COMMUNITY-BASED REHABILITATION IN SOUTH EAST ASIA:
CASE STUDIES FROM INDONESIA AND MALAYSIA
A Dissertation Submitted to the School of Development Studies
of the University of East Anglia
in Part-fulfilment of the Requirements for the Degree of Master of Arts.
(*All figures and tables are not included in this document. Number of pages in "Table of Contents" are not correlated to actual page numbers. Comments and suggestions are very welcome to e-mail: firstname.lastname@example.org )
TABLE OF CONTENTS
CHAPTER ONE: APPROACHES AND DEFINITIONS 1
1.1. Introduction 1
1.2. Purpose of Study 3
1.3. Methods 3
1.4. Definition of Disability 4
CHAPTER TWO: APPROACHES OF COMMUNITY-BASED REHABILITATION 12
2.1. Rehabilitation 12
2.2. Community-Based Rehabilitation 14
2.3. Participation and Empowerment 19
CHAPTER THREE: MALAYSIA - CASE STUDY 32
3.1. Introduction 32
3.2. Disabled People 32
3.3. Current System, Structure, and Programmes 34
3.4. CBR in Malaysia 36
3.5. CBR Programme Implementation 38
3.6. Analysis and Lessons 43
CHAPTER FOUR: INDONESIA - CASE STUDY 47
4.1. Introduction 47
4.2. Disabled People 47
4.3. Rehabilitation 48
4.4. CBR Development and Training Centre 50
4.5. CBR Project of CBRDTC 50
4.6. Participation of Disabled People 53
CHAPTER FIVE: PARTICIPATORY RURAL APPRAISAL (PRA) AND APPROPRIATE TECHNOLOGY (AT): LESSONS LEARNED FROM PARTICIPATION IN INDONESIA 59
5.1. Participatory Rural Appraisal (PRA) 59
5.2. Review of PRA from the Perspective of Participation 62
5.3. Development of Appropriate Technology 66
5.4. Comparison of LBK and MOTIVATION 67
5.5. Lessons 69
CHAPTER SIX: CONCLUSION 74
6.1. Importance of Participation of Disabled People 74
6.2. Obstacles to Participation of Disabled People in CBR 76
6.3. The Major Obstacle of Participation: Rehabilitation Professional 77
6.4. Implication for the Future of CBR: Strategies to Promote Participation of Disabled People 79
Appendix A: Map of Malaysia and Indonesia 84
Appendix B: Stratification of the Rehabilitation Services of Department of Social Affairs 85
Appendix C: Number of Disabled People who Received Services in Central Java 86
Appendix D: Map of Karang-Pucung by PRA 87
Appendix E: Wheelchairs of MOTIVATION and Loka Bina Karya 88
1. CHAPTER ONE: APPROACHES AND DEFINITIONS
More than 80 per cent of the world population are living in so called developing countries, and 70 per cent of them in rural areas (Tjandrakusuma, 1989: 8). Even though many of them are facing problems, such as poverty or discrimination, disabled people are more deprived of their opportunities to participate in the full range of social activities, and left most behind in the development process.
The prevalence rate of moderate and severe disabilities is estimated as 4.5 per cent, or one in twenty people in developing countries (1) (Helander, 1993a: 22), but the ratio among people suffering poverty rises to one in six (SIDA, 1995: 1). This implies a strong relation between disability and social issues including poverty as a cause and a consequence in developing countries (SIDA, 1995: 1, 11; Mendis, 1993a: 11-4).
However, many rural development programmes which aim at the alleviation of poverty, such as micro finance, exclude disabled people or simply ignore them by not seeing them as the beneficiaries or targets of their programmes (2). In addition to this, conventional approaches to the rehabilitation of disabled people, which focus on the mere recovery of body functions and rely on professionals and institutions, cannot deal with disability issues as a whole, and even provision of service delivery can only cover less than two per cent of those in need (Nakanishi and Kuno, 1997: 18; Helander et al., 1989: 7). Community-Based Rehabilitation (CBR) has emerged as an alternative strategy to deal with disability issues as a whole in this situation.
During the last two decades, interpretations of problems have changed in both rehabilitation and development circles. In the former, the focus of intervention has been changed from the physical independence in Activity of Daily Living (ADL) to the improvement of Quality Of Life (QOL), then the equal participation of disabled people has become a crucial point. In the latter, 'top-down' approaches of 'blue-printed programmes' have been criticised and 'bottom-up' and 'grass-root' programmes, hence participation of beneficiaries, have been developed. In both circles, participation has become the key notion for success.
Although 'participation' has appeared in the statements or concepts of CBR, many programmes seem not to deal with 'participation' in practice, which undermines the whole practice of CBR. Specific policies and interventions of CBR in terms of development, especially participation and empowerment, are less developed compared to the rehabilitative aspects of CBR, despite their being the basis of the whole programme.
1.2. Purpose of Study
The principal purpose of this study is to analyse two CBR programmes with which I was involved for six years, and to provide feedback to the future practice, especially for the improvement of the development aspects of these programmes. Specific objectives are to critically analyse and evaluate: 1) the mode of participation of principal stakeholders: disabled people, and; 2) the interaction between disabled people and rehabilitation professionals, from the empowerment point of view. The effectiveness of Participatory Rural Appraisal (PRA) as a tool for research, analysis and empowerment, is also examined in a specific context.
Case studies and a literature review are used. The two CBR programmes in Malaysia and Indonesia in which I was involved are examined. Both primary and secondary data were gained from my own field research, project reports and documents, and several articles on these programmes. The studies focus on the mode of participation of disabled people from two aspects: 1) as contributors or decision makers, and; 2) as beneficiaries. In the Indonesian case study, the outcomes of PRA and the development of Appropriate Technology (AT) are critically reviewed.
The literature review is carried out on CBR and related areas from the two key major disciplines: disability studies and development studies, especially focusing on empirical and theoretical studies on participation. This review informs the case studies and lessons are learned by comparing the case studies and secondary literature.
1.4. Definition of Disability
Two particular interpretations or models of disability are currently prevalent: the so-called medical model, and the social model of disability (3). Although both models view disability differently, there is an attempt to synthesise the two models in order to deal with the totality of disability.
The Medical Model
WHO developed the International Classification of Impairment, Disability, and Handicap (ICIDH) in 1980 as a tool for the classification of the consequences of disease, and defined disability within a linear causal linkage between impairment and handicap (Figure 1.1, Box 1.1).
This classification has three characteristics: it views disability as a personal problem and locates disability mainly within the individual; it assumes the causes of the problems directly stemmed from health conditions, e.g. disease, trauma, functional limitations or psychological losses; and it perceives medical interventions as the only possible response to disability (WHO, 1998b, 4).
Box 1.1: Definition of Disability in the Medical Model
Impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function.
Disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner, or within the range, considered normal for a human being.
Handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual.
Source: Peat, 1997: 5
This classification of disability is widely accepted by rehabilitation professionals, hence in CBR. However, it has long been criticised and rejected by disabled people themselves.
The Social Model
Disabled Peoples' International (DPI), the largest international organisation of disabled people, has opposed the ICIDH since its inception in 1981, and uses a different definition of disability (Box 1.2) (Oliver, 1994: 63; Hurst, 1998: 1).
Box 1.2: Definition of Disability in the Social Model
An impairment is the loss or abnormality plus the effect on function.
A disability is the disadvantage or restriction of activity caused by social factors which take little or no account of people who have impairments and thus exclude them from the mainstream of social activities.
Source: cited in Finkelstein, 1992: 2
From their own direct experiences, disabled people see themselves as disabled by the constraints and negative attitudes imposed on them by a discriminating society - not by their impairments or limitation (Hurst, 1998: 1). Therefore, they do not see the causal linkage between disability and impairment, and focus on the real causes of disabilities, i.e. discrimination and prejudice (Table 1.1)(Oliver, 1996: 39)(4).
However there are also several critiques to this model or the dichotomy of models of disability in the context of developing countries. Lang (1998a: 7-8) describes disability as a far more complex phenomenon than can be solely and adequately explained by social oppression and discrimination. He espouses the possibility of educational intervention rather than conflict by viewing the major causes of disability as fear and ignorance of people rather than oppression. Werner (1998: 6-7) emphasises the importance of dealing with impairments in the physical context, in addition to dealing with disability in the social context, since millions of poor disabled people do not meet with adequate services in developing countries.
Attempts of Synthesis
Polarised approaches of the medical model and the social model present a thesis-antithesis opposition, but they may be seen in a harmony of synthesis; especially if one tries to capture the interaction of the various dimensions of disability. ICIDH has been revised since 1980 (5), and remarkable progress has been made by WHO itself in that it now recognises that the 'pure' medical model, hence ICIDH, is inadequate to deal with disability issues as a whole (Ustun, 1998a: 4; Oliver, 1996: 36). For this reason, 'ICIDH-2 beta' or 'International Classification of Impairment, Activity, and Participation (ICIAP)' has been developed.
ICIAP has been developed as a scientific tool for the shift in paradigm from the purely medical model to an integrated biopsychosocial model, and aims to provide the various means to map the different dimensions and domains of disabilities (Ustun, 1998a: 21; WHO, 1998b: 6). ICIAP also aims to be a communication tool, by neutralising the terminology; several terms have been dropped including 'disability', because of the unusual situation of consensus by misunderstanding between rehabilitation professionals and disabled people (WHO, 1998b: 17) (6). ICIAP explains disability in terms of its interactive nature, rather than a linear causal linkage, and defines three dimensions of disability (Box 1.3, Figure 1.2).
Box 1.3: Definition of 'Disablement' in Synthesis Model
DISABLEMENT is used as an umbrella term to cover all the negative dimensions of ICIAP (i.e. impairments, activity, limitations and participation restrictions, formerly referred to disabilities and handicaps), either together or separately.
IMPAIRMENT is a loss or abnormality of body structure or of a physiological or psychological function. (Examples: loss of a limb, loss of vision.)
An ACTIVITY is the nature and extent of functioning at the level of the person. Activities may be limited in nature, duration and quality. (Examples: taking care of oneself, performing the activities required of a job.)
PARTICIPATION is the nature and extent of a person's involvement in life situations in relation to impairment, activities, health conditions and contextual factors. Participation may be restricted in nature, duration and quality. (Examples: being employed, participation in community activities, obtaining a driver's license, being a qualified voter.)
Source: WHO, 1998b: 10-11
In this dissertation, my terminology is based on the ICIAP (Pre-final Draft). Although it is still undergoing field trials and several critiques are raised (7), ICIAP has various advantages compared to others: it reflects contemporary issues and situations especially the two different views of disability in medical and social models; and most importantly, it has developed through the collaboration of both disabled persons and rehabilitation professionals.
In this study, 'disabled people/person(s)' refers to "an individual who is disabled/dysfunctional at any/all levels of; impairment; activity; and/or participation as outcomes of interactions between health conditions and contextual factors" as defined in ICIAP (WHO, 1998b: 10). 'Disabled people/person(s)' and 'people/person(s) with disablements/disabilities' are used interchangeably.
Notes: Chapter One
1. Global estimate of the prevalence rate of moderate and severe disability is 5.2 per cent. This is an aggregate of prevalence of 7.7 per cent for the more developed regions and of 4.5 per cent for the less developed regions (Helander, 1993a: 22).
2. The World Bank defines rural development as 'a strategy designed to improve the economic and social life of a specific group of people - the rural poor' (cited in Harriss, 1982: 15).
3. In the medical model, disability is seen as some terrible event which occurs at random to unfortunate individuals. Then Oliver (1996: 32) calls this model 'the personal tragedy theory of disability', and Finkelstein (1992: 1) says it is more accurate to call this model an 'individualistic' or 'tragedy model' of disability. In this model, you have disability. The social model of disability is also called a 'barriers model' of disability (Finkelstein, 1992: 1-2). In the social model, you are disabled.
4. In other words, disability is seen wholly and exclusively as a social issue. Hurst (1998: 1-3) says that although there is no "normal" human person, disabled people are seen as different - as deviating from what is deemed the normal range of what makes up a human being. Therefore, the management of the problem requires social action, and it is the collective responsibility of society to make the environmental modifications necessary for the full participation of disabled people into all areas of social life. This model assumes that not an individual but a society should be changed, and this is a part of the process of political empowerment of disabled people (Oliver, 1996).
5. The 1994 revision meeting of ICIDH suggested a new definition of 'handicap' to integrate the social concept of disability: "the result of an interaction between an individual with an impairment or disability and the social, cultural or physical environment" (Keer and Placek, 1995: 17).
6. Nagase (1995: 78-80) discussed the confusion of terminology between the medical model and the social model: whereas 'disability' and 'handicap' refer to the functional and social aspects respectively in the medical model, 'impairment' and 'disability' refer to the functional and social aspects respectively in the social model. 'Handicap' is not adopted by the social model, since it is viewed as overtly negative and having oppressive implications when it is used in relation to disabled people. The difference of terms may be simplified as follows.
7. For instance, Hurst (1998), and Pfeiffer (1998).
2. CHAPTER TWO: APPROACHES OF COMMUNITY-BASED REHABILITATION
The World Programme of Action Concerning Disabled Persons (WPA), which was drawn up at the beginning of the United Nations Decade of Disabled Persons (1983-1992), defines 'rehabilitation' as follows.
A goal-oriented and time-limited process aimed at enabling an impaired person to reach an optimum mental, physical and/or social functional level, thus providing her or him with the tools to change her or his own life. It can involve measures intended to compensate for a loss of function or a functional limitation (for example by technical aids) and other measures intended to facilitate social adjustment or readjustment (DPI, 1985: 3).
In the social model of disability, the term and concept of 'rehabilitation' is not positively applied; instead the key terms used in the debate are 'mainstreaming', 'de-institutionalisation', or 'equalisation of opportunity', since disability is viewed as social constraint in the social model of disability (ILO, 1989: 2). The term and concept of 'equalisation of opportunities' was introduced in 1981 and defined in the WPA as follows.
Equalisation of opportunities means the process through which the general systems of society, such as the physical environment, housing and transportation, social and health services, educational and work opportunities, cultural and social life, including sports and recreational facilities, are made accessible to all. This involves the removal of barriers to full participation of disabled persons in all these areas, thus enabling us to reach a quality of life equal to that of others (DPI, 1985, 3-4).
The former concept of rehabilitation aims to deal with 'impairments' and 'activity restrictions' at the individual level, whereas, in contrast, the latter concept of equalisation of opportunities aims to deal with 'participation restriction' at society level.
Disabled people face all the problems of disablement, i.e. impairments, activity limitations, and participation restrictions, although their proportions vary and the improvement of impairments does not guarantee the improvement of all aspects of disablement (Helander et al, 1989: 11). In CBR, therefore, strategies to deal with the totality of disablements are required toward the improvement not only of ADL, but also QOL.
WPA clarifies all the objectives of actions concerning disablements, and these comprehensive objectives can be defined as a broader concept of rehabilitation. It consists of measures for the 'prevention of disability', 'rehabilitation' (as the narrow concept mentioned above) and the 'equalisation of opportunity', toward the realisation of the goals of 'full participation' of disabled persons in social life and development, and of 'equality'. In the Joint Position Paper on CBR, WHO, International Labour Office (ILO) and UNESCO (1994: 3) refer to 'rehabilitation' in CBR in terms of this broader concept (1).
In this dissertation, therefore, 'rehabilitation' of CBR refers to this broader concept, unless mentioned, i.e. a comprehensive and bi-oriented process toward both individual and society, aiming at the enablement of disabled people and the realisation of a society where disabled people have equal opportunities for self-actualisation.
2.2. Community-Based Rehabilitation
Community oriented rehabilitation schemes or CBR, have been in existence since the early 1960s in many developing countries (Miles 1985: 7). However, CBR received increased attention by being identified by WHO as an innovative new approach to replace the institution-based approach, alongside the trend of Primary Health Care (PHC) toward the realisation of the goal of the Alma-Ata Declaration; 'health for all by the year 2000' (Nakanishi and Kuno, 1997; Lysack, 1992)(2). At the same time, Werner developed an approach of CBR focusing on the role and participation of disabled people in Mexico, while Tjandrakusuma developed an approach which focused on the aspect of community participation, and included consciousness raising and community organisation in its programme in Indonesia.
CBR is a developing concept and approach. Although the first definition of CBR in 1981 by WHO emphasised service delivery at the community level, the importance of the social development aspect was gradually recognised and explained as a "democratisation of rehabilitation" in WHO's CBR manual (Helander et al, 1989: 16). This trend has been developed further and CBR is defined as follows in the joint position paper of CBR.
Community-based rehabilitation is a strategy within community development for the rehabilitation, equalisation of opportunities and social integration of all people with disabilities. CBR is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health, education, vocational and social services (emphasis added) (WHO, ILO and UNESCO, 1994: 3).
Likewise, many CBR practitioners define CBR by including two important characteristics: the appliance of community development approaches, not merely an expansion of rehabilitative service delivery at community level, hence focusing on participation and empowerment of the community including disabled people; and comprehensiveness in terms of programmes and participants (3).
Three Approaches to CBR
WHO divides approaches in rehabilitation into three types; institution-based approach (IB); outreach approach (OR); and community-based approach (CB) in its manual, and this distinction is accepted widely by CBR practitioners.
Nakanishi (1989) contrasts CB and IB/OR from the civil rights movement point of view, and emphasises this distinction in order to clarify who controls the resources, although she recognises that the differences between these two approaches in practice are primarily a matter of degree rather than their being at either extreme (ESCAP, 1989b: 31). On the other hand, Tjandrakusuma (1992: 8) said it would fail to provide a true understanding of CBR to explain CBR as being in a dichotomy with IB, as CBR is neither in opposition to IB, nor do they complement each other. CBR should be thought of as an entire continuum, or system, with many different aspects. Although these explanations of approaches seem different, they share the fundamental concept described in the definition of CBR, and may be synthesised as shown in Table 2.1.
The Institution-Based Approach (IB)
IB focuses on curative service delivery at institutions such as hospitals. Although advanced services can be provided, it often limits beneficiaries and excludes disabled people who are not 'suited' to these institutions or services. This approach suggests that only the professionals who have expertise can provide appropriate services at institutions. Then the relationship between professionals and disabled people is distinct as 'giver and receiver', and the participation of the community is not expected.
The Outreach Approach (OR)
OR is the approach in which professionals based in institutions outreach to the villages where there are no facilities. Although it succeeds in converting the 'places' of service delivery from institutions to homes or villages, OR inherits the characteristics of IB, and its practice strongly depends on professionals who belong to institutions. Therefore, disabled people who are evaluated by professionals as 'less-efficient patients', e.g. multiple-impaired or older people, are often excluded from services in OR. Community involvement may be mobilised in the name of participation, but it is often limited merely to man-power in the implementation period, not as subjects of the process or representing resources with various abilities.
The Community-Based Approach (CB)
CB is based on the notion that people are the subjects of the development process of their own community, and capable of having responsibility for it. Multi-dimensionality of the lives of disabled people is respected, then services become more comprehensive and serve their daily needs. The relationship between professionals and people are reversed: professionals are no longer the single decision makers but enablers or catalysts, and people are the subjects who have rights and the responsibility to analyse and decide their needs.
Confusion between Community-Based and Community Level
In CBR, 'community-based' particularly refers to the approaches or interventions with the basic principles as mentioned above, although it varies depending on the situation (Helander, 1993a: 8). However, since the introduction of CBR by WHO, its name has gained popularity, and is applied to many programmes regardless of their approaches, and as a result, many programmes which only expand the geographical areas of service delivering by outreach approaches or small scale institution-based approaches are referred to as CBR.
This overuse of 'CBR' has led to confusion about what CBR means, especially the confusion between 'community-based' and 'community-level', and many practitioners draw attention to this confusion (4). The other reason for this confusion may be the parallel trends of PHC: PHC or comprehensive PHC, and selective PHC (SPHC), which take different approaches and views of health (5).
Mendis (1989: 166-8) says even if therapy services are carried out by community workers in the community, they are not CBR unless they contain community development aspects, i.e. community participation and empowerment, and comprehensiveness. Programmes which are based on the concept of IB or OR can be implemented 'at community-level', but it is not CBR; likewise CBR is not only a programme at community-level, but implemented at any level of society, and institutions and professionals can be utilised if they are integrated in CBR (Helander, 1993a: 6; Helander et al., 1989: 25).
2.3. Participation and Empowerment
Participation and empowerment are the two sides of the same coin, and empowerment is seen as the ideal mode of participation. In the 1990s both 'participation' and 'empowerment or enablement' have become 'buzzwords' in development.
However, what goes under the name of participation and empowerment takes on multiple forms, and serves different interests, i.e., concepts are highly contested (White and Tiongco,1997: 107). As a consequence, approaches then outcomes of participatory development projects including CBR are varied, and it is important to clarify several concepts of these terms for the further discussion on CBR.
Typology of Participation
Several concepts of participation are discussed based on the typology, and they seem to share similar criteria in distinguishing the modes of participation by analysing whose interests are served; i.e. whether implementor interests, such as efficiency or sustainability, or peoples' interest: empowerment.
Pretty (1995: 1251) (Table 2.2) said that two overlapping schools of thought and practice of participation have evolved. One views participation as a means of increasing efficiency, i.e. co-opting people to support a project in terms of manpower. The other sees participation as a fundamental right, in which the main aim is to initiate mobilisation for collective action, empowerment, and institution building. In reality, participation is more often used for the co-option: i.e. people are asked to participate in an operation of no interest to them, in the name of participation. Similarly, White and Tiongco (1997) (Table 2.3), and Chambers (1997) (Table 2.4), and explain that participation should be an empowerment process but it is often utilised for other goals such as cost-effectiveness.
These three typologies are useful analytical tools, and the major types of participation may be epitomised as: just a name; as a means for other ends; and as a goal of empowerment, although the mode of participation of CBR would be varied in practice.
Power and Empowerment
Empowerment was introduced in the 1960s as the "idea that some can act on others to give them power or enable them to realise their own potential" (Nelson and Wright, 1997: 7), or as "the desirable state of affairs in which individuals have choice and control in everyday aspects of their lives: their labour, reproduction, access to resources, etc." (Hewitt and Ines, 1992: 91).
However, empowerment, therefore power itself, is a highly contested notion as is participation. In CBR, the definition of empowerment would be diverse depending on how power is defined, and the crucial questions may be who can empower disabled people in the community and how. Currently, three models of power are used to analyse different aspects of empowerment in development studies, which are based on different metaphors, and convey very different ideas about 'what power is and how it works' (Table 2.5).
The First Model: Human Development
This model uses a metaphor of human development, and suggests that power can grow infinitely as human abilities do, and is called 'power to'. It views the growth of one person not necessarily negatively affecting another; power, then, is seen as a 'positive sum' (Nelson and Wright, 1997: 8).
Rowland (1995: 103; 1997: 110-28) discusses three dimensions of empowerment in this model: personal, close relationships, and collective. The first dimension, 'personal', is the development of the sense of self, confidence and capacity. The second, 'close relationship', is the development of one's abilities to negotiate and influence decision making. The third, 'collective', is to work together to achieve a more extensive impact than each could have had alone.
The Second Model: Political Conflict
This model consists of three sub-models, but all of them see power as political conflict. Power is viewed as coercive and centred in institutions such as the state; the power relation is seen as a 'zero-sum relation'.
A one-dimensional view of power is based on pluralist theory, and developed by Dahl and Polsby as a critique to the elitist theory of power, i.e. there is no single elite in a given society, but power is distributed among different groups (Lukes 1993: 11-15). Power is seen in the actual decision-making process in the political arena as observable conflict, and peoples' interests are seen as policy preferences which are expressed through political participation in the formal political system. Therefore, empowerment may mean to allow the beneficiaries or their representatives to win in the political arena.
A two-dimensional view of power is developed by Bacharach and Baratz as a critique to the pluralist theory of power, which overestimates the power in the political decision-making process (Lukes 1993: 16-20). For instance, equal rights of minorities or environmental issues may not be on the agenda because of restriction, coercion, media control, bribery or threats by 'powerful' people who may lose their advantage by putting these topics on the agenda in the decision making process. Power is seen in both decision-making and non-decision making, so conflict may not be overt but covert, and peoples' interests are seen as policy preferences or grievances. Persons or groups who create barriers to the public airing of policy conflict, i.e. agenda setting, have power. Empowerment, therefore, may mean to help beneficiaries to raise their issues in the political arena, i.e. put their issues on the agenda in decision making process.
A three-dimensional view of power is developed by Marxists as a critique to the two-dimensional view of power (Lukes 1993). In contrast to one- and two-dimensional views of power which assume people are aware of their interests, and individuals exercise their power, the three-dimensional view of power conceives that people are unaware of their real interests, so power is seen as the interests of a particular class of people, not of individuals. Power may not be seen as observable conflict but latent conflict, and people can have power without conflict by using their authority or manipulation to shape peoples' perception or false-consciousness of their understanding of reality, i.e. make people accept the present situation as unchangeable. Empowerment, therefore, takes approaches of conscientization or awareness raising of real interests.
Freire (Freire and Shor, 1987: 108-15) argues that empowerment should be thought of in social class terms, and said "the question of social class empowerment...makes empowerment much more than an individual or psychological event. It points to a political process by the dominated classes who seek their own freedom from domination, a long historical process". This view of empowerment is taken by numerous grass-root development organisations as a theoretical basis toward the liberation of oppressed people. However, the fundamental question still remains in this model: how the 'real interests' of people can be defined and by whom (Lukes, 1993: 26).
The Third Model: A Decentred View
Foucault's view of power is different from the traditional view of power (Table 2.6), and the two fundamental differences are: power is not seen in terms of a zero-sum relation; and it challenges the notion of the sovereignty of a power - centred view of power. Hence, this model is called the decentred view of power (Nelson and Wright, 1995: 9-10)
Foucault's theory of power consists of two key concepts: disciplinary power and bio-politics. The notion of disciplinary power is that power becomes effective through its surveillance or assessment in institutions, such as school or prison, then these disciplinary forms constitute power. The notion of bio-politics is that a particular interpretation of science in people's everyday lives builds the notion of 'normality and anomaly' in their discourse, and it prevails as everyone's knowledge, i.e. discourse, hence it controls peoples' thought.
The notion of empowerment is seen as problematic in this model, since power is decentred and omnipresent, hence there is no ruling class nor fixed distinction between powerful and powerless people, but power flows. This decentred view of power undermines the theoretical basis of emancipatory movements, including Freire, and even suggests that revolution may not challenge power relations.
Notes: Chapter Two
1. In this joint position paper rehabilitation is explained as an objective of CBR and refers to the broader concept; and Helander (1993a: 15-7) also defines rehabilitation of CBR in a comprehensive way.
Although rehabilitation in CBR means a broader concept, it is often referred to merely as an individual recovering process in terms of medical or physical conditions by treatment or therapy in general (Ishiwata, 1996: 163; Tjandrakusuma, 1997a), and it causes the ambiguity of understanding of the contents of CBR, i.e. expansion of medical service provisioning or social development. In order to avoid the confusion of narrow and broader concepts of rehabilitation in CBR, United Nation Economic and Social Commission Asia and Pacific (ESCAP) uses a more explanatory expression rather than just using the word 'rehabilitation' to explain the contents of CBR: "community-based approach to disability prevention and rehabilitation and the equalisation of opportunities of disabled persons" (ESCAP 1989b: 6). Similarly, in order to avoid a misunderstanding of CBR by viewing rehabilitation as a narrow concept, ILO (1989) dropped 'rehabilitation' from its name, and developed an alternative term to explain CBR: Community-Integration Programmes (CIP).
2. In PHC, health is seen as comprehensively removing it from the sole responsibility of the medical professionals and highlighting the importance of the social, political, economic and environmental contexts. This implies the necessity to address the root causes of development issues, such as poverty, gender inequalities, and the distribution of resources (Rifkin and Walt, 1986: 561). This view of health is defined in the Alma Ata declaration as follows:
The conference strongly reaffirms that health, which is a state of complete physical, mental and social well being, and not merely the absence of disease or infirmity, is a fundamental human right and that the attainment of the highest possible level of health is a most important world-wide social goal whose realisation requires the action of many other social and economic sectors in addition to the health sector (WHO cited in Werner et al., 1997: 21).
Therefore, PHC is not merely a health service improvement nor an alternative for health care delivery, but a strategy for or process of health development (Rifkin and Walt, 1986: 560). Its components are: health education, food supply and nutrition, water and sanitation; maternal and child health programmes; immunisations, prevention and control of locally endemic diseases; treatment of common diseases and injuries; and provision of essential drugs (Unger and Killingsworth, 1986: 1002). PHC is a social process. Therefore, its strategies are community participation with decentralised health facilities and a back-up referral service; and the involvement of all related sectors, not only the health sector (Wilson, 1992b: 48; Werner et al., 1997: 22).
3. Several key definitions of CBR are in: Helander (1993a: 8), Tjandrakusuma (1989: 5); and ESCAP (1989b: 6-7).
4. Mendis (1989: 166-8) distinguishes 'community-based' (CB) and 'community-level' (CL) by describing three distinctive features of CB or CBR. The first distinctive feature is its emphasis that social change must pave the way for therapies to be effective, rather than the traditional emphasis on therapies alone. The second feature is community responsibility for rehabilitation of its disabled members. The third basic feature is the dissemination of information within communities and the acquisition of skills by communities to enable the realisation of the first two features. She concludes that "community-based rehabilitation does not mean merely that rehabilitation services function at community level, or merely that the community participates in service delivery" (emphasis added) (Mendis, 1989: 167), and explains that the confusion of CB and CL arises from a lack of a development point of view.
Tjandrakusuma (1995b: 1-3) also explains from a similar point of view that the use of community development principles is inherent in the CB concept, and therefore goes beyond mere service delivery at the community level. Helander (1993a: 6) explains that CBR is not merely the rehabilitation at community level, because a referral system is one of the important factors in CBR, and it involves interventions at all levels of society: community, district, provincial and national. Werner (1989: 4) distinguishes CB and CL by the evolving process of a programme: in the concept of CB, programmes grow out of the community, which is different from the programmes planned and directed centrally or internationally and then implemented at the community level.
5. In contrast to the comprehensive concept of health in PHC, health is likely to be seen as 'the absence or eradication of disease' in SPHC, and in practice, health care policies often talk about health in this very limited sense (Wilson, 1992b: 36).
SPHC has developed because the concept of PHC is seen as too wide to plan and manage and is not cost-effective; and it takes a long time to achieve results (Wilson, 1992b: 46). In addition, in the 1980s, many developing countries faced foreign debt and a decline in public spending on health, although they faced serious health problems. Therefore, SPHC developed as an approach that is cost effective; uses 'crisis management' to achieve immediate results; and attracts the attention of governments and donors for funding (Werner et al., 1997: 21-5).
UNICEF has promoted a "Revolution in Child Survival and Development" as an SPHC approach since 1983 in many countries including Indonesia, and has adopted four narrowly selected and prioritised bio-medical oriented approaches: growth monitoring; oral rehydration therapy; breast feeding; and immunisation; known as 'GOBI', or 'GOBI-FFF' for the expanded version which added family planning, food supplements and female education (UNICEF, 1996: 51). In practice, however, GOBI is often trimmed down further to only one or two approaches (Werner et al., 1997: 24).
CBR is not free from these trends, and a selective approach is adopted by many organisations as a strategy of 'CBR'. These programmes specify the 'target' in terms of type of impairments or age instead of serving the community as a whole; and restrict the 'contents' of intervention to service delivery.
3. CHAPTER THREE: MALAYSIA - CASE STUDY
Malaysia is a multi-ethnic country, which consists of 13 states and two federal territories with a total population of 18 million (JICA, 1991: 217) (Appendix: A). Malaysia is relatively stable politically: Barisan Nasional [National Front Party] occupied more than two third of the seats in the latest general election in 1995, and Mahathir Mohamad has been Prime Minister since 1981. Although Malaysia maintained a high economic growth rate until the recent economic recession, both absolute and relative poverty in terms of income level remain as problems, and the gaps between geographical areas, racial groups, and occupations have been getting wider (1) (Table 3.1) (Sushama, 1985: 218).
3.2. Disabled People
Social services for disabled people in Malaysia were started by Christian missionaries in the early 20th Century (Jayasooria, and Ooi, 1994: 97). The Department of Social Welfare (DSW) was established in 1946, and many NGOs were established between the 1950s and the late 1960s, and both set up several institutions (2). Programmes during this period can be characterised as providing relief through institution-based charities by non-disabled people.
Since the 1970s, disabled peoples' movements have emerged (3). The International Year of Disabled Persons (IYDP) in 1981, and the UN Decade of Disabled Persons (1983-1992) had a huge impact and helped to legitimise the concerns of disabled people; i.e. equal rights and opportunity. Alongside this trend, CBR was introduced in 1983 by WHO.
There has been no national census on disabled people, and the appearance ratio of disabled people is estimated based on the sample survey of disabled people in 1958: one per cent of the total population, i.e. 190 000 people in 1998. However, the number of registered disabled people at DSW was only 55 673 by June 1995, and this is far less than the estimated number (Table 3.2) (Mohamad, 1995: 7).
DSW, the main government agent responsible for the welfare of disabled people, defines disablement as "a condition in which any person is unable to ensure for himself/herself wholly or partly the necessities of a normal individual and social life, in his/her physical or mental capabilities" (cited in Malaysian Care, 1994). There is no particular law concerning disabled people, but several acts exist (4).
3.3. Current System, Structure, and Programmes
The Ministry of National Unity and Social Development, which includes DSW, plays an important role in the welfare of disabled people, alongside the other government agencies and NGOs (Figure 3.1).
The rehabilitation section of DSW provides comprehensive services, but their rehabilitative services focus on vocational aspects of people with mild and moderate physical impairments. Although CBR is the programme dealing with disablements, it is implemented under the social development section as a community development programme, with the cooperation of the rehabilitation section (JICA 1995a).
Although the government does not offer a health insurance scheme, 94 per cent of medical institutions are owned by the government, and charges are set relatively low. As for rural health services, Klinik Desa [village clinic] and referral services are implemented. There are about 400 physiotherapists and 200 occupational therapists, but 80 per cent of them are working at government hospitals in major cities (5) (Shuto, 1995).
The Education Ministry is responsible for the education of blind and deaf children. Until recently, education for mentally retarded children was provided only by NGOs (nine centres in 1993). However, since 1987, the Education Ministry has actively started classes for pupils with learning difficulties, and 152 special schools/integrated schools catered for 5 083 such children throughout the country in 1993 (Malaysian Care, 1994).
NGOs play an important role in Malaysia in the provision of service delivery, and more than 60 NGOs, including disabled peoples' organisations and parents' organisations, are involved. The Malaysian Council for Rehabilitation (MCR), which was established in 1973 and consists of government agencies, professional associations and NGOs, plays a co-ordinating role (Nakanishi, 1996a: 215).
3.4. CBR in Malaysia
CBR was first introduced in 1983 in Kuala Trengganu by DSW under the consultancy of WHO, after a thorough survey was conducted in that district with a population of 17 149 people. A total of 275 disabled people were identified and 55 people benefited from this programme then. Later, DSW aimed to expand CBR into every district by the end of 1995, and NGOs also adopted a CBR approach in their programmes (6). In 1992, a total budget of RM 1.1 million went on CBR of DSW, which clearly accelerated its expansion: the total number of CBR programmes of DSW reached 122 by 1997 (CBR Kota Kinabalu, 1997)(Table 3.3; 3.4; 3.5).
The approach of CBR implementation of SWD is to establish a CBR committee at district level, then provide funding assistance to this committee. Although its expansion in terms of geographic areas and number of programmes is remarkable, according to the programme statement, it is characterised by an out-reach approach, or small-scale institution-based approach. Its main aim is to 'rehabilitate' disabled people in their community, rather than change their society for the equalisation of opportunity (Box 3.1).
In this study, the implementation of CBR of DSW was analysed from two aspects focusing on the participation of disabled people: activity and decision making process. CBR in Penang was taken for activity analysis, and CBR in Sabah and Sarawak were taken for decision-making process analysis; because of the unavailability of complete data from one particular state.
Box 3.1: Model, Objective, and Strategy of CBR of DSW*
MODEL OF CBR
CBR is rehabilitation for disabled people which family members and local community support and assist within their own community. Para-professionals and volunteers are primary activators in providing training and skills in rehabilitation. CBR has three models: day-centre based, home-based, and a combination of both.
OBJECTIVES OF CBR
-To rehabilitate the disabled in order to enable them to act as "normal" persons.
-To raise awareness of the community of the existence of disabled people who need
support within their own community.
-To raise awareness of rehabilitation and provide information to disabled people,
their families, and close relatives.
-To support and motivate disabled people and family members so that they receive
attention in rehabilitation.
-To realise a caring society
STRATEGIES OF CBR
-Utilising a certain manpower which is integrated in the community in order to
achieve an united effort from disabled people, family members, and local
-Utilising local resources in the process of rehabilitation.
-Implementing rehabilitation which is easy to understand in a systematic but
-Forming CBR committees with family members of disabled people, para-
professionals, volunteers, and community members.
* These are translated from Malaysian.
Source: Department of Social Welfare, 1995b: 1-4
3.5. CBR Programme Implementation
The population of Penang was 1 171 000, and the estimated number of disabled people was 11 700, but the number who had registered as disabled was 5 712 in 1997 (Table 3.6). Penang is one of the first states where CBR was implemented in 1989, and there were 16 CBR programmes in 1997. However, CBR of DSW seemed a very selective and isolated programme in terms of both the contents of the programme and the participants, rather than a comprehensive programme which is the principal characteristic of CBR.
The main and sole activity of the 16 CBR programmes was educational day-service in Penang. Although there were 11 other programmes for disabled people under government and NGOs control, CBR of DSW did not co-operate with these programmes, nor referred to them.
The type of activities at centres or visited homes focused on educational aspects, and therapeutic or daily skill aspects were largely ignored. Most programmes did not provide the opportunities for transferring skills and knowledge from CBR workers to family members of disabled people. With the exception of one programme, most centre-based programmes did not require family members to stay with disabled people during the sessions, nor provide extra programmes for them. Six programmes had home-visit schemes, but they were often less than once a week, and only a few visits were possible. Meetings with family members were not held at any CBR programme, nor community-involved programmes, such as awareness raising programmes, from August 1995 - June 1997. There were 28 CBR workers but none of them were disabled people.
A total of 205 people were registered for CBR in 1997, but the majority of registered people who actually used the services were children with learning difficulties, and disabled adults and children with physical impairments were virtually excluded.
Ninety per cent of the registered disabled people to CBR were below 20 years old, and there was no registered adult above 35 years old. Seventy four per cent were people with learning difficulties and no person with visual impairment was registered for CBR. This ratio was different from the ratio of general registration; in particular the ratio of learning difficulties was three times higher than general registration in Penang (Table 3.6; 3.7).
In addition to this, several centres often have only a few children in each session, and 43 per cent or 89 people registered in CBR never or seldom used CBR services. In other words, this CBR served only less than two per cent of the total estimated disabled people in Penang.
Decision Making Process
CBR committees were expected to manage their CBR programmes. However, no disabled people participated in the CBR committees in Sabah and Sarawak (Table 3.8). In fact, DSW viewed disabled people as those to be rehabilitated, not as contributors or decision makers in CBR. Although all CBR committees included parents of disabled people, by assuming they, disabled people and parents, share the same interests, most members were dominated by administration and rehabilitation professionals.
However, in fact, most CBR programmes were under direct control of DSW, and the role of CBR committee was ritual. For instance, DSW headquarters planned and budgeted the introduction of a uniform for participants for every CBR programme in Malaysia without consulting CBR committees.
3.6. Analysis and Lessons
CBR of DSW can be characterised as a pre-set small-scale centre-based educational rehabilitation extension programme at community level for children with learning difficulties: its management can be characterised as a top-down administration-led management.
Participation of local disabled people was limited both in terms of contributors and beneficiaries. Four reasons can be raised. Firstly, DSW did not view disabled people as contributors but as recipients. Secondly, DSW mainly targeted children with learning difficulties, hence it also emphasised their views of disabled people as those in need of protection by others, rather than as mature and self-determined individuals. The third is the assumption of DSW that parents share interests with disabled family members. Finkelstein and Ossie (1996) and Hubbard (1997) clarify that parents and disabled children do not share the same interests, but often parents can be an obstacle to disabled peoples' independence (7). The final reason may be the limitation of participation of organisations of disabled people at both the macro and micro level of planning and implementation. DSW organised a CBR planning workshop and convention in 1989 and 1995, but no disabled peoples' organisation was involved. This is because CBR of DSW is seen by the community, disabled people, and even by the CBR implementors themselves, as a specific educational programme solely for children with learning difficulties (8) (Nakazawa, 1996: 202-3). Hence, disabled peoples' organisations could not see the relevance of their co-operation with CBR of DSW.
CBR of DSW strongly inherited the characteristics of institution-based rehabilitation, which sees disabled people as those in need of help which is provided by other people, and planned and developed only by rehabilitation and administration professionals without involving disabled people. Finkelstein (1998) says many so-called CBR programmes rather re-adopt the knowledge and skills from institution-based services, which again become prevalent in the community and wipe out community-based and community-developed knowledge and skills to deal with disablements in wider and more life-centred ways.
CBR of DSW has gradually intensified the characteristics of a specialised programme providing special education for children with learning difficulties, rather than being comprehensive for all disabled people. The continued and increasing absence of involvement by disabled adults leads to a self-perpetuating downward spiral of non-participation by disabled people.
Notes: Chapter Three
1. The poverty line is defined differently between Peninsular/West Malaysia and East Malaysia (Sabah and Sarawak) according to the difference of the cost of living. Peninsular: RM370 per household (5.1-5.4 person) per month; Sabah: RM544; and Sarawak: RM 452.
2. In 1911 Hope for Handicapped was established by the Sisters of the Infant Jesus. In 1926 the St. Nicholas home was established by Anglican medical missionaries. The Department of Social Welfare set up Jubilee Home in 1953, as a residential centre catering for not only the severely mentally handicapped but also the physically handicapped and multiple handicapped children. In the same year a 'Central Welfare Council' was established to foster voluntary efforts on the part of local welfare and charitable organisations and to achieve some co-ordination of effort. Many NGOs were established; Malaysian Association for the Blind in 1951, Spastic Centre in 1960, National Society for the Deaf in 1961, Cheshire Home in 1964, and Bethany Home for Epileptic Children in 1966 (Jayasooria, and Ooi, 1994: 97-9).
3. The Malaysian Confederation of the Disabled (MCD) was established in 1985, which is a body comprising organisations of the disabled, namely the Society of the Blind in Malaysia (SBM) (which was established in the 1960s), Society of the Orthopedically Disabled (POCAM) (1976), Society of Chinese Disabled Persons, Malaysia (SCDPM) (1977), and Society of the Hearing Impaired, Malaysia (SHIMA) (1987), and it is a member of Disabled Peoples' International (DPI) (Jayasooria, and Ooi, 1994: 98-9)
4. For instance, Employees Social Security Act 1967, Workmen's Compensation Act 1952, and the uniform building bylaws which include guidelines on accessibility of disabled persons (Nakazawa 1995: 8).
5. Out-patient charge is RM 1 (Price of rice is RM 0.7 per kilo gram). The ratio of village clinic where birth attendants are working is 1 clinic/4 865 population. There are three academies of physiotherapists: one government funded which was established in 1974; and two privately funded, which were established in the 1990s (Shuto, 1995).
6. Well known CBR programmes of NGOs are: CBR of Malaysian Association for the Blind which started in 1984 for 40 blind people in Penang with 8 volunteers; CBR of Bethany Home and Yayasan Sultan Idris Shah [Sultan Idris Shah Foundation] at Perak; and Program Desa at Saba Bernam (Nakanishi, 1996a: 217; Malaysian Care, 1996).
7. Finkelstein and Stuart (1996) says that parents and professionals unthinkingly protect disabled children from risk taking and personal responsibility, then as a consequence, disabled children can grow into adulthood poorly equipped with the social skills necessary to form meaningful relationships. Hubbard (1997) says that a mother can abort a baby screened to be impaired. This may be one of the crucial examples of conflict of interest between parents and disabled family members who may want to be born.
8. Nakazawa (1996) reports interesting views of community members and CBR, especially CBR workers from the results of his survey: they see their CBR programme of DSW as 'PDK' (PDK is a contracted form of Pemulihan Dalam Komuniti, i.e. CBR in Malaysian) and distinguish it from other CBR programmes of NGOs. They see 'PDK' as a small-scale centre-based programme for children with learning difficulties, and CBR as something else.
4. CHAPTER FOUR: INDONESIA - CASE STUDY
The Republic of Indonesia is the largest archipelago country consisting of 13 667 islands along the equator. The population is 194 million, and consists of more than 300 ethnic groups, 70 per cent of whom are living in rural areas. Islam is the major religion: 87 per cent of the population are Muslims (Appendix: A) (Japanese Embassy in Indonesia: 1995: 1-4).
Indonesia experienced repressive aspects in personal freedom while Soeharso was president for 30 years (Ministry of Social Affairs, 1993: 46). The majority of the Indonesian labour force is not wealthy, and the recent economic crisis has affected the poorer people most. The gross national product per capita is $740 US per annum, and 49.9 per cent of the total labour force are employed in agriculture (UNICEF 1997: 68).
4.2. Disabled People
From the census in 1990, 3.11 per cent of the total population, or 5.5 million people are estimated to be disabled people, and categorised according to five types of impairments (Table 4.1). A new Law Concerning Disabled Persons was promulgated in 1997. In the period of REPELITA [Five Year Development Plan]-I to V (1969-1991), only 20 per cent of total disabled people received services mainly at institutions. Most of them were urban residents, and disabled people in rural areas were excluded from the benefits (Ministry of Social Affairs, 1993: 9).
The history of rehabilitation of the disabled in Indonesia officially started in 1946 after the Second World War. The first national rehabilitation centre was established at Solo in 1951 by the Department of Social Affairs (DSA). The disabled peoples' movement was accelerated by the International Year of Disabled Persons (1981), and the national organisation of the disabled, Indonesia Disabled Peoples' Association, was established in 1987.
DSA is responsible for the welfare of disabled people, and it has adopted two rehabilitation systems: the institutional system, and the non-institutional system. The institutional system of DSA consists of three levels of centres: Pusat [two rehabilitation centres at national level], Panti [21 centres at provincial level], and Sasana [13 centres at district level]; but more than half of them are on the Java islands, and focus on vocational training (Table 4.2). The non-institutional system consists of several programmes (Table 4.3), and this entire non-institutional system and referral system to institutions is referred to CBR of DSA (1) (Appendix: B). This CBR has been developed under the consultation of ILO, and focuses on vocational interventions as rehabilitation.
In the health sphere, two major strategies have been implemented for rural areas: Puskesmas [community health centres] and its referral system; and Posyandu [health posts for maternal and child health] (2). There were approximately 2 200 physiotherapists, but only six occupational therapists in 1997 (3). Special education was started in 1965 by the Department of Education and Culture, and there were 819 special schools under both government and private control in 1993 (4) (Nakanishi, 1996a: 41). Persatuan Penyandang Cacat Indonesia [Association of Indonesian Disabled] was established in 1992 as a co-ordinating body of NGOs (5).
4.4. CBR Development and Training Centre
Although DSA and many NGOs have implemented CBR programmes in Indonesia, CBR Development and Training Centre (CBRDTC) initiated CBR prior to them in 1978, and has developed some unique approaches based on a social development concept including participatory rural appraisal (PRA) (6).
CBRDTC is an NGO currently with two aims: research and resource development of CBR; and field project implementation. As field projects, CBRDTC implements CBR in Central Java, North Sulawesi, East Timur, and in Bangladesh. CBRDTC also takes a co-ordinating role of the CBR task force of the United Nations Economic and Social Commission of Asia and the Pacific (ESCAP). The staff consists of 38 including 11 facilitators, two medical doctors, a physiotherapist, administrative staff, and several foreign volunteers. Their work is funded on an individual basis by a number of different international donor organisations while funds for core operations are raised locally.
4.5. CBR Project of CBRDTC
CBRDTC planned a three-year CBR project which focuses on community development aspects of CBR in Central Java. The concept and techniques of PRA were adopted throughout the project, especially at the entry into the community and initial information gathering and awareness raising stages. This project was started in 1993 and funded by Nippon foundation.
The purposes of this project were: to implement CBR as a community development programme in order to deal with disablements as a whole; to empower the community including disabled people; and to sustain programmes of CBR. CBRDTC selected 18 villages in five districts, and aimed to establish CBR programmes as the communities' own programmes within the project period. A facilitator located in every three villages, was responsible for establishing a CBR village committee in each village, and co-operated with them to develop action plans. Specifically, awareness raising and community organisation by implementing PRA were the first and the most important roles of facilitators at the implementation stage. Although the processes varied from village to village, they could be generalised and divided into five stages as shown in Table 4.4. The role of the CBR committees was to manage the CBR programmes with adequate support of CBRDTC and facilitators; hence the role of CBRDTC was to provide training and information, and to support the widening of the network of communities, rather than direct service delivery to disabled people.
Although CBRDTC had set five aspects of activities and offered several pre-set training sessions and workshops for 18 CBR village committees and volunteers in this project, the priorities of implementation and the specific contents of the activities were planned by the CBR village committees with the support of the facilitators (Table 4.5). Hence each village had its own annual plan and timetable. For instance, villages in Boyolali district focused on integrated education, but villages in Klaten district took income generation programmes as the primary programmes.
4.6. Participation of Disabled People
One of the key aims of this project was to encourage participation of disabled people as contributors and decision makers, so these aims were given attention at every stage of CBR implementation.
All registered disabled people were visited by facilitators or members of a CBR village committee. Then as beneficiaries, 39.1 per cent of them received specific services in three major categories of activity, and more people received other services, such as counselling (Appendix: C). However, if compared to the estimated number of disabled people, this ratio become rather low: 7.3 per cent by the end of 1996.
As contributors and decision makers, disabled people participated in many aspects of CBR. CBRDTC tried to accommodate disabled people in CBR village committees, and nine of the 18 villages succeeded in this (Table 4.6). One of the six CBR facilitators in the villages was a person with physical impairment, and one of the twelve local volunteers for rehabilitation services was also a person with physical impairment. In Banyumas, a disabled person participated in the Independence Day parade, and she started to establish a self-help group in her village.
Several organisations of disabled people participated in the development of CBR in Central Java through the participation of several workshops. However, their involvement at local level was limited. Although the participation of disabled people was limited in terms of the number of people, several initiative movements could be seen in this programme. As a specific example, it could be seen in the participation of disabled people in the process of PRA and the development of appropriate technology.
Notes: Chapter Four
1. URK: Mobile Rehabilitation Unit (MRU)
MRU is an outreach programme which consists of multi disciplinary professionals including medical, educational, and vocational. A MRU visits a district and organises the following activities for five days: early detection, registration, assessment, medical examination and treatment, psychological test, consultation, donation of orthotics and prosthetics , and referral. There are a total of 44 MRU units in Indonesia, and every province has at least one, but they are mainly in Java, Sumatra, and Bali.
KUP: Productive Effort Group of disabled persons
KUP is a group of disabled people with five to ten persons per group. A KUP encourages disabled people to open a shop or workshop and start a small business. There were 4 440 KUPs in 1992. Disabled people in this programme can receive credit at a low interest rate from the Bank Rakyat Indonesia (BRI) under the scheme of 'Credit for Permanent Working Capital (KMKP)' in 12 provinces.
LBK: Workshop of disabled persons at the sub-district level
LBK is a small workshop at sub-district level where groups of persons with any type of impairments are trained in certain skills. There were 281 LBKs in 1992,
PBK: PBK is an on-the-job training scheme.
LIPOSOS: Re-functionalisation and re-settlement villages for the disabled.
This is a re-settlement programme mainly for ex-leprosy sufferers. There were 18 units for 3 384 people in 1992.
(JICA, 1993; Department of information, 1995)
2. PUSKESMAS AND REFERRAL SYSTEM:
The Puskesmas (Community Health Centre) scheme, which started in 1972, is the primary source of medical care and public education and information about health and nutrition. Ideally, at least a general practitioner and a dentist work on a permanent basis. Each Puskesmas would have 2 to 3 sub-Puskesmas, which are located within a village, with mid-wives only. Hospitals are divided into four categories from A (above 1 000 beds) to D (between 25 to 200 beds). The patients would be referred from Puskesmas to these higher ranked hospitals according to their condition. There is no medical insurance except the Askes for government officials and soldiers. Although Dana sehat, a co-operation scheme for health provision, has been introduced in rural areas, it has not become popular yet. The charges for general treatments are 350-500 Rp at Puskesmas, 500 Rp (general practitioner) and 3 500 Rp (specialists) at C class hospitals. (One kilo gram of rice costs 700 Rp at market). The nearest Puskesmas is about 5km from the village. Although there is a scheme to subsidise the charges for poor patients, some expensive treatments or operations are not usually covered by this scheme. Not many people actually utilise Puskesmas or hospitals, since they must consider the distance and cost involved, and prefer to see traditional healers in their village (Berman et al., 1994: 212). The weaker members of the village, especially aged and disabled people, have less opportunity to gain access to proper medical services.
POSYANDU AND 'GOBI':
Posyandu (Integrated Service Delivery and Nutrition Post) is a peripheral activity of the health strategy of Indonesia in implementing SPHC and GOBI (Growth monitoring, Oral Rehydration Therapy, Breast feeding, and Immunisation). The development of Posyandu has accelerated since the Ministry of Health placed the issue of Child Survival at the top of the PHC agenda in the Fourth Five Year Development Plan (1984-89) (Heering, 1993: 3). Posyandu has five key health programmes for mothers and children: weighing, immunisation, control of diarrhoea, maternal and child health, and family planning (Heering, 1993: 16-20). Posyandu is held once a month and managed by the nurses of Puskesmas and volunteers of PKK (village women's association). Vitamin A is supplemented twice a year. In Genengadal, 63 per cent of females aged between 15 to 45 (885 persons out of 1 400) use contraceptives.
3. There are eight academies and a faculty of physiotherapists, and 400 new physiotherapists graduate annually. Most academies were established in the late 1980s. An Academy of occupational therapy, which accepts 40 students annually, was established in 1994. Most of them are working under the government hospitals at A to C class or private hospitals in major cities. There are 120 prosthesists and orthosists. Every B class hospital has a section of orthotics and prosthesis. There is only one rehabilitation hospital in Solo which was separated from the total rehabilitation centre in late 1970s. There are 200 beds and 22 physiotherapists, an occupational therapist, and 27 prosthesists and orthosists.
4. The Department of Education and Culture divides special schools into four types: Sekolah Luar Biasa [SLB: Special education school]-A(visually impaired), B(hearing impaired), C (mentally retarded), and D (physically impaired). Among them, 210 are integrated schools (Nakanishi, 1996a: 41).
5. Member organisations are: Federation of the Blind, Federation of the Physically Handicapped, Association of the Hearing Impaired, Federation of the Mentally Handicapped, and so on (Nakanishi, 1996a: 44).
6. CBRDTC is a part of Yayasan Pembinaan Anak Cacat [YPAC: the Indonesian Society for the Care of Disabled Children]. The mission statement of CBRDTC is as follows:
Improving the quality of life of people with disabilities in their own families, communities, and countries by developing, implementing and sharing knowledge about community action programmes that focus on disability issues (CBRDTC, 1995: 1).
5. CHAPTER FIVE: PARTICIPATORY RURAL APPRAISAL (PRA) AND APPROPRIATE TECHNOLOGY (AT): LESSONS LEARNED FROM PARTICIPATION IN INDONESIA
5.1. Participatory Rural Appraisal (PRA)
Participatory Rural Appraisal (PRA) was implemented as an initial programme of CBR implementation. CBRDTC had three major purposes to implement PRA: to build ownership of the programme among villagers; to raise awareness on disablement; and appraisal of community. Facilitators of PRA had a nine-week training course on CBR including PRA. PRA took three evening sessions at each village, consisting of three activities: mapping, venn diagram making, and matrix scoring and ranking.
This concerned the mapping of disabled persons and resource location. The purposes of this activity were to collect data on where the disabled people lived and the availability of resources; and let villagers find the multi-perspective needs of disabled people and to realise how many resources they have in their community. In other words, to support people to realise their potential to deal with disablement in their own community.
First of all, they discussed disablement and the needs of disabled persons. Then, villagers drew a map of their village and identified who and where disabled people lived. Next, they located on it local resources for the needs of disabled people. Through the process of mapping, discussion on disablement was facilitated.
Venn Diagram Making
This was diagram making about the relationship between disabled people and resources (Figure 5.1; 5.2). The purposes of these activities were to identify the perceptions of disabled people, and to make the non-disabled people reflect on their own perception on disabled people and their situations. Participants were divided into two groups: disabled people and their families, and non-disabled people. Each group made a diagram.
Firstly, the villagers made a list of all social resources. Secondly, they selected circles of varying sizes of paper to represent the relative importance of each resource. Finally, these circles were placed on a poster at varying distances from the centre which represents the disabled person. The distance from the centre was representative of how close, in terms of understanding and assistance, they were to disabled persons. At the end, these two diagrams were compared and discussed.
Matrix Scoring and Ranking
This was a ranking about the needs of disabled people. Participants were again divided into two groups, disabled and non-disabled; and the outcomes were compared. The purpose of this activity was to identify the priority of needs and their interests. First of all, the problems of disabled people were listed. Secondly, the criteria were decided; then problems were ranked and compared.
5.2. Review of PRA from the Perspective of Participation
Results of PRA should be evaluated by the results of the whole process of CBR. However, to clarify the direct outcomes of specific intervention for participation, primary outcomes of each three day session were analysed, through reviewing the outcomes and participation of each activity. The number of participants in this PRA were small compared to the total population; about forty to sixty participants from a total population of between three and six thousand. The numbers of disabled people were smaller: numerical data was not available but from the interview of facilitators, it was less than ten people at each village.
Labelling Disabled People
Many more disabled people were identified by mapping compared to the number of government registration, 0.5-1 per cent of the total population. However, it was still far less than the estimated ratio of disabled persons, 3.11 per cent of the population. In addition, not as many people with learning difficulties as estimated were identified (Appendix: D).
However, it might be dangerous and lead to further discrimination to find disabled persons and locate them by mapping, without changing the negative perception toward disablement and disabled persons among villagers. To be a disabled person does not mean just to be a physically or mentally impaired but to be disadvantaged and marginalised in society. In Central Java, a lot of beliefs and superstitions, which usually cause negative attitudes to disablement and disabled persons, still exist. Helander (1993a: 13-5) says disablement is not a physical or mental condition but to be labelled by the society and marginalised by the community. This mapping might emphasise the labelling of disabled persons. Mapping may be suitable for finding out things. However, we must be careful when using this to identify people who are facing discrimination in society, such as disabled persons or AIDS/HIV patients. This mapping might become an obstacle to the participation of disabled people by identifying them as being disabled, if this negative attitude is not dealt with in CBR.
Disabled People are not Identified as Contributors
Mapping was helpful to find out resources; but was likely to be biased towards tangible resources. Participants tended to locate 'institutions', whereas intangible resources, such as relationships among relatives, knowledge, and reciprocity are the important resources in rural development programmes (Chambers and Conway, 1992: 10-2). This activity may increase the tendency of people to consider resources as only tangible. Hence, peoples' skills and knowledge are not identified as resources, and more importantly, this may increase the tendency to allocate roles to people: disabled people as receivers, and others as contributors.
This tendency can be seen in the process of matrix scoring and ranking, too. They did not analyse disablements as social issues, but rather as individual issues. Then priorities which they raised were more on service delivery to individuals, rather than social changes including attitudinal changes. The outcomes of matrix scoring and ranking depended on the ability of the participants to imagine what could be done by the project and how; and what criteria were used. Participants could not develop alternative views on disablements, although they had two PRA evening sessions prior to this activity. Hence, they could rank problems only based on their conventional understanding of disablements, i.e. as individual tragedy. This ranking may not encourage further participation of disabled people in the process of CBR: it could reinforce the passive role of disabled people as service receivers, not contributors.
Perception of Disabled People Becomes Equal and Clear
Although powerful people tend to dominate discussion even in the process of PRA, by dividing participants into two groups in the process of venn diagram making: disabled and non-disabled people, and making them present only one opinion each, i.e. a diagram, the voices of disabled people became more equal to those of non-disabled people.
Figure 5.1 was made by disabled people and their families in Smangka village. It shows that only the family is close to the disabled person and important, and others are seen as relatively small and distant. The primary health care programme and the village health post are the smallest circles and placed far from the centre. The traditional healer is bigger and closer than these two resources.
In contrast to this, Figure 5.2 was developed by non-disabled people; and is very different from Figure 5.1. Almost all the resources are placed at the centre, and three resources; the village office, village people and the women's volunteer organisation, are huge.
Their views or perceptions of their own societies were different. If disabled people were included as just one of many people, their voices may not be raised clearly like this, and their perceptions may not be fed back to the process of CBR.
PRA may not Deal with Conflict
There was a good reversal of learning between the implementor and disabled people through Venn diagram making. At the beginning, CBRDTC ignored the inclusion of traditional healers in CBR programmes. However from this outcome and later planning of CBR village committees, CBRDTC decided to included them in the process of CBR as a resource and target of training. As a result, it contributed to the whole process of CBR, since the traditional healer was the first choice of villagers to have as a consultant.
At the same time, CBRDTC expected these differences of perception to stimulate lateral learning, especially among non-disabled people. However, they started to defend their perception and show negative attitudes toward the perception of disabled people. Increasing participation by clarifying and raising the voice of the weak, i.e. disabled people, may create conflict. Although PRA may create opportunities for the participation of disabled people, it may not deal with the conflicts between disabled people and non-disabled people which occurred in this process.
5.3. Development of Appropriate Technology
The participation of disabled people in the process of development of appropriate technologies was also a crucial aspect of participation of disabled people. Some private companies produce standard wheelchairs which are available at pharmacies in cities in Indonesia, but they are too expensive for the people in rural areas. CBRDTC has been involved in two appropriate technology (AT) wheelchair intervention programmes in CBR; the Loka Bina Karya (LBK) and MOTIVATION (1).
DSA runs a national institute of vocational rehabilitation and offers a course of wheelchair making. Some of the graduates of this course, physically impaired persons but non-wheelchair users, organise the LBK and produce wheelchairs in Solo. This wheelchair is subsidised by DSA and distributed disabled people through mainly by Mobile Rehabilitation Unit (MRU).
MOTIVATION is a British NGO. It aims to develop appropriate wheelchairs and production technologies; and to train local people with physical impairments who use wheelchairs to be producers. The wheelchair was originally developed by two British men, one of whom was a quadriplegic wheelchair-user; and was first implemented in Bangladesh in 1991, then in Indonesia (Harris 1997). CBRDTC was involved as a contributor of this wheelchair into rural areas through the CBR programmes in Central Java Province.
5.4. Comparison of LBK and MOTIVATION
Both LBK and MOTIVATION have unique characteristics. These were compared and discussed by focusing on participation of disabled people and development of AT.
Both LBK and MOTIVATION used relatively simple technologies, locally available materials and resources which were used by other craftsmen, such as Becha (Rickshaw) makers in Java. Both used a three-wheeled and unfoldable design, although the standard wheelchair was four-wheeled and foldable (Appendix: E). A three-wheeler has many advantages for use in rural areas. The production process is simpler as is the assembly process; it is more stable than the four-wheeler on rough surfaces; it is more reliable as it uses fewer parts, so it is cheaper to make. The disadvantages are a long axle length and the necessity for more space to turn around. The unfoldable design is an advantage in terms of its simple structure, durability, and lightness. Foldability is an advantage for car users, but a disadvantage in terms of durability, and durability is more important than portability for people in rural areas.
However, there was a significant difference between the two designs. This was the position of the wheels. The design of the LBK with big traction wheels in front and a caster at the back, was originally developed as a wheelchair to be pushed by someone. To be operated by the user himself, there were two defects. First, the user could not climb the curb or a step by himself with this wheelchair. To climb the curb, as an operation, the user must float the front caster, but it was difficult with this wheelchair. Secondly, the centre of gravity was not on the traction wheel, hence it lost traction on a rough surface. On the other hand, MOTIVATION takes the same three-wheeled wheelchair concept taking into account these operations, and so placed a caster in front (2).
The other difference is the development of a cushion. The cushion is an essential part of any wheelchair: without a cushion, for any spinal-injured patient with sensory loss, using a wheelchair creates a risk of the development of pressure sores and subsequent infection. MOTIVATION developed a cushion using the aerated latex foam used in Indonesia to replace torn motorcycle seats. This $5 cushion proved, during pressure relief testing at the Spinal Injuries Unit (Stanmore), to be as efficient as a $600 American cushion (Harris, 1997: 11).
Two reasons may be listed for these differences. The producers of MOTIVATION were wheelchair users; and have learned from their experiences. On the other hand, the LBK wheelchair was not produced by wheelchair users, although they are physically impaired persons. Another reason might be the existence of the intervention of advanced technology or its information at MOTIVATION.
In addition to these, MOTIVATION makes greater efforts to ensure their wheelchair is an appropriate product for users. The important characteristics of MOTIVATION compared to LBK was that they offer sufficient training for wheelchair users, such as climbing curbs and transfer from wheelchair to ground, which were crucial to users to ensure the appropriate use of the wheelchair. This training was initially offered by physiotherapists, but was later taken over by trained local wheelchair users. This training tends to be ignored in the provision of aid distribution, although it is important. In the case of MRU, basic training was provided, but it was only half an hour and tended to be ritual.
Three lessons can be learned from a study of PRA: the importance of seeing who actually participates; the need to be aware of the dangers of co-option, rather than facilitation; and the understanding that PRA is not a panacea of participation.
First, the participation of disabled persons in the process of PRA was limited not only in terms of number but also in level and types of impairments. Only mildly impaired persons could participate and the weakest people, who were severely or intellectually impaired, could not participate. This also implies the need to be aware of who can advocate or represent whom, e.g. if a rich male with mild physical impairments can represent a poor female with severe multiple impairments. It tells us to be aware of who actually participates.
Second, we must be aware that CBRDTC tried to use PRA as part of an awareness raising process, but it meant changing people's perceptions and negative attitudes toward disabled people and their tendencies to take an institution-based approach. This intention could lead to PRA becoming a process of co-option to the particular perception on disablements which CBRDTC has, even though it may be the 'right' perception. CBRDTC must be aware that PRA can be utilised to co-opt people to guide CBRDTC's objectives, not a facilitation of people's problem solving (Cornwall and Fleming, 1995).
Finally, there is one further point that we must not ignore. Participation may not be free from the context of local politics and culture (Richards, 1995: 15). In Central Java, it is considered to be very rude to contradict the opinion of anyone of a higher rank. In addition, government officials must be present and they tend to dominant discussion. Often CBR implementers assume CBR serves the common good, but in fact, there is a conflict among the community in the process CBR, and PRA inevitably causes conflict among them. However, PRA does not guarantee dealing with these conflicts and changing relations (Scoones, 1995: 17; Guijit, and Cornwall, 1995: 2; Backhaus and Wagachchi, 1995: 63). To realise the participation of disabled people in and by PRA, not only techniques but also other elements, such as attitudes and the long term personal commitment of implementers, are crucial.
Two lessons can be learned from the study of participation of disabled people in the development of AT: the heterogeneity of disabled people; and the importance of information.
Firstly, it cannot be denied that both LBK and MOTIVATION have contributed to the development of more appropriate wheelchairs for rural disabled people. But the wheelchair of LBK was less effective in terms of function than MOTIVATION's, and this difference gave us an insight on the participation of disabled people. In both organisations, disabled people participated, but the difference was whether they were users of the products which they developed. The different results raised our awareness of the importance of considering the heterogeneity of 'disabled people', although they are often categorised in a single category. This particular example of wheelchair development clarified the heterogeneity of disabled people in terms of people's impairments, but it could be applied into other criteria, such as gender, economic status, and ethnicity.
The other cause of the differences between the wheelchairs of LBK and MOTIVATION may be the availability of information. MOTIVATION might have better access to information on advanced technologies compared to LBK, hence information was utilised by disabled people to develop better products. This implies the effective way of participation of rehabilitation professionals to promote and encourage not just participation, but effective participation of disabled people.
Notes: Chapter Five
1. AT is often characterised as: labour-intensive; small scale; having a preference for rural over urban locations; and using local raw materials, skills and knowledge.@However, a more important but often unfocused aspect of AT is the appropriateness of its production (Stewart, 1987: 289). Although the reduction of cost, using local materials and technologies are important aspects of AT, these would be pointless if its products did not meet the needs of the users of production, in terms of function, quality, affordability, and their life style or cultural settings.
For instance, in rural areas in Indonesia, the wheelchair might not be an appropriate product. This is because their life style involves sitting on the ground, and not on a chair. Sitting on a chair would be embarrassing and impractical in their daily lives. In this situation, a low-level trolley may be more appropriate than any type of wheelchair even if it is low cost (Platt, 1989: 3; Smith, 1989: 25). Therefore, AT should be discussed not only in the light of the above characteristics, but also in terms of the production of appropriate products to satisfy the needs of the poor majority, and this need can be satisfied only when disabled people themselves participate and feed back their experiences into its development process (Stewart, 1990: xii).
2. Werner (1998: 221-6) also criticises this point. He says this traveller type wheelchair, front-wheel-drive, may work fairly well on a hard level surface, i.e. inside an institution. But on rough terrain, they are likely to further disable the user for two reasons: poor traction because of the position of centre of gravity; and difficulty to do caster-lift ("wheelies") which is the most basic and important skill to climb the curbs (there may not be so many in villages) and out of gaps or ruts in a rough surface in which the wheelchair may get stuck.
6. CHAPTER SIX: CONCLUSION
6.1. Importance of Participation of Disabled People
The Regional Inter-agency Committee for Asia and the Pacific (1997) which consists of 10 UN agencies and 16 NGOs including DPI, states the importance of participation of disabled people at all levels and stages, but especially in the decision making process. Specifically, their participation as a role model is emphasised to change the negative images of disabled people which restrict the participation of disabled people as contributors, and exclude them from decision making processes.
Finkelstein (1998) discusses the importance of the participation of disabled people to develop an alternative culture toward the development of a better society. He emphasises that the 'aspiration' of disabled people is the fundamental basis of actions to deal with disablements, not the 'needs' which are assessed by rehabilitation professionals. The aspirations cannot be assessed by professionals, but only disabled people themselves can develop their own aspirations. Hence without the participation of disabled people, appropriate actions would not be developed. He also clarifies the two different approaches of CBR: re-adaptation and modification of institutional services into the community; and development based on what has been done within the community, and he supports the latter as a more effective approach to dealing with disablement as a whole. The participation of disabled people is the key to have the latter characteristics in CBR. CBR in Malaysia, which aims to have more specialised services, has had more of the former characteristics, and it would be more comprehensive and serve all disabled people, if disabled people participated in the decision making process.
Werner (1994) discusses the importance of the participation of disabled people from a more practical point of view, by rating 'being a disabled person' as a positive qualification to be a contributor to CBR, not as a negative factor. He raises five reasons for it. By being disabled, they can: 1) be more sensitive to the needs and feelings of other disabled people, hence have a stronger commitment; 2) give disabled people the evaluating role of their needs; 3) meet the real needs of disabled people; and the most importantly, 4) become a role model for society, hence CBR becomes an enablement or empowerment process; thus 5) it provides a liberating point of view to the disabled people, and it changes rehabilitation professionals whose attitudes are the hardest to change. The above reasons prove the fact that in the practice of CBR of CBRDTC, disabled facilitators and volunteers were the ones who worked the most eagerly and effectively.
However, whereas the importance of the participation of disabled people is accepted in terms of the philosophy of CBR, it is the most difficult aspect to implement in CBR, and there are several obstacles to realise it. For instance in Indonesia, disabled people who participate as contributors were mainly the people with mild or moderate physical impairments, and others were still excluded.
6.2. Obstacles to Participation of Disabled People in CBR
Haque (cited in Nakanishi and Kuno, 1997: 110-3) summarises several factors of obstacles from his own experience as a disabled person to implement CBR in Bangladesh: poor accessibility: insufficiency of training on disability; conventional circumstances to prevent participation in general; lack of consciousness of collective action building; and the lack of management capacity among disabled people.
Although these five factors are appropriate to explain the causes of the restrictions of participation of disabled people in general, then do not appear to explain the difference of participation between CBR in Malaysia and Indonesia. In a comparison of these two CBR programmes, two factors can be identified as primary causes: the goal setting of programmes, and the existence of facilitators in the communities. Whereas CBRDTC set the participation of disabled people as a goal of CBR in their project statement, Department of Social Welfare (DSW) did not include it in their statements, hence no disabled people participated as contributors or decision makers in the surveyed programmes. CBRDTC gave CBR workers the responsibility for facilitation in the villages, but DSW allocated CBR workers the role of special education teachers for disabled children, and CBR committees also did not take the role of facilitation of their communities.
However, the fundamental cause of the restriction of the participation of disabled people seems to be the particular interpretation of disablements by CBR implementers who are likely to be rehabilitation professionals or bureaucrats. Many disabled activists and CBR initiators (Werner, 1992; Mendis, 1993; De Jong, 1982; Oliver, 1994; and Philpott, 1993) recognise that particular interpretations by rehabilitation professionals are the biggest obstacle for the participation of disabled people.
6.3. The Major Obstacle of Participation: Rehabilitation Professional
In order to promote the participation of disabled people in the process of rehabilitation, CBR challenges the authoritarianism and discipline or discourse of rehabilitation professionals. This challenge undermines the legitimacy and authority of rehabilitation professionals to intervene into everyday lives of disabled people, and their legitimate use of resources. Hence the CBR programmes setting this challenge at the heart of the programme, may face observable or latent resistance from rehabilitation professionals.
The purpose of CBR is to democratise the rehabilitation process, and to liberate knowledge, skills, and rights of rehabilitation to the people, which have previously been exclusively possessed only by rehabilitation professionals (Helander et al., 1989: 16; Mendis 1993a). It is necessary for 'experts' to turn into 'non-experts' or 'collaborators', if one wants to deal with disablements as social issues (Finkelstein: 1998).
In most developing countries, however, rehabilitation professionals, such as physiotherapists, are struggling to establish their social status to be recognised as a 'professional' in medical circles. The President of the Malaysian Physiotherapy Association explained that the most important role of the association is to raise the social recognition and status of physiotherapists in Malaysia, hence it is important to: prevent physiotherapy from being seen as something which can be done by anyone; and to stop non-physiotherapists performing 'physiotherapy'. It is important to restrict the use of the knowledge and skills of physiotherapy to maintain their 'profession' and 'authority'. Hence the above suggestions are unacceptable to them, or can be allowed only if under their control: for instance, to include CBR within a medical hierarchy as a particular programme 'at community level', not as a community-based programme which would challenge their authority. This is not merely a philosophical matter, but also an economic matter. In Indonesia, many government employed physiotherapists practice privately in their spare time because of the low wages. 'Physiotherapy' is their commodity to sell, hence they co-operate with CBR as long as it does not affect their authority and income.
Discipline / Paradigm
CBR needs to see disablements not only in medical terms. Even WHO requires rehabilitation professionals to familiarise themselves with the socio-cultural ethos; to see disablements beyond the confines of their professions, i.e. medical; and to realise alternative solutions (Mendis, 1993a).
Their discipline tends to project disabled people as 'patients' in need of a 'cure' to be normalised, so it legitimise the interventions of rehabilitation professionals into disabled peoples' lives as primary decision makers. In addition to this, the medical intervention is often seen as the sole intervention to 'help' the disabled person. As long as disablements are seen in this paradigm, people are not encouraged to deal with disablements as social issues. In other words, their discipline, i.e. medical paradigm, may not enable them to deal with disablements as a social issue. Therefore, if the medical paradigm is rejected as inappropriate to deal with disablements, their entire knowledge, skills, profession, authority, and their legitimate use of resources become problematic. Therefore, they are likely to be obstacles of CBR, i.e. to a paradigm shift of disablements and rehabilitation.
6.4. Implication for the Future of CBR: Strategies to Promote Participation of Disabled People
Werner (1994) summarises the key factors involved in the promotion of the participation of disabled people in CBR: 1) Organisation of disabled people; 2) Redefinition of goals of CBR from recovery from physical malfunction to empowerment; 3) Restructuring the rehabilitation service pyramid from top-down to bottom-up approach, which includes changing the role of CBR workers and rehabilitation professionals from supervisors to facilitators, and from top of hierarchy to tap of information respectively; 4) Rating disablements as a positive key qualification to being a contributor; 5) Encouraging information exchange among people; and 6) Decentralising rehabilitation services and disabled peoples' organisations.
The above six factors are the crucial factors to promote the participation of disabled people in CBR, and two points should be emphasised as the most important suggestions for future practices: shifting the paradigm or discourse on disablements and rehabilitation in the philosophy of CBR; and a combination of CBR and disabled people's movements in practice.
Shifting Paradigm / Discourse
The catalytic and facilitative participation of implementors has been developed as an ideal participation to counter the conventional rehabilitation approach in which rehabilitation professionals merely focused on service delivery at institutions (Philpott, 1993; Mendis, 1993a). However, we must be aware that the facilitation process is likely to be a co-option to the goals and discourses of implementers, rather than to be a 'real' facilitation. Hence, if the goals of CBR are based on the medical paradigm and do not encourage the liberation of the rehabilitation process, facilitation may work to legitimise the prevalence of medical discourse, hence the exclusive possession of rights of rehabilitation professionals to control the rehabilitation process and to intervene in disabled peoples' lives, in the name of facilitation.
Therefore, although Philpott (1993) acknowledges the possibilities of occupational therapists being catalysts or agents of change, she also emphasises the several pre-requisitions for them to be catalysts: to look at disablements beyond the medical paradigm; to adopt an empowerment approach and to be collaborators with disabled people; and to learn from disabled people. This implies that it is a mistake and danger to understand that rehabilitation professionals can easily be catalysts and have advantages; rather, it tells us their difficulties in becoming catalysts, since they need to break their fundamental paradigm in which they are based.
Furthermore, Mendis (1993c) and Nakanishi (1996b) recognise this danger and suggest the restriction of their participation only in the referral system and training of CBR workers, in order to prevent interventions of rehabilitation professionals into local levels, as they recognise the likelihood of rehabilitation professionals becoming controllers of CBR at the local level.
Similarly, Werner (1993b) requests the rehabilitation professional to be a tap of information, and a mid-level CBR worker, a position which he suggests disabled people are the most qualified to fill, to be a catalyst. In other words, rehabilitation professionals are less qualified to be catalysts than disabled people, but should contribute as providers of knowledge and skills.
De Jong (1982) pays attention to the prevalence of medical discourse among ordinary people which raises negative images of disabled people, and suggests rehabilitation professionals play a strategic role, i.e. not technical assistance, but rather legitimising the positive role of disabled people. Then it would serve to change the discourse of the rest of society and recognise the worth of the participation of disabled people. In other words, rehabilitation professionals themselves need to accept an alternative discourse of disablement. Tjandrakusuma (1997) also mentions that the most important way of participation of rehabilitation professionals is to learn from disabled people and the community about an alternative approach to disablements, and to change their own paradigm.
Combination of CBR and Disabled Peoples' Movement
Whereas CBR implementers are dominated by medical professionals, disabled peoples' movements are their own movements. Hence they have unique strengths: self-determination; a leading role for disabled people to define their needs and demand their rights; and setting a goal to stop unfairness in society, rather than "normalise" disabled people. These movements would raise a counter discourse to prevent the prevalence of medical discourse on disablements in CBR. However, in developing countries including Malaysia and Indonesia, these movements are based in urban areas and do not deal with issues in rural areas (Jayasooria and Ooi, 1994; Takamine, 1996: 189). Hence the combination of CBR and these movements is required to promote the participation of disabled people in rural areas.
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