Underneath the SOFT case is presented briefly. SOFT is an acronym of Save Our Future Talents that refers to multiple handicapped children. At the same time, this acronym is also referring to NGOs whose co-operation furthers the improvement of the medical care of children and youngsters with special needs in Hungary, Moldavia, Romania and Ukraine. While their care is the core of the international co-operation, the latter also explicitly aims at the strengthening of civil society. In this paper, civil society is indicated as the main source of social capital.

Social capital

Although the concept social capital became towards the turn of the century popular, there is no general agreement on what it is. Its conceptualisation is, therefore, still in progress and bears the hallmark of the political scientist Putnam (1993) who succeeded in attracting to this phenomenon the attention of researchers in economics and sociology by pointing out that the living of standard is higher and the authorities are more responsive as well as effective in countries and regions that are rich in civic communities (Dekker, 2003). The implications of Putnam’s success are important enough: further and more empirical research concerning questions relative to social capital as well as growing interest in the latter on the side of politicians and policy makers. This interest finds expression a.o. in the attention paid to the phenomenon at stake by organisations like IMF and OECD (Van Schaik, 2003). According to Côté (2002), an increasingly accepted definition of social capital is proposed by the latter: “networks together with shared norms, values and understanding which facilitate co-operation within or among groups”. In OECD surveys general trust in society, civic participation and participation in adult education are considered as indicators of social capital. The outcomes show a relatively high level of it in Nordic countries, whereas the post-communist Czech Republic, Hungary and Poland show a significant shortage. In Fukuyama’s (2002) view, this might be ascribed to a relatively small average radius of trust of co-operative groups. Such societies are lacking in social trust because, as he says, in the totalitarian era the rulers deliberately targeted and sought to undermine civil society and to atomise individuals.

After the collapse of communism, it was clear that in the involved countries there should be democracy and a free market economy. Trying to support the transition from dictatorship to democracy and from centrally controlled economy to an economy based on free enterprise, authorities in Western countries and in the European Union realised that free elections and privatisation of enterprises were not enough to ensure a sustainable development of the young democracies. A cultural infrastructure was necessary as well. In view of this, assistance has been rendered also to the strengthening of civil society. It was recognised that there was a relationship between civil society and social capital. How to increase the stock of social capital was, however, not very clear.

Civil society

Civil society is not the one and only source of social capital. Côté (2002), for instance, stresses the role schools can play in its creation and maintenance. Reflecting on the question how the stock of social capital can be increased, Fukuyama (1999) accentuates the responsibilities in this connection of governments, although states do not have that much levers for its creation. Social capital is, as he says, frequently a by-product of religion, tradition, shared historical experience, and other factors that lie outside the control of governments. Their greatest ability to generate social capital is probably education because educational institutions do not simply transmit human capital. They also pass on social capital in the form of social rules and norms. Governments can foster the creation of social capital as well by creating conditions in which people can freely associate, volunteer, vote or take care of one another. To the accumulation of social capital preservation of a sphere for individual action and initiative in building voluntary associations is essential. States should not undertake activities that are better left to civil society or to the private sector. The ability to co-operate is in Fukuyama’s perception based on habit and practice, “if the state gets into the business of organizing everything, people will become dependent on it and lose their spontaneous ability to work with one another”. Experiences gathered in post-communist countries are in accordance with this statement.

Looking more closely to civil society, one may say that it consists of countless and diverse voluntary associations, usually called NGOs, including their institutions. Their multiplicity and plurality indicate that it is not dominated by a central power, by the ideology of certain political party or by an infallible leader (Gellner, 1994). It should be noted, by the way, that voluntary organisations are not associations of volunteers alone. A foundation or an association can have, for example, a board and membership consisting of volunteers, while its employees are paid professionals. Therefore, the adjective ‘voluntary’ refers not to volunteers but to the fact that such organisations come into being because in view of common goals people join voluntarily.

Voluntary associations are, furthermore, simultaneously bastions and schools of democracy. They are bastions of democracy because people who join voluntarily defend their collective autonomy against centralistic tendencies. They are schools of democracy because people joining voluntarily learn together how to define common problems, how to find solutions for these and how to work effectively in order to arrive at the envisaged aim. Alternatively, they learn to co-operate in the formulation and implementation of policies in accordance with democratic habits.

Civil society comprises not ‘only’ schools of democracy where people learn how to be autonomous citizens. It offers countless spaces where people also learn how to cope with problems they are facing. Moreover, when they gather voluntarily, the people discuss freely politics as well as issues of individual or collective nature, exchanging information and evaluating what they see and hear. They shape and/or adapt in this way the model of reality in their minds, influencing each other’s ideas about what is ‘good’ and what is ‘wrong’. In fact, civil society is the social space where social information and knowledge are created and diffused, as well as the space where values and norms precipitate. This dimension of growing importance as in our progressively globalized world many traditional values and norms are adrift. In this context, an appealing allegory of Christie might be elucidating (Bauman, 1999):

“Moses came down from the mountains. Under his arm he carried the rules, engraved in granite, dictated to him by one even further up than the mountains. Moses was only a messenger, the people - the populus - were the receivers ... Much later, Jesus and Mohammed functioned according to the same principles. These are classical cases of 'pyramidal justice'.

And then the other picture: females gathering at the water fountain, the well, or at natural meeting places along the river ... Fetch water, wash the clothes, and exchange informations and evaluations. The point of departure for their conversation will often be concrete acts and situations. These are described, compared to similar occurrences in the past and somewhere else, and evaluated - right or wrong, beautiful or ugly, strong or weak. Slowly, but far from always, some common understanding of the occurrences might emerge. This is a process whereby norms are created. It is a classical case of 'equalitarian justice'.

... The water well is abolished. We had in modernized countries for a while some small shops with coin-operated Laundromats where we could come with our dirty linen and leave with clean ones. In the intervals, there was some time to talk. Now the Laundromats are gone ... Huge shopping malls might give some opportunities for encounters, but mostly they are too large to find the old acquaintances and too busy and crowded for the prolonged chats needed to establish standards for behaviour ...”.

While traditional meeting places are disappearing or losing in importance, civil society represents a public space for debating norms, for confrontation and negotiation of   values. This process is greatly enhanced by the development and rapid diffusion of the modern information and communication technology fostering civil society’s cognitive praxis. The latter encompasses the creation and diffusion of social information and knowledge, as well as processes of problem definition, persuasion and action mobilisation (cf. Eyerman and Jamison, 1991). These often take the form of public debates involving individual citizens, NGOs, mass media, business corporations, political parties and governments. In fact, important issues are usually raised by NGOs. Or, as Beck (1994) says, “… the themes of the future, which are now on everyone’s lips, have not originated from the farsightedness of the rulers or from the struggle in parliament – and certainly not from the cathedrals of power in business, science and the state”. Having in mind issues concerning whole collectivities or even the global community, it is not difficult to realise that our ideas concerning environment protection, human rights, genetic manipulation and other things have changed, or are changing, because local and global voluntary organisations are challenging us to reflect on these, offering at the same time information and knowledge, propagating responsible solutions of the problems under discussion.

Education, learning, debating, precipitation of values and norms, the creation and diffusion of social knowledge and information come down to interactive communication, to processes in which participants create and share information with one another in order to reach a mutual understanding (Rogers, 1995). ‘Mutual understanding’ might suggest something like forgiveness or friendship, which is not necessarily the outcome of communication. Communication in this sense refers to processes in which people try to understand what is going on in their environment, to the interpretations of what they perceive, to the giving of meanings to certain events. Such processes often take place in informal networks consisting of family, friends, and neighbours. There are, however, more institutionalised networks and networks in which communication is even highly formalised. In other words, such networks display a certain degree of structure, of stability. Civil society comprises both types of patterned flows of information that interconnect individuals. Each of these is focal in his or her personal network and participates simultaneously in other networks. In this way, individuals form links between networks. In some personal networks are more ingrown. Such networks are called interlocking as all individuals interact with each other. Other networks are characterised as radial because they are more open; allowing the focal individual to exchange information with a wider environment.

Freedom of association is a precondition to the growth of radial networks. The suppression of civil society in the communist era went with the de facto abolishment of this freedom resulting in a significant reduction of such networks. Consequently, communication in the above-described sense occurred more in inwardly oriented interlocking networks. In addition, there were no public debates and there was no free press. At the same time, the communist rulers have invested much in propaganda in order to influence the people’s thinking and acting. In the end, the effects of all these efforts were limited. After all, the Czechs, Hungarians, Poles and others have liberated themselves from dictatorship. Nevertheless, as it also appears from the SOFT case, much harm has been done. According to Göncz (1997) “the greatest harm was done to the mind and soul. The conscience, the mind, and the ability of the whole society to function in unison must be revitalized”.

Backgrounds of the SOFT case

Motivated by their alarming experiences during a visit to a residential home for multiple handicapped children in east Hungary, in 1991 Dutch professionals working in the field of disabled children established the SOFT Tulip Foundation. Its aim was the improvement of the health care and of the living conditions of handicapped children in Hungary, particularly in its relatively underdeveloped and poor eastern part. The SOFT Tulip Foundation worked together with its sister organisation, the Hungarian SOFT Foundation. The latter has been called into being by Hungarian colleagues who were aware of the acuteness of the situation and who wanted to do something about it.

The establishment of an NGO like the SOFT Foundation became possible because the communist system has collapsed in Hungary. This went with the revival of civil society and in those days many NGOs and associations came into being. The relatively rapid rebirth of civil society in this country is at least partly explainable by the fact that prior to the communist dictatorship there was a rich associational life, whose roots survived the oppression. It was remarkable that people caring for disabled or working with them were among the first to create civil organisations (Göncz, 1997) partly because the living conditions of the disabled were apt to improvement already before the collapse of communism, partly because the revolutionary developments have been accompanied by, among other things, institutional disintegration which affected negatively the health care system. The role played by NGOs for the disabled in the revival of civil society was remarkable but not unique in the history. In his path breaking study of voluntary associations assisting people with disabilities in the United States, England, Israel and the Netherlands, Kramer (1981) points out that for instance in England voluntary associations were pioneers in serving the physically and mentally disabled during the nineteenth century, when governments were either unwilling or unable to accept responsibilities in this field. Later on, the welfare state took over functions that originally have been fulfilled by NGOs. Around the mid of the last century, however, parents of mentally handicapped children began to organise community facilities for their children, pressing the government to expand and improve services for them. Since neo-liberal ideology became dominant, governments exert themselves to shift responsibilities as much as possible to NGOs.

Differences

Turning back to the establishment of the two SOFT foundations, it should be noticed that this resulted in a for those days rather uncommon network consisting of people belonging to different cultures at least in a double sense. In addition to the differences in national culture, there were differences in habits, attitudes and competencies caused by diverging life experiences gathered respectively in a democratic and in a totalitarian country. A major difference consisted in networking competencies. While for the Dutch it was just usual to undertake autonomously joint activities, to gather information and to seek co-operation in the radial way, in Hungary, as  Göncz (1997) says, many generations who came to maturity in communist times still had to learn to join with other people to solve problems. Anyhow, the cultural differences in both senses caused from time to time complications, but the partners in both countries were motivated, and the challenges they were facing together helped them to tolerate the differences, to learn to co-operate and to surmount arising difficulties.

Their common efforts had two main dimensions, to wit the improvement of the health care and living conditions of disabled children in residential homes and in families that were caring such children at home.

During the communist era, policies concerning handicapped were characterised by social exclusion. Handicapped children and youngsters were often hided in institutions outside community centres. These institutions were poorly equipped and the level of provided care was low. For example, in the 1990s the present author paid a visit to such an institution located just outside a small village near by the Ukrainian border. It was accommodated in former barracks built shortly after the First World War to house young soldiers capable to endure harsh living conditions. Thus, the accommodation was anything but tailored to the needs of handicapped children and youngsters. The barracks were, moreover, surrounded by barbed wire because its inhabitants were considered as dangerous. It must be added that, as an outcome of the Dutch-Hungarian co-operation, the facilities in this residential home have been improved and the barbed wire has been removed. At the time of the visit, the integration of the young residents in local community has already got going. The villagers have discovered that the barracks’ mentally handicapped inhabitants were just different. Their original aversion acquired by socialisation has given way to understanding and acceptance. Many of the handicapped youngsters worked regularly basis with the peasants, and some of them were even invited on Sundays to have meal with the peasants’  families.

Research

The aversion among the villagers to the barracks’ residents was not a local peculiarity. As an outcome of the policy of social exclusion, there was in the whole country a low societal acceptance of handicapped and disabled people, regardless whether they were children or grown ups. Because civil society has been suppressed, there were no NGOs combating the exclusion of the disabled and protecting their interests. For the same reason, there were no associations of parents of disabled children fulfilling such functions. The parents themselves were experiencing the lack of social tolerance and acceptance, particularly those who were caring for their children at home. This is apparent also from the outcomes of a research project concerning 3.200 families with disabled children at home. The project has been initiated by the Hungarian SOFT Foundation and realised in 1994-1995.

Discussing this survey, the sociologist Béres (1997) remarks that to raise a child with a handicap requires a considerably greater amount of time, patience, psychological and physical energy on the part of the parents than in the case of an average child. It might be expected, therefore, that the parents in the survey would emphasise this kind of difficulties in caring for a child with disabilities. However, the most respondents (26.5%) stressed in the first place financial problems they were facing. Next to this came the lack of social tolerance and acceptance of the disabled (10.6%), whereas 6.4% of the responding parents signalled deficiencies of services in connection with children with disabilities. That the responding parents mentioned financial problems in the first place, could be no surprise for the researchers because the standard of living was low already before the collapse of the communist system. Besides, the transition to democracy and free market economy was in those years accompanied by an economic crisis and growing unemployment. The biggest part of the population was hardly hit by these, and the pauperisation was alarming (Ners and Buxell, 1995). The situation has been aggravated by the introduction of neo-liberal policies aiming at the reduction of state expenditures. As far as social policy was concerned, according to Tausz (1997), this resulted in a division of society. Those with substantial incomes could purchase welfare services in the market system. At the same time, masses of people found themselves impoverished and vulnerable.

Overlooking the survey’s outcomes, Béres points out that improvement of the situation of the disabled children is not exclusively a matter of financial assistance. Fostering co-operation among parents raising children with disabilities, increasing their capacity to provide self-help, and strengthening protective services could in his view fundamentally improve the conditions for children with disabilities as well as for their families.

Co-operation

The boards of the Netherlands SOFT Tulip Foundation and of the Hungarian SOFT Foundation were of similar opinion. In fact, the first one has realised from the beginning on that financial and material assistance were indispensable, but not enough. Sustainable development of the health care and welfare services in behalf of disabled children presupposed changing attitudes as well as the acquirement of core competencies by professionals and volunteers alike.

In view of the poor condition of institutions in behalf of disabled children, during the first couple of years of the SOFT-SOFT co-operation, the emphasis lied on financial and material assistance. Subsequently, the improvement of professional competencies has been accentuated. Gradually more and more attention has been paid to the education of adults to cope more effectively with the problems related to their disabled children and to empower them in such a way that they could organise themselves, also strengthening in this way civil society. Because of rapid and profound changes in the environment also due to Hungary’s efforts to join the European Union, more recently strategic management of NGOs and institutions has been put on the common agenda.  

Since the start of the bilateral co-operation, SOFT Tulip succeeded in providing hospital and other special equipment, furniture, computers and peripheral devices, etc. In the Netherlands, it was enabled to help by De Open Ankh, an organisation of non-governmental institutions in behalf of the disabled with which SOFT Tulip is associated. At the same time, the Hungarian SOFT Foundation worked on the improvement of the rehabilitation of disabled children and on the education of professionals, volunteers and parents. Doing so, it has gathered considerable experience in the creation of learning environments, lobbying, fund raising and in attracting the attention of mass media.

In the course of time, also study trips to the Netherlands for Hungarian professionals, volunteers and for parents of disabled children have been organised in order to enable them to learn more about the way in which problems related to disabled were dealt with, about the Dutch care system and about the functioning of institutions for the disabled. With the financial assistance of the Dutch government, SOFT Tulip in co-operation with its Hungarian sister foundation has organised training periods in the Netherlands for middle cadre employees of Hungarian institutions. As it appeared from the evaluations, the trainees were mostly impressed by the differences in culture of the involved Hungarian and Dutch institutions. A component of this culture was the empathetic attitude of nurses, therapists and medical staff towards disabled children. Another component was the atmosphere within the organisation. This was partly due to a more democratic leadership style, partly to the fact that the Dutch colleagues interacted as motivated, autonomous and co-operative partners.

Unfortunately, the impact of this training programme on the home institutions of the trainees could not be measured. On the base of informal talks, it seems safe to say that they act as change agents. Anyhow, they belong to a network that has arised in the course of the SOFT-SOFT co-operation. This network consists of individuals who in one way or in another became involved in this co-operation and have learned to trust each other and to work together.

Projects

With regard to the SOFT-SOFT co-operation, two projects deserve particular attention because these have enhanced in a relatively high measure the development of the SOFT network. The first is usually called the Matra project while the second is named as the Intepnet project. The two SOFT Foundations developed both.

Matra is the acronym of a programme of the Netherlands government to contribute to the strengthening of democracy and civil society in the post-communist countries. Within this framework, the Netherlands government financially supported the two SOFT foundations to further the self-organisation of parents of disabled children in Hungary (cf. Katus, 1997). The motives of this project have been stipulated above. Among its more specific goals were the

·          fostering the development of voluntary associations of parents in order to stimulate their capacity to cope with the problems related to raising children with disabilities;

·          development of helping networks of parents of disabled children and of other people involved in this sector;

·          creation, transfer and diffusion of knowledge related to adequate care of children with disabilities;

·          acquirement of competences by the parents necessary to mobilise effectively public support to local and state government policies concerning disabled children;

·          acquirement of competencies by the parents to negotiate as well as to co-operate with local and state authorities;

·          fostering of public awareness and education of the people with regard to the problems of children with disabilities.

The Matra project has been satisfactory realised in the mid 90s and it has stimulated the establishment of voluntary associations of parents particularly in eastern Hungary. The several activities in its framework have attracted the attention of parents and professionals abroad, especially in Romania. This resulted in mutual contacts and, later on, in the Dutch-Hungarian-Romanian Intepnet project that has been implemented in 2000-2001 with the financial support of the European Union.

An interesting feature of this tripartite co-operation was that in its development a principle has been taken into account that is known in the research literature on the diffusion of innovation as homophily, being the degree to which two or more individuals who interact are similar in certain attributes (Rogers, 1995). According to this principle, the transfer of ideas occurs most frequently and effectively between individuals who are homophilous. Which means that when certain people share common language, common meanings, and are alike in personal and social characteristic, the communication is likely to have greater effects in terms of knowledge gain, attitude formation and change, and also in overt behaviour change. Ethnic Hungarians living on the other side of the Hungarian-Romanian border matched many of these criteria. In addition, as members of an ethnic minority, they were familiar with the culture of the ethnic majority of Romanians. Therefore, they could facilitate communication and function as linkages in communication networks to be developed in Romania.

The Intepnet project has been realised in co-operation with the local Caritas organisation in Satu Mare, not far from the Hungarian border. Intepnet is an acronym of International Training of Experts and Parents of children and youngsters with disabilities for Network-building and Co-operation.  The full name indicates that the project’s main aim was furthering the development of networks in Hungary and Romania. It also indicates that in the course of the SOFT-SOFT co-operation it has been recognised that networks are essential to the development of governmental and non-governmental services for children and young adults with disabilities. However, although in the mean time many voluntary associations were called into being, such networks were lacking. In the above-stipulated approach of Fukuyama (2002), this can be interpreted as a growth of the number of co-operative groups, whose average radius of trust still remained, however, relatively small. This was even more the case in Romanian than in Hungary. Since the fall of the dictatorial Ceauşescu regime in 1989, there were considerable, though far not satisfactory, changes in taking care of disabled children (Katus, Kósa and Vekerdy, 2001). The legislation was not yet sufficiently tuned to changed conditions; the communication and co-operation within de care system was not adequate; professional assistance was inadequate because during the Ceauşescu regime there no professional training was lacking in the field of assisting professions (education of the handicapped, psychology, social work, sociology, etc.); civil society was weak and mutual tensions and frustration occurred between civil organisations and the state as well as local governments; at last but not least competences were lacking which are necessary to articulate the needs of the disabled on individual, family and local levels and to safeguard effectively their interests.

Against these backgrounds, the most important goals of the Intepnet project were furthering the competences of those parents, volunteers and professionals who were actively involved in network building as well as the transfer of expert knowledge to professionals.

The different project activities took place during 24 months. As evaluations by the participants show, the project has been satisfactory implemented involving about 1000 families in 13 communities in Hungary and 4 communities in Romania. Besides families, 1000 – 1500 care professionals benefited from it. In training programmes, nearly 450 professionals and parents (250 from Hungary and 200 from Romania) were involved directly. Meeting people who face similar problems, learning together and from each other have stimulated the acquirement of relevant competences as well as changes in attitudes that influence networking.

Federation

The measure in which the project enhanced the radius of trust of the involved co-operative groups, as Fukuyama calls it, is indicated by the decision to continue the co-operation that started within the project’s framework. In view of this, at the closing conference a Declaration of Intent has been issued and subsequently signed by 28 NGOs from Hungary, the Netherlands, Romania and Ukraine. The declaration envisaged the establishment of a federation of NGOs working for or with disabled children and young adults. In 2002, an International SOFT Federation (ISF) has been established, having an international board and Hungary as the chosen domicile of its secretariat.

Since its establishment, ISF looks for ways and means to fulfil its mission. It organises annually international assemblies. Within their framework info markets offer the participating member organisations to inform each about their activities and achievements. At the same time topical conferences are held to foster the exchange and diffusion of knowledge and information. Until now, such assemblies have been held in Hungary and in Romania. The next assembly will take place in October 2006 in Ukraine. In this country, life is very hard for people with disabilities, since society’s attitude has not changed much since Soviet times, when the disabled were looked upon as inferior and ‘defective’. Disabled people are subject to stigmatization, excluded from school or the workplace, and often end up depending on others in the family and community for physical, social and economic support. Due to poverty and to the lack of social capital, combating social exclusion is extremely difficult. In Ukraine, the majority of the population perceive themselves as poor, and in fact has relatively low incomes. At the same time, the State’s expenditures on public health, education and other social welfare are well below European levels.

Educational Centre

Presently, ISF is working on the creation of an Educational Centre (ISFEC). It has been called into being by the general assembly held on 2 October 2004 in Satu Mare, Romania.ISFEC aims at answering the educational needs of professionals and volunteers working with or in behalf of disabled children and young adults in East Central and Eastern Europe. In view of this, on the base of apparent needs ISFEC develops and implements educational programs to improve the competencies of specific target groups. These target groups encompass volunteers, parents of disabled children, medical professionals, employees of NGOs and health care institutions, etc. Doing so, ISFEC co-operates with relevant organisations and institutions.