOP, 147-148; Hong Kong SHOP survey, 90; Japan SHOP survey, 96-97; Mainland China SHOP survey, 80; Philippines SHOP survey, 107; SHOPs strategy, 18, 55; Taiwan SHOP survey, 114; Thai SHOP survey, 121; Vietnam SHOP survey, 129-130 Committee for the Protection of Disabled Persons, Taiwan, 31-32 Communication: Hong Kong SHOP survey, 86; Japan SHOP survey, 94, 96; Mainland China SHOP survey, 76; Philippines SHOP survey, 106; Taiwan SHOP survey, 111; Thai SHOP survey, 119; theoretical examination of, 132; Vietnam SHOP survey, 127-128 Community Chest of Hong Kong, 25 Community-based rehabilitation (CBR): Hong Kong, 88; Philippines SHOP survey, 104-105, 108; SHOPs role, 2; social inclusion analysis, 134-135 Complaint management: Hong Kong SHOP survey, 87; Japan SHOP survey, 95; Mainland China SHOP survey, 77; organization/leadership analysis, 133; Philippines SHOP survey, 106; Taiwan SHOP survey, 112; Thai SHOP survey, 120; Vietnam SHOP survey, 127

Index Complementary strategy, 18, 129-130 Compulsory Education Law, Mainland China, 79 Confrontational strategy, SHOPs, 18, 55, 98 Consciousness-raising strategy: Hong Kong SHOP survey, 90; Mainland China SHOP survey, 80; Philippines SHOP survey, 104; SHOPs, 18, 135; Taiwan SHOP survey, 114-115; Vietnam SHOP survey, 129-130 Consultative style: Hong Kong SHOP survey, 86; Mainland China SHOP survey, 75-76; Taiwan SHOP survey, 110; Thai SHOP survey, 119 Coordinating Committee on Measures Concerning Disabilities, Mainland China, 75 Council for the Promotion of New Decade of Disabled Persons, umbrella organization, 26 Council of the Disabled People of Thailand, PWD financial status, 118 Cross-disability, SHOPs, 54, 63-64, 143, 145 Cultural Revolution, and disability movement, 21 Culture, definition of, 11 Danish National Society of Polio and Accident Victims, Breaking Barriers Project, 108 Decade of Disabled Persons, UN, 1,3, 19,20,63,144,145 Decision-making styles: Hong Kong SHOP survey, 86-87; Japan SHOP survey, 94; Mainland China SHOP survey, 75-76; Philippines SHOP survey, 105; Taiwan SHOP survey, 110-111; theoretical examination of, 132; Vietnam SHOP survey, 125-126 Democratic style: Hong Kong SHOP survey, 86-87; Mainland China SHOP survey, 75-76; Philippines SHOP survey, 105; Taiwan SHOP survey, 110-111; Thai SHOP survey, 119; Vietnam SHOP survey, 125-126 Deng Pufang, 21,22, 74

183 Deng Xiaoping, 21 Deviant members: Hong Kong SHOP survey, 87; Japan SHOP survey, 94; Mainland China SHOP survey, 77; organization/leadership analysis, 133; Philippines SHOP survey, 106; Taiwan SHOP survey, 113; Thai SHOP survey, 121; Vietnam SHOP survey, 127 Direct services: KAMPI, 30; labeling process, 17; Mainland China SHOP survey, 78; organization/leadership analysis, 133-134; and SHOPs, 15, 16; Taiwan SHOP survey, 113; Thai SHOP survey, 121 Disability: biopsychological model, 13; concept of, 9; cultural model of, 11-12; diversity among, 58-59; human rights issue, 5-6, 19; medical model, 10, 13; political model, 11; social model, 11, 13 Disability Discrimination Ordinance, Hong Kong, 67 Disability distribution: Japan SHOP survey, 93; Mainland China SHOP survey, 73-74; Philippines SHOP survey, 101, 103; Thai SHOP survey, 118; Vietnam SHOP survey, 123, 124 Disability movement: internationalization of, 62-64; social inclusion, 54-55; in Taiwan, 31 Disability rights advocate, 5-6 Disabled People Thailand (DPT): establishment of, 32-33,42; funding of, 33-34; and international associations, 34, 42-43; leadership of, 42-43; membership, 32, 42; organization of, 32, 33, 34, 42, 139-140; and the state, 34, 140; Thai SHOP survey, 117-122; Thailand's SHOP, 3-4; theoretical continuum, 143 Disabled People's International (DPI): cross-disability SHOPs, 54; and DPT, 32, 117; establishment of, 1, 54; and KAMPI, 30,40; leadership of, 140; leadership training, 67; World NGO Summit, 69 Disabled Persons' Fundamental Law, Japan, 26

184 Discrimination Disability Ordinance, Hong Kong, 49 Discrimination, measures against, 48-50 Diversity politics, SHOPs strategy, 18 Economic and Social Commission for Asia and the Pacific (ESCAP): action agenda, 1, 63, 144; and DPI, 67; organizational model, 144; and RICAP, 64; role model, 146; on Thai women, 118 Eden Social Welfare Foundation (ESWF), Taiwan, 41 Education: Hong Kong SHOP survey, 83; Japan SHOP survey, 93; Mainland China SHOP survey, 72; Philippines SHOP survey, 101; Taiwan SHOP survey, 109; Thai SHOP survey, 117; Vietnam SHOP survey, 123, 124 Education quotas, inclusion policies, 57 Elderly, 102, 148 Employment quotas, inclusion policies, 57-58, 66-67 Employment status: Australian women, 72; Canadian women, 72; Hong Kong SHOP survey, 83; Japan SHOP survey, 93; Mainland China SHOP survey, 72; Philippines SHOP survey, 101; Taiwan SHOP survey, 109-110; Thai SHOP survey, 117; Vietnam SHOP survey, 123, 124 Empowerment, 9-10 Enforcement agencies: antidiscrimination, 48, 49-50; Mainland China, 79 Environment, health promotion, 2 Equal Opportunities Commission, Hong Kong, 38,49, 50, 52, 53 Euthanasia, JCILC, 39 Fang, Sir Harry S. Y., 21-22, 143 Far East and South Pacific Games for the Disabled (FESPIC Games), 51 Finance, globalization of, 61-62 Financial status: Hong Kong SHOP survey, 84-85; Mainland China SHOP survey, 74; Taiwan SHOP survey, 110; Thai SHOP survey, 118; Vietnam SHOP survey, 125

Index First National Assembly Day, Thailand, 33 Funding: DPT, 33-34; Hong Kong SHOPs, 38, 86; KAMPI, 40; Mainland China SHOP survey, 76; organization/leadership analysis, 134; Taiwan SHOP survey, 111; Thai SHOP survey, 120; Vietnam SHOP survey, 125 Gallaudet University, Thai partnership, 120 Gays, self-help organizations, 8 Gender: Hong Kong SHOP survey, 83, 84; Japan SHOP survey, 93, 94; Mainland China SHOP survey, 72-73; Philippines SHOP survey, 101, 102-103; Taiwan SHOP survey, 109, 110; Thai SHOP survey, 117, 118; Vietnam SHOP survey, 123, 124 Genetic engineering, JCILC, 39 Globalization: and disability issues, 143-146; employment quotas, 67; growth of, 61-62; Hong Kong SHOP survey, 90-91; Japan SHOP survey, 99; Mainland China SHOP survey, 80-81; Philippines SHOP survey, 107; of SHOPs, 20; social inclusion analysis, 136; social movements, 61; study questionnaire, 5-6; Taiwan SHOP survey, 115; Thai SHOP survey, 121; theoretical examination of, 131; Vietnam SHOP survey, 130 Goodwill Industries of Thailand, 33, 140 Great Britain, social capital, 47 Green Paper on Rehabilitation, Hong Kong, 66 Health promotion, SHOPs role, 2 Henry Kessler Award, CDPF, 37 Hong Kong: accessible transportation, 57; antidiscrimination laws, 67; Equal Opportunities Commission, 38, 49, 50, 52, 53; IDDP, 53; intellectually challenged SHOPs, 16; National Day of Disabled Persons, 50; public education programs, 52-53; rejection of employment quotas, 66-67; role mod-

Index els, 53, 54; SHOP leadership, 37-38, 139; SHOP organization, 25, 37, 138-139; SHOP research, 3; SHOP strategies, 55, 90; SHOP survey, 83-91; social inclusion analysis, 135, 136 Hong Kong Association of the Blind, 25 Hospital Authority, Hong Kong, 38 Hospital for Neurologically Disable Children (HNDC), 81 Huaxia Publishing House, CDPF member, 22 Human rights: disability issue, 5-6, 19; UN sanctions, 62 Human Rights Commissions, 49 Identity politics, SHOPs strategy, 18, 54 Ilagen, Venus M., 103 Inclusion International, 69, 144 Inclusion, promotion of, 48, 54-55, 56-59 Independent living (IL): and JCILC, 26-27, 39; and rehabilitation services, 98,99 Independent Living Centre, 3, 27 Independent living movement: founding of, 143; in Japan, 141-142, 148; SHOPs, 2, 3, 26 Information technology, and SHOPs, 64 Intellectual disabilities: Hong Kong SHOP survey, 83; SHOPs, 16, 31 International Classification of Impairments, Disabilities, and Handicaps (ICIDH), 13-14 International Convention for the Rights of Disabled Persons, 65, 68, 69 International Day of Disabled Persons (IDDP), 50, 53 International relations: disability movement, 62-63; DPT, 34, 42-43; Hong Kong SHOPs, 38, 88, 90; Japan, 9698, 100; JCILC, 39; KAMPI, 30, 41, 106-107, 108; Mainland China, 24, 78-81; SHOPs, 17; social inclusion analysis, 134-135; study questionnaire, 5; Taiwan, 41, 113-114; Thai SHOP survey, 120, 121-122; Vietnam

185 SHOP survey, 128-130; Vietnam's SHOPs, 43-44 International Year of Disabled Persons (IYDP): cross-disability groups, 54; establishment of, 1, 19, 62-63, 143; and Japan, 26; and KAMPI, 30, 40, 41; and Mainland China, 21; purpose of, 20, 135; Thailand, 32, 42 Internationalization, 62, 67 Interviewing strategy: Hong Kong SHOP survey, 90; Japan SHOP survey, 96-97; Mainland China SHOP survey, 79-80; Taiwan SHOP survey, 114 Japan: Asian and Pacific Decade of Disabled Persons (RNN), 64; and disability movement, 144-145, 148; early SHOPs, 26-27; employment quota/levy system, 58; and ILC, 141-142; intellectually challenged SHOPs, 16; and JCILC, 141; SHOP organization, 28; SHOP organization/leadership analysis, 132, 133-134; SHOP research, 3; SHOP strategies, 55, 96-97, 98-99; SHOP survey, 93-100; social inclusion analysis, 136 Japan Association of/for People with Mental Retardation, 26 Japan College of Social work, disabled population, 26 Japan Council for International Year of Disabled Persons, foundation, 26 Japan Council of Social Welfare, 26 Japan Council on Disability (JCD), umbrella organization, 26 Japan Council on Independent Living Centers (JCILC), 26-27, 39; and state 141; success of, 142; theoretical continuum, 143 Japan Federation of Organizations of Physically Disabled Persons, 26 Japan Federation of the Blind, 26, 100 Japan Federation of the Deaf, 26 Japan International Cooperation Agency (JICA), leadership training funding, 67, 144

186 Japan League for the Mentally Retarded, 26 Joint Council for the Physically and Mentally Disabled, Hong Kong, 25, 53 Katipunan ng Maykapansanan sa Philipinas, Inc. (KAMPI): Breaking Barriers Philippines Project, 108; establishment of, 28; gender equality, 103; international alliances, 30,40, 41; leadership of, 40-41; major projects, 29; membership, 29,40; organization/leadership, 29-30, 138-139; Philippines' SHOP, 4; and the state, 139; theoretical continuum, 143 Labeling process, and service providers, 17 Language politics, SHOPs strategy, 19 Laws for the Protection of Disabled Persons (Revised 1997), Taiwan, 31-32 Leadership: CDPF, 2, 3, 36-37; DPT, 32-33; Hong Kong's SHOPs, 25, 37-39; Japan SHOP survey, 94; JCILC, 39; organization/leadership analysis, 133; political participation, 55-56; SHOPs characteristics, 36; Taiwan SHOPS, 41-42 Leadership skills, SHOPs, 36 Leadership style: Japan SHOP survey, 94; Thai SHOP survey, 119; Vietnam SHOP survey, 125-126 Leadership training: DPT, 33, 42; ESCAP sponsorship, 67; Hong Kong SHOP survey, 87-88; Japan SHOP survey, 97; KAMPI, 30, 40-41; Mainland China SHOP survey, 77; Philippines SHOP survey, 103; Taiwan SHOP survey, 112; Thai SHOP survey, 120; Vietnam SHOPs, 43,44, 126 League of Welfare Organizations of the Disabled (LWOD): establishment of, 31, 140-141; and ESWF, 41; membership, 30; organization, 30-31,41, 141; Taiwan's SHOP, 3; theoretical continuum, 143 Legal research strategy: Hong Kong SHOP survey, 90; Mainland China

Index SHOP survey, 80; Vietnam SHOP survey, 128-129 Legislation, antidiscrimination, 48-49, 104 Levy system, employment quotas, 57-58, 66-67 Litigation, Thai SHOP survey, 121 Liu, Xia, 41 Lobbying strategy, 107, 128-129 Lottery, DPT, 33-34 "Magic gift," 36 Mainland China: CDPF leadership, 36-37, 137; CDPF organization, 22-24, 137, 148; employment quota/levy system, 58, 66; multi-sector approaches, 148-149; National Day of Disabled Persons, 50; pre-PRC SHOPs, 21-22; Protection of Disabled Persons law, 79; role models, 53-54; SHOP research, 3; SHOP strategies, 55, 79-80; SHOP survey, 71-81; social inclusion analysis, 134, 136; and WTO, 61 Malaysia, Asian financial crisis, 61-62 Marital status, 72-73 Media, Philippines SHOP survey, 104 Medical disability, definition of, 10 Membership: CDPF, 22; DPT, 32, 42; Hong Kong SHOPs, 37, 84-85; Japan SHOP survey, 94-96; Japan's ILCs, 27; KAMPI, 29, 40, 103; LWOD, 30; Mainland China SHOP survey, 71-72; Philippines SHOP survey, 102-103; SHG, 14, 15; SHO, 14-15; study questionnaire, 4, 5; Taiwan SHOP survey, 110; Thai SHOP survey, 117-118; Vietnamese SHOPs, 43, 124-125 Membership participation: Hong Kong SHOP survey, 85; Japan SHOP survey, 94; Mainland China SHOP survey, 75; Philippines SHOP survey, 103-106; theoretical examination of, 132 Men: Mainland China SHOP survey, 71; Thai SHOP survey, 117; Vietnam SHOP survey, 123,124

Index Mental disabilities, self-help organizations, 8 Mentors, leadership training, 103 Ministry of Labor, War Invalids and Social Affairs (MOLISA), Vietnam, 34 Mohamad, Mahathir, 61-62 Morris, Lord Alf, 143 Mutual aid/help, 2, 16 Namsiripongpun, Wiriya, 53 National Assembly of Associations, DPT, 32, 33 National Association of the Deaf, Thai partnership, 120 National Council for Establishment of Independent Living Centers of Disabled Persons, Japan, 26 National Council for the Welfare of Disabled Persons (NCWDP), Philippines, 28-29,30,139 National Council on Social Welfare, Thailand, 32, 140 National Day for Disabled People, CDPF, 24 National Self-Help Clearinghouse, organization of, 8 National Seminar on Access, CDPF, 24 Negotiation strategy: Mainland China SHOP survey, 79-80; Philippines SHOP survey, 107; Taiwan SHOP survey, 114; Thai SHOP survey, 121; Vietnam SHOP survey, 128-129 New Zealand, Human Rights Commission, 49 Nguyen, Thao, 124 Nongovernmental organizations (NGOs): civil society requirements, 45; and SHOPs, 2, 15, 16, 17; sustainable development agenda, 65; Taiwan SHOP survey, 113-114 North American Free Trade Agreement (NAFTA), globalization, 61 Organization: CDPF development, 22-24; DPT, 32, 33, 42; Hong Kong's SHOPs, 25, 37; Japan's SHOP'S, 26; JCILC, 39; KAMPI, 29-30; LWOD, 30-31

187 Organization and leadership: Hong Kong SHOP survey, 85-88; Japan SHOP survey, 93, 94; Mainland China SHOP survey, 75-78, 137; Philippines, 103-106; SHOPs, 16; study questionnaire, 4, 5; Taiwan SHOP survey, 110-113; Thai SHOP survey, 119-112; theoretical examination of, 131, 132-134; Vietnam SHOP survey, 125-128 Outside participation: Hong Kong SHOP survey, 89; Mainland China SHOP survey, 78; Philippines SHOP survey, 107; Taiwan SHOP survey, 110, 112-13 Paid leadership: Hong Kong SHOP survey, 88; Japan SHOP survey, 96; Mainland China SHOP survey, 77; organization/leadership analysis, 133; Taiwan SHOP survey, 111,112; Thai SHOP survey, 121; Vietnam SHOP survey, 126 Parents Association for Persons with Intellectual Disability (PAPID), Taiwan, 31 Partner organizations: Hong Kong SHOP survey, 88; Japan SHOP survey, 96-98, 100; Mainland China SHOP survey, 78-80; Philippines SHOP survey, 106-107, 108; SHOPs relationships, 16-17; social inclusion analysis, 134-135; study questionnaire, 4, 5; Taiwan SHOPs, 41, 113-114; Thai SHOP survey, 120; Vietnam SHOP survey, 128-130 Patibatsarakich, Narong, 32-33, 140 Paul Harris Humanitarian Award, CDPF, 37 "People First" movement, 8, 16 People First Workers (London), self-advocacy, 16 People with disabilities (PWD): Japanese services to, 26; Mainland China, 79; Philippines, 28-29 Philippines: development of SHOPs, 28, 40; and KAMPI, 138-139; organization/leadership analysis, 133-134;

188 SHOP research, 3; SHOP strategies, 55, 108; SHOP survey, 101-108 Political participation, SHOPs strategy, 55-56 Poverty, and disability movement, 148-149 Presentation strategy: Hong Kong SHOP survey, 90; Philippines SHOP survey, 107; Taiwan SHOP survey, 114; Thai SHOP survey, 121; Vietnam SHOP survey, 129 President's Committee on Employment of People with Disabilities of the United States, 35 Primitive Cultures, 11 Professionals: and JCILC, 39; organization/leadership analysis, 133; and SHGs, 15; and SHOPs, 15, 16; Western issues, 2 Protection of Disabled Persons, Mainland China, 79 Public education, 48, 52-53 Public policy, 30, 33 Questionnaire, 4-6 Ratchasuda College, Thai partnership, 120 Redemptorist Centre, Thai partnership, 120 Regard by local, national, and international organizations. See Status Regional Inter-Agency Committee for Asia and the Pacific (RICAP), ESCAP, 64 Rehabilitation Alliance Hong Kong (RAHK): Hong Kong's SHOP, 4; and state, 137-138; theoretical continuum, 143 Rehabilitation International (RI): founding of, 143; Mainland China, 21-22, 37, 143; World NGO Summit, 69 Rehabilitation of Disabled Persons Act, Thailand, 34, 57, 140 Rehabilitation services: advocacy, 122; and Independent living, 98, 99; social inclusion analysis, 134; Vietnam SHOP survey, 128 Relationship with society. See International relations

Index Respondents: Hong Kong SHOP survey, 83-84; Japan SHOP survey, 93-93; Mainland China SHOP survey, 71-72; Philippines SHOP survey, 101-102; Taiwan SHOP survey, 109-110; Thai SHOP survey, 117; Vietnam SHOP survey, 123-124 Role models, 16,53-54 Rule 18, self-help organizations, 8, 20 Sectoral representation, 40, 138, 140 Self-advocacy, 16-17,47, 55 Self-care, health promotion, 2 Self-help, 9-10 Self-help groups (SHGs), 14, 15 Self-help movements, 8, 17, 18, 19 Self-help organizations (SHOs), 14-15 Self-help organizations of people with disabilities (SHOPs): characteristics of, 8-9, 12; and civil society, 17, 18-19, 45, 47, 59; concept, 1, 8; conceptual dimensions of, 9-12, 146-147; culture of, 11-12; definition of, 3; diversity of, 1-2, 12, 54-55; enhancing solidarity, 147-149; history of, 7-8; internal tensions, 15, 16-17; internationalization of, 62-64; leadership of, 15, 36-44; leadership training, 67; membership, 14—15; organization of, 15, 21-35; and partnership organizations, 16-17; political participation, 55-56; roles of, 2, 15; and social movement, 17, 18, 19; social capital, 47-48; and society, 17-18; theoretical continuum, 143; theoretical examination of, 132-147; UN roles of, 2, 62-63 Self-Help philosophy: Hong Kong SHOP survey, 85; Mainland China SHOP survey, 75; Vietnam SHOP survey, 123 Self-helpers, Western issues, 2 Service providers. See Direct service SHOP image: Hong Kong SHOP survey, 89-90; Japan SHOP survey, 97; Mainland China SHOP survey, 74-75, 78-79; social inclusion analysis, 135; Thai SHOP survey, 118; Vietnam SHOP survey, 128

Index Single-disability, SHOPs, 54, 63-64, 145 Skills/strategies: Hong Kong SHOPs, 55, 90; Japan SHOPs, 55, 98, 100; Mainland China SHOPs, 55, 79-80; Philippines SHOPs, 55, 107; social inclusion analysis, 135; Taiwan SHOPs, 55, 114-115; Thai SHOPs, 55, 121; Vietnam SHOPs, 55, 128-130 "Small government and big society," 23 Social capital, 46-48 Social inclusion, theoretical examination of, 131,134-136 Social movements, globalization of, 62 Social networks, Asian culture, 59, 63-64 Society for the Support of Hanoi's Handicapped and Orphans, 34 Special Nonprofit Organization Law, Japan, 28 Standard Rules: action agenda, 8, 20; adoption of, 144; authority of, 63; monitoring of, 68 State Council Commission n Women and Children Affairs, Mainland China, 148 State Council Coordinating Commission on Disability, Mainland China, 148 Status: Hong Kong SHOP survey, 89; Japan SHOP survey, 97; Mainland China SHOP survey, 78; Taiwan SHOP survey, 113; Thai SHOP survey, 121; Vietnam SHOP survey, 128-129 Strategies. See Skills/strategies Swedish International Development Assistance, and DPT, 34 Tachikawa Center for Independent Living, Japan, 27 Taiwan: and LWOD, 140-141; organization/leadership analysis, 132-133; SHOP research, 3; SHOP strategies, 55, 114-115; SHOP survey, 109-115 Thai National Council on Social Welfare, 50, 140 Thailand: accessible transportation, 57; antidiscrimination legislation, 49; and

189 DPT, 32-34,42-43, 117, 139-140; FESPIC Games, 51; International Day of Disabled Persons, 50-51; organization/leadership analysis, 132, 134; Rehabilitation Law, 34, 57; SHOP research, 3; SHOP strategies, 55, 121; vocational training, 52; Year of Education for Disabled People, 51 Trade, globalization of, 61 Traditional Chinese medicine, 81 Transactional leaders, 36, 138 Transformational leaders, 36, 39, 137, 139,140-141 Tribunals, discrimination cases, 49-50 Trust, 46,47 Tugwell, PWD, 104 United Nations (UN): Decade of Disabled Persons, 1, 3, 19, 20, 143-144, 145; ESCAP agenda, 1, 63, 144; human rights sanctions, 62; International Day of Disabled Persons, 50; IYDP, 1, 19, 20,21,26, 39, 54, 135, 143; Peace Messenger Award, 37; Standard Rules on the Equalization of Opportunities for Persons with Disabilities, 8,20,63, 68, 144; World Program of Action Concerning Disabled Persons, 1,2, 19, 20,63,143-144 United States: independent living movement, 143; President's Committee on Employment of People with Disabilities, 34; social capital decline, 47 Vietnam: absence of employment quotas, 66; and BF, 142; early SHOPs, 34,35; organization/leadership analysis, 132-133; SHOP, 34,35,43,44; SHOP research, 3; SHOP strategies, 55, 128-130; social inclusion analysis, 135 Vocational rehabilitation, SHOPs role, 2 Vocational training, Thailand, 52 "Voice of our own," 1 West: language politics, 19; self-help groups, 2, 7-8 Women: Hong Kong SHOP survey, 83; Mainland China SHOP survey,

190 71-71; Philippines SHOP survey, 102, 103; self-help organizations, 8; Taiwan SHOP survey, 109, 110; Thailand, 118; Vietnam SHOP survey, 124-125 World Bank, 52, 65 World Blind Union, 69, 144 World Federation of the Deaf, 69, 144 World Health Organization (WHO), SHOPs role, 2

Index World NGO Summit: CDPF, 24, 37, 69; single-disability groups, 145 World Program of Action Concerning Disable Persons: establishment of, 63, 143-144; and SHOPs, 1, 2, 19, 20 World Trade Organization (WTO), 61, 62 Year of Education for Disabled People, 51

About the Authors JOSEPH K. F. KWOK is Associate Dean and Associate Professor in the Department of Applied Social Studies, City University of Hong Kong. He is also the co-chief editor of the Asia and Pacific Journal on Disability. RAYMOND K. H. CHAN is Assistant Professor in the Department of Applied Social Studies, City University of Hong Kong. W. T. CHAN is Professor and Head of the Department of Social Work, Hong Kong Shue Yan College. He is also Honorary Research Fellow of the Department of Applied Social Studies, City University of Hong Kong.