Javanese Society, disability and Community Based Rehabilitation (CBR) By Carole Reckinger
DRAFT
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Javanese Society, disability and Community Based Rehabilitation (CBR) For Pak Joko* (34), the destructive earthquake that hit the provinces of Central Java and Yogyakarta on 27 May 2006 came as a blessing in disguise. The natural disaster that killed at least 5,778 people, injured over 37,883 and made an estimated 2,111,872 people homeless turned out to be a turning point in his life. 1 Pak Joko spent over four years in bed after he sustained a Spinal Cord Injury (SCI) from falling off a roof in 2002. A few months following the earthquake, Joko made a step back into life and is now not only able to leave his house independently, but he also works in a bengkel (mechanics workshop), grows his own vegetable garden and breeds fish. Recalling the four long years in bed, he reveals that “I saw the sunshine only once or twice a year”. Klaten, where Pak Joko shares a house with his father, is a rural area in the vicinity of two large cities, Yogyakarta and Surakarta. The area is mainly a tobacco and rice growing area, where the Javanese culture, which is known for its strong communal ties, is still said to be very strong. Pak Joko smiles when he talks about his long years without sunshine, contemplating: “I was just lying there”. Although he possessed a wheelchair, he can count the times he left his house in all these years. He explains that the step leading out of his house, as well as the terrain once outside prevented him from using his wheelchair. “We didn’t have the money to build a ramp” is his argument, but through the discussion it becomes clear that he was also too ashamed to go outside, and did not want to be a burden to anyone. Over all these years, his father looked after him, fed and washed him. Neighbours and friends sometimes came to visit, but Pak Joko believed that he would have to stay in bed until his end. Immediately after the earthquake, Karina KAS (a section of the Indonesian Caritas) started a mobile medical team that did home visits to provide medical rehabilitation. After the emergency phase, Karina KAS, with support from Caritas Germany, identified the needs for community based rehabilitation (CBR), and the CBR Klaten project formally began in 2007. A few months later, Pak Joko ‘was found’ and he has since then benefited from medical, social, economic, educational and psychological assistance.2
Understanding culture “Lain ladang lain belalang, lain lubuk lain ikannya” Different fields, different grasshoppers; different seas, different fish Knowledge and understanding of cultural and social beliefs and practices is of vital importance in the planning and implementation of community based programs for individuals with disabilities
1 JRS, Yogyakarta Earthquake, http://www.jrs.or.id/index.php?
option=com_content&task=view&id=27&Itemid=109 * name changed
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The information contained in this essay is based on secondary literature and reports, personal and informal discussions with beneficiaries and staff of Karina KAS, but also through visits to other disability organizations, NGOs and INGOs as well as discussions with people from all layers of Indonesian society about the topic of disability.
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that will make a real difference to their lives and the lives of the communities in which they live. 3 A recurring problem in development and aid approaches is that cultural and social understanding is at times very low, and blueprint practices are often applied regardless of the context. The dynamics of the relationship between local groups and the international community is often one of paternalism where those who hold the purse strings also hold the power. In the planning of many CBR programs in developing countries, Western concepts of ‘community’ are used which can conflict with cultural aspects 4. The Western notion of ‘individual rights’ is not applicable in many parts of the world where individuals are still born in a network of relationships that involve mutual obligations. In such a societal setting, people tend to look towards their immediate kin for help and welfare, rather than to formal services like people do in the West. The process of ‘empowerment’ of an individual is more complex, irrespective of whether he/she is a disabled person or not 5. For this reason, the cultural influences need to be understood before a rehabilitation program is designed. Cultural and social factors consciously and unconsciously influence our attitudes towards most of the happenings around us, including our attitudes towards disability and rehabilitation. Services are more effective when already existing resources are enlisted in strategies based on local knowledge, concepts and skills, with only a limited level of suitably adapted imports from other cultures and places. Customs in a given culture can provide models of best practices for community based approaches to rehabilitation and inclusion of people with disabilities (PWDs). “CBR works best the way local people see it and build it”6. When studying culture, it is important not to make sweeping generalizations about all individuals.
“Cultural beliefs are important to understand, as they provide an overview of beliefs and attitudes towards individuals with disability, but no individual lives in a culture. An individual lives within a social network, a matrix of family, friends and community. As such, there are a number of variables that must be taken into consideration when discussing individuals with disability in any society”7. These variables include, for example, cultural roles and rights linked to gender, class group, profession, marital status and so forth. Furthermore, in studying socio-cultural belief systems, care must be taken to ensure that they are not viewed as static and unchanging. Javanese society and culture is as complex as any other. The concept of culture is in fact semiotic and like Clifford Geertz “believing with Max Weber, that man is an animal suspended in webs of 3 Groce, Nora Ellen (2000) ‘Framing disability issues in local concepts and beliefs’ Asia Pacific Disability Rehabilitation Journal, Vol. 10. No. 1, http://www.dinf.ne.jp/doc/english/asia/resource/apdrj/z13jo0300/z13jo0303.html 4 Maya Thomas and M.J Thomas (1999), ‘Editorial: Influence of cultural factors on disability and rehabilitation in developing countries’ Asia Pacific disability rehabilitation journal, Vol.10 No.2 5 Ibid. 6 Miles, M (2003) ‘CBR works best the way local people see it and build it’. Asia Pacific Disability. Rehabilitation Journal, 14 (1): 86 - 98 7 Groce, Nora Ellen (2000) ‘Framing disability issues in local concepts and beliefs’ Asia Pacific Disability Rehabilitation Journal Vol. 10. No. 1,
http://www.dinf.ne.jp/doc/english/asia/resource/apdrj/z13jo0300/z13jo0303.html 2
significance he himself has spun, I take culture to be those webs, and the analysis of it therefore not an experimental science in search of law but an interpretative one in search of meaning” 8.
Indonesia and Javanese Society “Luka di kaki, sakit seluruh badan” A pain in the feet, the whole body feels it ‘Unity in Diversity’ is the national motto of Indonesia and few other places offer such cultural variety and geographical complexity as this vast archipelago composed of seventeen thousand islands that stretch over eight thousand kilometres along the equator. The home of the countries’ capital, Jakarta, the island of Java was once the centre of powerful Hindu kingdoms, Islamic sultanates, and the core of the colonial Dutch East Indies. Housing more than 130 million people (60% of the population), Java plays a dominant role in the economic and political life of the Republic. Java is multi-cultural, multi-ethnic, and multi-religious. The main ethnic groups native to the island are the Javanese, Sundanese and Madurese. Historically, the Javanese home base is mainly South-Central Java. Islam dominates but the Javanese culture is a mix of Islamic traditions of the Middle East combined with indigenous traditions based on Hinduism, Buddhism as well as traditional mystical beliefs. Javanese tradition is extremely rich and draws on a vast literature that spans at least a thousand years.
“In a half conscious, half unconscious way, this Javanist tradition serves as a referent to explain and rationalize practical behaviour, at least for the people of South-Central Java. Of course these latter may refer to more recent universes of meaning, such as being Indonesian, or adherents of a particular political theory, or members of a particular religion, most often Islam, but as soon as they refer to life close at home, to family relationships, the conduct of everyday life, the nature of understanding and knowledge, the relationship between self and society, and even the meaning of being Indonesian, they tend to implicitly or explicitly refer to kejawen9 categories of thought that demonstrate their Javanesesness or Javanese culture” 10. Consciousness of their own culture is a widespread phenomenon among the Javanese. “Javanism provides a general universe of meaning as an integrated body of knowledge that serves to interpret life as it is and as it appears to be” 11.
Communal relationships “Makan, tidak makan, yang penting kumpul” Eating or not eating, the most important is to be together 8 Geertz, Clifford (1973) ‘Thick Description: Toward an Interpretive Theory of Culture’. In The Interpretation of Cultures: Selected Essays. (New York: Basic Books) pp. 3-30. 9 Mysticism associated with the Javanese view of the world, general Javanese knowledge 10 Mulder, Niels, (1992) ‘Individual and society in Java : a cultural analysis’, Gadjah Mada University Press, Yogyakarta 11 Ibid
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According to a number of Java experts 12, to be Javanese means to be a person who is civilized and who knows his manners and his place. The Javanese are highly conscious of the existence of others and the ideal of communal life is to experience a harmonious community, rukun. This essentially means that if one helps others, one will be helped, and if one shows interest on the occasions of important events such as birth, weddings and deaths, people will show interest in return13. Communal life is interdependent and people are bound together by an elaborate system of mutual obligations and the willingness to help each other when necessary. The maintenance of ordered relationships is expressed in a certain pressure to live in conformity with the local norms and neighbourly obligations. These include, for example, obligations to participate and contribute in Gotong Royong (community self-help, mutual cooperation) where community members work together for the maintenance or construction of communal infrastructure or for the preparation of Independence Day celebrations. Members of the community are also expected to participate in other neighbourly obligations such as the neighbourhood night watch, Ronda. “In one form or another – material, labour, money, sending a representative – all families are expected to make their contribution to communal well-being”14. The concept of reciprocity is very important in Java and in Indonesia more generally. Linguistically, all the ways to say ‘you're welcome’ in Indonesian involves this notion of reciprocity: kembali which literally means ‘to return’, sama-sama which means ‘the same’ (samisami in Javanese). If someone does a big favor for you, you are expected to return it in some way - it doesn't matter when, but it should happen. Giving (free) labour to the community during a Gotong Royong is, for example, a form of reciprocal giving to the community. One way approaches, however, also exist and they are known in Javanese as Rame ing gawe Sepi ing Pamrih meaning to give rather than to receive. The opinion of others and the resulting gossip are much feared and keep people in line and outwardly conforming. For many, it therefore makes sense to lie low and to live up to expectations. Clifford Geertz noted that to the Javanese
“ ... emotional equilibrium, emotional stasis, is of highest worth, and on the corresponding moral imperative to control one's impulses, to keep them out of awareness or at least unexpressed, so as not to set up reverberating emotional responses in others”15. When one is insulted in one’s dignity, for example, it is wise to remain quiet.
12 Geertz, H. (1961) Javanese Family: A Study of Kinship and Socialization. New York: Free Press of Glencoe.; Mulder, M. (1978) and Everyday Life in Contemporary Java: Cultural Persistence and Change. Singapore: Singapore University Press.; Koentjaraningrat. 1957. Preliminary Description of the Javanese Kinship System. Southeast Asian Studies, Cultural Report Series. New Haven, Conn.: Yale University 13 Mulder, Niels (1992) 14 Ibid 15 Geertz, H. (1961) The Javanese Family: A Study of Kinship and Socialization. New York: Free Press of Glencoe. Quoted in Marian F. Zeitlin, Ratna Megawangi, Ellen M. Kramer, Nancy D. Colletta, E.D. Babatunde, and David Garman (1995): ‘Strengthening the family - Implications for international development’ The United Nations University Press: In http://www.unu.edu/unupress/unupbooks/uu13se/uu13se09.htm
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In ‘Strengthening the family - Implications for international development’ it is argued that a certain psychological groundwork is laid since early childhood in which ability to control any expressive behaviour is taught, and as a consequence inaction rather than action is often the consequence:
“Constant protection from any unpleasant shock, and hence from exploration during infancy, may serve to build a passive attitude. Passivity also is encouraged through teaching polite behaviour. Children are actively supervised and repetitively advised to adopt proper behaviour or be frightened by threats of strangers and bogey men”16. The proximity of living does not necessarily lead to intimacy or strong interpersonal bonds. Interpersonal relationships are hierarchical and the attitude of respect and hierarchy in social relationships is reflected in the Javanese language that always acknowledges the relative status of the other person in a hierarchical fashion. 17 Koentjaraningrat hypothesized that the concept of respect and social harmony in day-to-day life entails a certain ‘cost’. The great reliance on, and respect for, seniors and superiors can diminish the sense of self-reliance. Obedience can lead to unwillingness to take risks because it is felt unsafe to act without the support of other people with whom one can share the responsibility. 18 Infractions of the social rules are not intrinsically bad as long as one visibly conforms. A good person is described as someone who knows the feeling of shame and who fears the opinion of others19. Confrontation is avoided at all cost and a mutual avoidance relationship, nengnengan may last a life time as to give in or to forgive is considered as losing face. This can also include an avoidance of confrontation with the concrete, objective world and the importance of fantasy and self deceit.20 Nils Mulder gives an example where slogans of development were a self made truth in which elements of show, false reporting, wishful thinking and shaky statistics contrast sharply with the real conditions and concrete achievements. For example, people attended a family planning session because they were asked to do, but its results were negligible. It is furthermore, remarked that “we Javanese are a closed people. We show and tell you one thing and hope that it pleases you, but we will never show our inside” 21. Social change is rapidly taking place, and everybody experiences changes where communal ties become weaker and where knowledge of cultural heritage is declining. In the current experience of society, the cleavage between individual and society is changing. On the one hand, these changes lead to greater individual freedom and on the other hand, to an orientation to other forms
16 Marian F. Zeitlin, Ratna Megawangi, Ellen M. Kramer, Nancy D. Colletta, E.D. Babatunde, and David Garman (1995): ‘Strengthening the family - Implications for international development’ The United Nations University Press: In http://www.unu.edu/unupress/unupbooks/uu13se/uu13se09.htm 17 Mulder, Niels (1992) 18 Koentjaraningrat (1957) ‘A Preliminary Description of the Javanese Kinship System’ Southeast Asian Studies, Cultural Report Series. New Haven, Conn.: Yale University Quoted in Marian F. Zeitlin, Ratna Megawangi, Ellen M. Kramer, Nancy D. Colletta, E.D. Babatunde, and David Garman (1995): ‘Strengthening the family - Implications for international development’ The United Nations University Press: In http://www.unu.edu/unupress/unupbooks/uu13se/uu13se09.htm 19 Mulder, Niels. (1992) 20 Ibid 21 Ibid
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of organization and association in which colleagues, friends and relatives acquire new importance. Nonetheless, Niels Mulder argues that:
“people are still expected to enact their positions and are not supposed to initiate constructive, innovative, or critical roles as socially concerned individuals. Cognitively a person’s individuality is not even part of society but an entity that stands next to it. Consequently, individual life and opinions are private affairs and of no concern to society”.22 Inter-personal relations are very complex in Javanese culture. More generally, however, Javanese culture is very flexible and highly adaptable as the rich history shows.
Disability “The only disability in life is a bad attitude” The definition of disability and how PWDs perceive themselves are knotty and complex. Disability scholars describe four different historical and social models of disability: a moral model of disability which regards disability as the result of sin; a medical model which regards disability as a defect or sickness which must be cured through medical intervention; a rehabilitation model, which regards the disability as a deficiency that must be fixed by a rehabilitation professional; and a disability model, under which "the problem is defined as a dominating attitude by professionals and others, inadequate support services when compared with society generally, as well as attitudinal, architectural, sensory, cognitive, and economic barriers, and the strong tendency for people to generalize about all persons with disabilities, overlooking the large variations within the disability community."23 In recent years there has been a shift in thinking from the individual medical model, in which the disabled person is required to fit in with the norms of an able-bodied society, to the social model, in which society must adapt to the needs and rights of disabled people. Although this shift has taken place in international policy circles, it takes a long time for such a revolution to have a practical impact on services and opportunities all over the world .24 Disability is an evolving concept and results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others. Disability is also largely a social construct. If one imagines ‘the disabled’ at one end of a spectrum and people who are extremely physically and mentally capable at the other, the distinction appears to be clear. However, there is a tremendous amount of middle ground in this construct, and it's in the middle that the scheme falls apart. What distinguishes a socially ‘invisible’ impairment - such as the need for corrective eyeglasses - from a less acceptable one - such as the need for a corrective hearing aid, or the need for a walker? Functionally, there may be little difference. Socially, however, some impairments
22 Ibid 23 Deborah Kaplan, The Definition of Disability, the centre for an accessible society, http://www.accessiblesociety.org/topics/demographics-identity/dkaplanpaper.htm 24 Peter Coleridge (2006), ‘CBR as part of Community development and poverty reduction, CBR as part of Community Development: A Povert reduction strategy, University of London, Centre for international Child Heath, London
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create great disadvantage or social stigma for the individual, while others do not. Some are considered disabilities and some are not.25 Statistic data from the United Nations shows that of an estimated 500.000 disabled people, about 80% reside in developing countries. Less than 10% have access to education, health services and livelihood opportunities26, more than 80% are unemployed27, and in developing countries 75-90% live below the poverty line28. Poverty and disability tend to be mutually reinforcing as PWDs are commonly socially excluded and do not have access to adequate social services 29. In Indonesia, estimates about the number of disabled people range from 0,5% 30 to 10%31 of the total population. This clearly shows how little is actually known about the number of people living with disabilities. The majority of PWDs have no access to government welfare or specialized medical treatment and are often socially marginalized. By law, PWDs have the same rights as everyone else (law No. 4 of 1997) and are supposed to have equal access in social and political life, education, social welfare, medical care, jobs and access to public facilities and
25 Deborah Kaplan, The Definition of Disability, the centre for an accessible society, http://www.accessiblesociety.org/topics/demographics-identity/dkaplanpaper.htm
26 Handicap International (2006), ‘Disability in Development: Experiences in Inclusive Practices’, Handicap International
27 ILO (2002) quoted in Robinson W. Saragih (2006), ‘Indonesia Country Paper: Regional Preparatory Workshop for the 8th Session of the Ad Hoc Committee ( AHC) on the International Committee for Right and Dignity of Person With Disability’20 -21 July 2006, Bangkok, Thailand
28 World Bank 2001 quoted in Robinson W. Saragih (2006), ‘Indonesia Country Paper: Regional Preparatory Workshop for the 8th Session of the Ad Hoc Committee ( AHC) on the International Committee for Right and Dignity of Person With Disability’20 -21 July 2006, Bangkok, Thailand 29 Robinson W. Saragih (2006), ‘Indonesia Country Paper: Regional Preparatory Workshop for the 8th Session of the Ad Hoc Committee ( AHC) on the International Committee for Right and Dignity of Person With Disability’20 -21 July 2006, Bangkok, Thailand 30 Ibid. 31 Ibid.
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services32. This, however, is only the situation on paper and it might not come as a surprise to most people that reality looks very different. Few legal or social pressures exist that promote a non-discriminatory stance on disability. It is neither considered to be a ‘sexy’ topic, nor is it seen as a high priority issue. “In Western countries disabled people were once expected to be passive, obedient and dependent. They supposedly lacked motivation to help themselves or to be involved in social roles or activities. This describes the current situation in Indonesia, where disabled people are merely regarded as having medical and rehabilitation problems” 33. Disability has many faces and can take many forms; integration or marginalization is experienced differently by every individual. Women with similar impairments or men and women with other types of impairments may experience social isolation or community discrimination differently. In societies in which most adults engage in substantial amounts of physical labour, as it is still the case in Klaten, individuals with mobility impairments may be at a distinct disadvantage. For this reason, the focus will be kept on SCIs. After the earthquake, this was considered to be the most serious type of permanent disability in the area, and constitutes the majority of beneficiaries of the CBR Klaten project34. In contrast to many other rehabilitation programs that concentrate on medical treatment only, the Klaten CBR project aims to reintegrate PWDs back into their community through programs working not only with the beneficiaries, but also with their families, the community and the local government.
Barriers to reintegration after sustaining a disability “There are not many who would announce their faults with a gong” It is no secret that people suffering from a disability are often subjected to negative social attitudes that take the form of exclusion from, or lack of access to, social roles and activities. After sustaining a disability such as SCI, opportunities to be educated, to work, to socialize and to go to public places generally become more restricted due to physical and social barriers. This is the case with varying degrees all over the world, and Java is no exception. Physical barriers that restrict access are more easily recognized than social barriers. Indonesia is definitely not a wheelchair friendly country and even the capital Jakarta has only an estimated 3%
32 Asia Pacific Development Centre on Disability: Current Situation of Persons with Disabilities http://www.apcdproject.org/countryprofil e/indonesia/situation.html 33 Inge Komardjaja (2001), ‘New cultural geographies of disability: Asian values and the accessibility ideal’, Social and cultural geography, Vol 2, No 1 34Following the earthquake up to the present, the Klaten team has had 60 beneficiaries (31 were SCI and 29 with multiple fractures. 15 of those are not earthquake victims)
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accessibility for people with disabilities 35. For wheelchair users, problems of accessibility start at home and can include entry and exit, mobility within the home and access to facilities such as the bathroom. Once outside of the house, the physical barriers become near universal. The majority of roads have high pavements without wheelchair access and in rural areas many roads are uneven and unpaved, consisting at times of mud and stones. This is also the case in Klaten, where most wheelchair users (after having re-adapted the house), will find their mobility severely restricted once outside their house. A mobility survey conducted in 2007 by Karina KAS Klaten shows that the mobility of their 40 beneficiaries is restricted for 34% to their immediate neighbours and 33% to their RT (Rukun Tetangga - consisting of a few households). Mobility of SCIs Village, 3% 1 2 3
House, 3% Neighbouring Village, 27%
Close neighbours, 34%
4 5
Neighbourhood (RT), 33%
Klaten is a rural area, where many people still ride a bicycle or walk. In places where public transport exists, access with a wheelchair is not possible. Furthermore, wheelchairs are expensive and tend to break down easily when used on uneven terrain. It needs to be kept in mind that most families cannot afford a wheelchair accessible motorbike36, and currently none of the families of PWDs own a car. If the physical barriers are many and pervasive, the social ones are even more widespread. They are invisible and embedded in culture and tradition that affect people’s behaviour for long periods of time and tend to be more resistant to change. Inge Komaradjaja, an Indonesian scholar who is herself walking impaired, argues that people with limited mobility are in many instances restricted from participating fully in social life. It is, for example, tradition to take off one’s shoes at the entrance of the house. For wheelchair-bound and mobility impaired people, this might be problematic. Furthermore, squatting, kneeling and sitting on the floor are habitually performed in household work and traditional ceremonies. PWDs might be unable to assume such body positions. Gatherings to celebrate many communal events and religious assemblies are traditionally performed on the floor. Chairs might be provided for older people, but it is important to consider that many people would rather not be the centre of attention because of their handicap.37
35 Sirait Bunga (2008) ‘Disabled megalopolitan’ Inside Indonesia 91: Jan-Mar 2008 36 A motorbike that is reconstructed so that it can be driven with a wheelchair 37 Inge Komardjaja (2001),
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Through numerous interviews conducted with people with SCI and other disabilities, their families and CBR team members, a number of recurring reasons were cited as to why disabled people are marginalized. The most often cited reason was malu (Isin in Javanese) which can be translated into shy, embarrassed, ashamed and shame 38. Nearly all people interviewed used this word to describe how both PWDs and their surrounding feel. This feeling of shame and embarrassment causes all kinds of difficulties. The disabled person feels ashamed and consequently might avoid asking for help and assistance, avoid meeting people and might even retreat completely as it was the case for Pak Joko. For the family, the shame will affect the relationship with the disabled family member as well as with the neighbours and the rest of the community. The family and community might not know how to interact with and treat the person following the accident.
“While people with disabilities throughout the world endure social oppression and spatial marginalization, in Indonesia poverty and ‘shame culture’ exacerbates their difficulties. In the culture of shame, visible physical appearance is more significant than the invisible forces that control attitudes. In such a society it is not easy for disabled people to be accepted”39. More relevant in cases of mental or physical disability since birth, this feeling of shame can go as far as locking a disabled person up in the house, to hide him/her from all glances of the surrounding. Negative community attitudes towards the disabled can be witnessed in a Suara Merdeka40 article that reported the death of a man with a psychiatric disability who had been tied up at the back of his parents’ home in Cilacap, Java. The newspaper did not condemn the family but rather reported that the man was bound up to keep him from harming himself and his neighbours, as well as giving his parents some relief from watching him closely. This feeling of shame is a reason why it is still difficult to locate people in need and compile statistics, as many are still hidden away by ashamed relatives. Another often cited feeling expressed when talking about disability is kasihan (mesake in Javanese) which can be translated into love, pity, or ‘poor thing’. 41 This is generally expressed through too much care, help and attention. By taking all work and responsibilities out of the hands of the disabled person, any chance of independence and self initiative will eventually be repressed, which in turn unintentionally marginalizes the person. Excessive care will automatically project a picture of weakness and inability to perform the same tasks as ‘normal people’. It is important to keep in mind that following a SCI or other lasting disabilities, great changes will take place in the life of the person affected and his surrounding that naturally take time to adapt to. Many go through phases of depression and might want to isolate themselves because of shame or of not wanting to be a burden to their families or caretakers. PWDs might not only regard themselves as a burden, but might be regarded so by their environment. The physical restrictions of PWDs often cause negative valuation from the social environment and the utilitarian spirit that values humanity only by use is often too deeply embedded.
38 John M. Echols and Hassan Shadily (1989) ‘Kamus Indonesia Inggris’ Gramedia 39 Komardjaja, Inge (2001) “The malfunction of barrier free spaces in Indonesia” Disability Studies quarterly, Volume 21, No.4, pages 97-104 40Suara Merdeka (2002) quoted in Byrne, Janene ‘Disability in Indonesia’, Inside Indonesia 41 John M. Echols and Hassan Shadily (1989)
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This is just a small selection of causes for marginalization and the list could easily be extended. Prejudices, stigma and obstacles to reintegration are great and depend of course on each individual, his/her attitude, gender, age, education, place in society and the status and support of his/her family. Without doubt however, disability still carries many stigmas in Indonesia. Stigma is closely related to notions of social exclusion and the symbolic tagging of individuals deviant from a social norm. Chan, Stoové & Reidpath 42 argue that the concept of reciprocity is useful for understanding the relationships between stigma and social exclusion. In essence, reciprocal exchange occurs both between individuals and at the broader levels of society. The process has been regarded as a critical process that assisted in bringing society and culture into existence. 43 For example, as individuals draw upon societal resources (e.g. healthcare, education), they have a moral obligation to contribute to those resources through taxation or other means. Failure to reciprocate violates that social trust and indicates a high cost to the community of maintaining a person or group's opportunity to draw on shared resources. In the interests of the community, groups or individuals who are marked as poor reciprocators (i.e. stigmatised) are then excluded from routine social processes. A number of conditions could lead groups and individuals to be judged too costly for social inclusion. One of them is when the potential recipient of the resource is regarded as incapable; i.e. no matter how well intentioned, they may lack the means to repay the social debt.44 Incapability is often relevant to the general perception of people with a disability. The perceived burden of PWD’s on the social system, for example, is extensive. As argued earlier, the concept of mutual help and reciprocity is very important in Javanese culture. The question arises if this extends to PWDs. The crucial word of mutual help is mutual and if nothing can be given in return on a long term basis, no help or assistance might be given.. This reaction is not inherently Javanese, but is widespread all over the world. It should not be regarded as intentional, but rather as a certain reflex of survival in a society where people still live on the brink of poverty. It has been noted that children with disabilities are often neglected in relation to their ‘normal’ siblings in terms of schooling, for example. As a result, only about 10% of disabled children have access to education in Indonesia. A common perception is that ‘investing’ in the ‘normal’ child will bring more benefit to the family, as they will be able to support the parents economically in old age. In order to combat this stigma and social exclusion, a change is necessary from passivity, dependence, sometimes abuse and neglect, to a situation where the disabled person is enabled and empowered to utilize his/her potential and to contribute and be part of the family and community.
Community Based Rehabilitation Since its inception about three decades ago, CBR has evolved as a social model for enhancing the quality of life for PWDs, particularly those in developing countries. WHO, UNESCO, ILO (1994), define CBR as a ‘strategy within general community development for rehabilitation,
42Kit Yee Chan, Mark A Stoove, Daniel D Reidpath (2008), 'Stigma, social reciprocity and exclusion pf HIV/AIDS patients with illicit drug histories: a study of Thai nurses attitudes', Harm reduction Journal, 5:28, http://harmreductionjournal.com/content/5/1/28 43Levi-Strauss C (1957), 'The principle of reciprocity' in Sociological Theory, Edited by LA Rosenberg B: New York: Macmillan 44Daniel D Reidpath, Chan KY, Allotey P (2005), 'He Hath the French Pox: Stigma, social value and social exclusion', Social Health Illn 2005, 27
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equalisation of opportunities and social inclusion of all children and adults with disabilities. CBR is implemented through the combined effort of persons with disabilities, and the appropriate health, education, vocational and social services”. 45 CBR promotes not only the rights of persons with disabilities, but also seeks to create an environment where they can have equal opportunities with their able bodied counterparts, and are allowed to participate fully in all activities of the society. However, CBR is still a relatively new way to cope with disability which has not always been successful in its many forms, nor has it been accepted by everyone as t he best or the only approach to promote equal opportunities and full participation of PWDs 46. Following the earthquake and the emergency phase that followed, Karina KAS through financial and technical support from Caritas Germany, initiated a CBR project first in Klaten (Province of Central Java) and then in Bantul (Province of Yogyakarta). The goal of these CBR programs is to “maximally increase the independence of disabled people and to reintegrate them into the structure of the local community via empowerment and capacity building activities in accordance with the principles and concepts of the program: participation, inclusion, sustainability and selfadvocacy.47 The CBR team consists of a medical, livelihood, education, empowerment and social life division team.48 49 Initially, the main target group of the program were people with SCI and multiple fractures as a result of the earthquake, but over time, CBR staff identified other people with SCI (such as Pak Joko) and started to include those physically disabled by other causes. The inclusion of people suffering from non-earthquake related disabilities is difficult as there is no database of disabled people living in the area. The government does not have much information and many disabled people are not reported because their families do not know how, or because they feel ashamed. Furthermore, health workers in the field have no or very little knowledge about early detection.
Opportunities and challenges for CBR Klaten CBR aims to increase empowerment, rights, equal opportunities and social inclusion of all PWDs. To reintegrate disabled people back into their community a bottom to top approach is used. The first challenge is to work with the disabled person and his family, then with the immediate neighbourhood, spanning wider and wider circles. Tavee Cheausuwantavee argues that in practice, however, much of the community might still have negative attitudes towards PWDs 50. The story of one of Karina KAS’ beneficiaries illustrates this challenge. For the first weeks following the earthquake and the spinal chord injury Pak Yantoyo*spent all of his time indoors (very much like Pak Joko). His family did not know how to look after him, and as a result he was quite untidy and generally looked unkempt. Once the CBR team got involved, they encouraged 45 WHO, UNESCO, ILO (1994), Joint position paper on CBR, Geneva 46Tjandrakusuma, Handojo (1998): Towards the 21st Century: Challenges for CBR in Asia and the Pacific Region, Asia Pacific Disability Rehabilitation Journal, 9(1), P.9-12. 47 Karina KAS (2008), CBR narrative report July-September 48 As I was writing this, the aim of the program changed (which shows the flexibility and the evolution of the program). ‘The aim shifted to: People with disabilities are participating in the community network and included in the government structures and local organizations’ 49 The program is based on the WHO matrix and guidelines of 2005
50 Tavee Cheausuwantavee (2007) ‘Beyond Community based rehabilitation: Consciousness and meaning’ , Asia Pacific Disability rehabilitation Journal Vol.18 No.1 * Name changed
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the family to bring Pak Yantoyo outside of the house for a few hours everyday. One neighbour, however, complained and asked why the family was making such a show by parading their scruffy looking family member around in a wheelchair. Hearing this, the CBR team immediately started a dialogue with the neighbour, explaining SCI and its consequences. After a few discussions, the neighbour started to accept the situation and this shows that through communication many prejudices can be reduced and even solved. A survey conducted in December 2007 about the quality of the relationship with their immediate neighbourhood shows that all beneficiaries without exception answered ‘good’. This is a very positive result, demonstrating that the CBR approach of communication, education and dialogue with the community has been successful. Nonetheless, the question needs to be raised how honest this answer might be. Keeping Javanese culture in mind, where at least on the outside the ideal is a harmonious community, it might be difficult to get a true picture of how accepted the people really feel and are. The Javanese way of outward politeness will make it difficult to find out how deeply the negative attitudes are still anchored. Furthermore, it will be difficult to find people in the community that are willing to – what we would call in the West – ‘openly speak their mind’. At the same time as working on a micro-level with the family and the community, CBR is socialized to local government and beyond. Eventually, the aim is for Karina KAS to withdraw and the local government, together with the community network and the PWDs themselves, to take ownership of the program. This is a long term process, and it is too early to say if it will succeed or not. On a government level, it has so far taken time and effort to inform and collaborate to establish strategies to support the community, including PWDs. The working mentality of government staff has sometimes been limited and expectations to get an ‘ext ra income’ exist. Furthermore, a very good relationship might be built with a village leader or government official. However, once a new person takes up the post, the nature of the relationship might change, especially if the new person shows no or little interest in working for the inclusion of PWDs. The hierarchy of the government structure, however, might come in as a help, especially if the project has been well socialized and pressure can be applied from the top. It needs, however, to be kept in mind that many rural communities in developing countries are often exposed to severe economic pressures. During this time, their primary focus shifts to survival and overcoming poverty rather than dealing with disability. Karina KAS is a Catholic organization working in a majority Muslim environment. The catholic identity is at times hindering engagement in the community and suspicions of kristianisasi are present. The team, however, is multi-religious (Catholic, Protestant, Muslim and Hindu), and has so far been very successful in demonstrating to the community that the aim is solely to work for the inclusion and empowerment of PWDs and that religion does not play a role. In fact, the large majority of beneficiaries are Muslim. All field staff of CBR Klaten are Indonesian (most of them are Javanese) and know the Javanese culture and society well. They know how to manage relations both with the government officials and the community. Following the earthquake, a debate took place within the INGO/NGO community about telling people with SCI that their condition is irreversible. Even months after the earthquake, many people still believed that their condition was only temporary. A number of INGOs supported the idea to “throw them in the cold water and just tell them”. The CBR team, however, rejected this idea as it goes against the Javanese way of dealing with big shocks. As we have seen earlier, protection from any unpleasant shock is widespread since childhood. The team feared that “just telling them” would cause such a shock that people would attempt to commit suicide (which was the case with a number of people). Instead, they opted for a more subtle way, where the
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beneficiaries were very slowly prepared to understand their condition. Interestingly, in this case, javanism proved more significant than the catholic concept of ‘do not lie’. The CBR team aims to work within existing traditions and to respect the local culture. As a consequence, the team has so far experienced little resistance from the community when encouraging the involvement and empowerment of PWDs. Seeing the success of the project, the Bantul community approached Karina KAS and asked them to implement a CBR project in their regency51. The aim of CBR is to gradually expand, and the first steps for this have been achieved in a very short timeframe. Cooperation with the local community and government has so far been good. This, however, might be different with other groups of PWDs that carry more stigmas, such as leprosy. Strong foundation stones are currently being built to tackle stronger stigmas, and CBR aims to include all people living with a disability. A CBR project in a community including people with leprosy is currently under review. So far, all initiatives come from the CBR team. The aim is to empower PWDs to the point where they become promoters of their own rights. By becoming themselves empowerers of more and more people living with disabilities, the circle of people reached will multiply. A difficulty to the long term success of the project might be the low level of willingness to take risks, showing initiative and ‘out of the box’ thinking that is deeply embedded in Javanese society. Difficulties might be encountered to find PWDs and members of the community who come up with new ideas and show enough initiative and willingness to push them through. Inaction and a certain level of passivity are apparent when looking at the case of Pak Joko. For all those years, no initiative was taken to communally build a ramp from his house or to level the street in a gotong royong action. It seems that an organization first needed to come in and take responsibility and show initiative by organizing it. The question needs to be raised that if the CBR team withdraws (which is eventually the objective), will the activities be continued? It is too early to answer this question, and although most beneficiaries have become more self confident and have made a big jump in taking their life into their own hands again, it still is a long way until they will be independent advocates of their rights. PWDs will need to overcome the feeling of malu, need to become more independent and feel that they can contribute to their community. A first step for this is to increase the self-confidence of the beneficiaries. Their psychological well-being can be examined to a certain extent through a survey that asked how big their wish to learn new things is. The answer was ‘big’ for 42%, which shows that many are willing to take part in life again, to contribute and to learn. Wish to learn new things
1
Medium, 40%
Big, 43%
2 3 Small, 17%
51 Bantul, about 40km South from Klaten was also hit very seriously by the earthquake
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The latest narrative report of Karina KAS shows that home visits have also decreased greatly (only 6 times to 5 beneficiaries over three months). Many beneficiaries have become independent enough to look after themselves (in many cases through help from family members) and to handle many health care problems themselves.52 A survey on the independence of looking after oneself, conducted only a little bit more than a year after the start of the project shows that 93% of the respondents answered ‘good’. The ability to look after themselves Medium 4%
Not good, 3%
1 2 3
Good, 93%
Pak Joko, who was a year earlier still completely dependent on the help of his father, has regained in a very short timeframe some independent mobility. He, like all other beneficiaries, has a wheelchair-accessible bathroom and has learned how to get in and out of the wheelchair by himself. The accessible bathrooms and ramps leading up to the house are built through sharing the work in the community. The concept of Gotong Royong is used to assist the beneficiaries in the construction. This is a very positive example as to how local tradition and culture can be used positively in CBR projects. The CBR concept aims to include both the community and to increase participation of the disabled people within this community. In a quantitative survey about participation in their close family and close surrounding in December 2007, Pak Joko was placed in the category ‘good’ 53. Participation in the community Quite Good, 10%
1 2
Small, 10%
3 4 5
Very small, 3%
Good, 54% Medium, 23%
The survey included questions such as ‘do you take part in casual recreational/social activities as much as your peers do? (e.g. sports, chat, meetings)’, or ‘are you as socially active in the community as other people are?’. Looking at the situation Pak Joko was in only a year earlie r, his
52 Karina KAS (2008), CBR narrative report July-September 53For more information on the survey, please refer to annex.
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participation increased significantly. An interesting fact, however, is that none of the SCI respondents are able to attend the mosque, as none of the local mosques have a wheelchair access. Religion plays a very important role, and not being able to participate in prayers in the mosque is a factor of social exclusion. The question can therefore be raised how high the participation actually is. Because of low self-esteem, the beneficiary might think that his/her level of participation is the highest that can be achieved in his/her situation, although it remains low in reality. In terms of economic independence, the latest survey shows that 97% still consider themselves as being dependent on their family. Inclusion of PWDs in the labour market is important as it increases the recognition of the capabilities of PWDs and enhances their participation in the general economic life of the community. Most of Karina KAS beneficiaries are slowly entering livelihood programs and start to contribute to their family’s income again, either through selling goods, breeding goats or fish, or even by working in a bengkel producing wheelchair accessible motorbikes, such as Pak Joko does. The economic position within the family
1
The economic backbone of the family, 3%
2 Dependent, 97%
The livelihood division team has noted that many of the beneficiaries still have a consumer attitude. It has been noted that PWDs quite often adopt a passive stance, where they expect to receive only. The influx of NGOs and INGOs after the earthquake had in places a negative impact on Gotong Royong and other mutual help systems. Goods and services were at times handed out for free which has had a negative long term impact. Gotong Royong actions to rebuild infrastructure or houses were not needed anymore, and jealousy was on the increase as some families received more ‘free’ help than others. This attitude makes livelihood projects more difficult. Karina KAS offers micro loans that need to be repaid, but other organizations still give out free grants and other goods54. It is import to keep in mind that the Karina KAS CBR program is still very young, and that no miracles can be attained overnight. The process of empowerment and eradication of stigma and exclusion will naturally take some time. The questionnaire was done only one year after the earthquake and no follow up exists as yet, which makes it difficult to measure actual progress. More of these surveys need to be conducted over the following years to follow the impact CBR has over the long term. The concept of CBR is constantly changing. In CBR people work together in an inter-dependent way and rely on each other to achieve programme and individual objectives. Objectives might differ, but every ‘stakeholder’ has a say in the process and should be allowed to exert influence
54 Karina KAS (2008), CBR narrative report July-September 2
and gain a feeling of ownership. CBR is about people, not just people with disabilities, but people living together in a community with a desire to develop their community. Empowerment does not apply to people with disabilities alone but to all people involved. The aim of CBR is not to reach individuals with charity, but to multiply empowerment to the whole community. Multiplication is important as an individually based program is not sustainable in the long run.
Conclusion Where there is No Vision, the People Perish When seeing Pak Joko either working in the bengkel or looking after his fish or vegetable garden, it is difficult to imagine that only two years ago he was completely bed-bound. If the project is measured in light of his personal experience, it has been very successful. This positive development is certainly not restricted to him alone, and most beneficiaries have gained more independence and accessibility since the inception of the project. At an individual level, a change has taken place from passivity and dependence to a certain contribution to the family and community again. The CBR program has managed to lighten many of the families' burden by lowering the beneficiaries' level of dependency. As well, income generating activities have helped to give PWDs a contributing role, even if it is still minimal. On the community level, there are indications that previously neglected issues related to disability have come to the forefront. In general terms, PWDs in Klaten are slowly being accepted as participants in the community. However, the project should not stop here. It is still largely based on an individual level, and in order to be successful in the long term it will slowly need to shift from individual aid to community development. An individually based approach is neither desirable, nor sustainable in the long term. It is important to keep in mind that CBR is not only for people with disabilities, but people living together in a community with a desire to develop their community. Disabled people do not exist outside the rest of the society, but they are part of the community as a whole. The process of empowerment both for the PWDs and the community, however, is long and will not be achieved overnight. The community based approach is compatible with the Javanese culture, as the focus is not the individual, but the whole community. In general the Javanese culture has many aspects that are conducive for a successful implementation of a CBR program. The strong culture of community help and community spirit has made work for Karina KAS easier in many ways. CBR is a very flexible concept, which in practice varies from place to place, depending on the setting. CBR has to develop and evolve its own strategies and methods in relation to the context. Innovative use of local resources, interventions can be made more appropriate, more effective and more acceptable, besides of having the advantage of building on what may already exist in the community by way of traditional forms of rehabilitation.55 Karina KAS has so far been successful in drawing on local sources and developing the CBR program according to local needs. The project has received much praise from many sides, and calls for replications have arisen. Naturally, the program still faces a number of challenges and not every beneficiary has
55Maya Thomas, M.J. Thomas (1998) ‘Controversies on some conceptual issues in Community Based Rahbilitation’ Asia Pacific Disability Rehabilitation Journal Vol.9, No.1
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‘recovered’ as well as Pak Joko. The big leap forward that Pak Joko has done is, however, not the end yet. He has no intention of stopping here. He is looking for a wife, would like to have children and one day have his own mechanic workshop. Most importantly, he would like to help others that are in the same situation he was in a few years ago. It is this spirit that will bring the shift from individual aid to community development and multiplication of the project.
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