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Inclusion: theory and practice
The paper below is slightly emended from a chapter published in: J. Vartola, F. Hossain, T.N. Dhakal & M. Ulvila (eds) (2000) Development NGOs Facing the 21st Century. Perspectives from South Asia, pp. 149-64. Kathmandu: Institute for Human Development.
M. Miles. Birmingham, UK
m99miles@hotmail.com
This chapter reviews contrasting development patterns of 'Disability NGOs' (i.e. Non Government Organisations concerned with disablement) in Pakistan and Bangladesh, two nations with some political, cultural and socio-economic similarities. After sketching the historical background, the focus will be on service organisations for people with learning difficulty/disability or (as it is often known in South Asia) Mental Retardation (MR), from the early 1980s to mid 1990s, a period during which those NGOs expanded, mostly with foreign assistance.
In Pakistan several small, autonomous NGOs worked locally and provincially, often centred on particular schools or service units. Some practical collaboration took place, but the NGOs were often in mutual competition for resources and renown. As the number of NGOs increased, repeated efforts were made to achieve a Pakistan-wide platform and coordination, but geographical factors and friction between various participating groups and viewpoints prevented any lasting success.
In Bangladesh, centralisation of power took place very early in the development process, under a single national MR organisation which then spread its branches across the country, heavily supported by Nordic aid; yet this monopoly was also challenged, allowing a variety of grassroots responses to children and adults with MR. Comparisons of the divergent development patterns in Pakistan and Bangladesh cannot be exact, because of many unmeasurable factors. Nevertheless, some experiences common to the NGOs in both countries suggest that neither development pattern is inherently superior.
The literature of South Asian antiquity provides fascinating but inconclusive glimpses of a range of individual and communal practices in welfare assistance to disabled people. [1] Best known are the centralized arrangements whereby the ruler of a city or region was responsible for providing food and shelter to `the sick, the lame, the blind', either permanently or by special arrangement during famines or natural catastrophes. Thus Draupadi, the archetypal wife of the Pandavas, was seen daily serving all her company "including even the deformed and the dwarfs" (Mahabharata, Sabha Parva 51).
In various Ramayana versions, employment of hunchbacked servants at court reflected an apparently widespread practice. Yet the traditional celebration of philanthropy by the nobility may divert attention from the ordinary householder obligation to provide for the needy person who begged food at the door, a duty enjoined from Vedic times and perhaps responsible for a much wider charitable support to disabled people than any courtly efforts.
Civil Society. Somewhere between the court and the individual household there were indications of civil society in the self-organised groups that undertook socially beneficial activities of their own choosing. Some Jataka stories suggest that groups of families or maybe a whole street of householders, or a trade guild, might act together to feed needy people. From early Buddhist and Jaina sources two further long-lasting traditions emerged. One was the community-supported monastic practice of giving asylum to some disabled children who then grew up with a religious education and some practical skills, such as music-making, by which they might become self-supporting. In sharp contrast were the practices embodied in the strangely modern-sounding legend of Manimekhalai, the pretty young social worker with a high media profile, surrounded by a throng of blind, lame, decrepit and hungry people on whom she scattered her semi-organised beneficence (Daniélou & Gopala Ayer, 1993).
The rise of Muslim power particularly across North India seems to have made little practical difference to the various traditional forms of charity. Some Muslim rulers created charitable institutions, while Muslim communities had their bait-ul-mal or community chest for relieving poverty and their auqaf trusts for perpetuating benevolence (or for avoiding taxation) (Rashid, 1978; Kozlowski, 1995). Certain occupations became the preserve of blind men, e.g. memorising and declaiming the Qur'an, while deaf men traditionally became tailors. The small numbers of Europeans arriving from the 16th century also made little difference during their first two centuries, as they slowly developed measures to care for their own disabled or needy people.
NGO welfare activities on a larger scale can be documented from early 19th century Bengal onward. Growing numbers of British merchants, soldiers and East India Company officials consolidating their grip on ever larger parts of North India began to discover that governmental power secured 'for the purpose of trade' could not altogether be divorced from the welfare obligations traditionally associated with rulers. Printing presses were increasingly used to create and mould public (i.e. literate) opinion among both European and Indian educated classes, and to highlight moral demands upon them, an essential ingredient for the nascent conscience of civil society. NGOs to promote education and welfare began with Europeans in charge and some wealthy Indian collaborators, but within a few years the balance shifted and Indians created their own NGOs for a wide range of social purposes.
Some of the wealthier Indians, after studying the psychology of their foreign rulers, could afford to give the latter a few public lessons in humility. The British could be upstaged simply by colossal donations, as when "Dwarakanath Tagore made a startling announcement of a big donation of Rs.100,000 to the [District Charitable] Society in 1838. ... The Europeans were naturally stunned, and so were the Indians." (Sanyal, 1977, pp. 105-106). Still more pointed was the "Hospital for poor Europeans" erected by Babu Guru Das Mittra, a Bengali leader at Benares (Sherring, 1875, p. 82) Wealthy Indian businessmen tended to avoid all such ironies and were assiduous supporters of 'progressive' British-led charities; yet simultaneously they supported traditional charitable approaches of the sort that the British reformers were trying to replace (Haynes, 1987).
Disability Welfare. NGOs benefitting disabled people originated probably in the 1810s with public efforts to start a leprosy asylum at Calcutta. A longer-lasting initiative was the opening of Raja Kali Shankar Ghosal's Blind Asylum at Benares in 1826, involving the Raja as a concerned individual, his researchers who enumerated the local blind people, a group of British officials as trustees, some East India Company funds, some private and civic subscriptions, many people subsequently taking an interest in the blind residents, and eventually some special educational provisions in the 1860s by European missionaries. In these activities at Benares no single modern-style constitutional NGO is clearly identifiable, yet a range of charitable and educational actions occurred that were done neither by an individual nor by government, but by community action.
Nineteenth century India also saw some trends and movements that slowly generated knowledge about child learning and development, kindergartens, progressive pedagogy and legal measures concerned with mental incapacity. An Idiot Asylum flourished in the 1840s and 1850s at Madras, in which experience was gained of occupational therapy with mentally retarded people. The first half of the 20th century added the development of psychological testing, measurements of mental abilities, school health services, formal classes for 'idiots' in mental hospitals, and a growing concern for children who attended ordinary schools but who learnt very slowly if at all (Miles, 1998a, 1998b).
It was not until the 1960s, however, that parental concerns for such children extended beyond the privacy of the family and issued in NGOs that would battle in the public arena. By this period, there had already been much more substantial experience of concerted South Asian voluntary welfare action, as for example by the Arya Samaj and the Ramakrishna Mission, followed by Gokhale's Servants of India Society, the Bengal Social Service League, Gandhi's paternalistic Harijan Sevak Sangh, and the grassroots efforts of Cooperative Societies (Strickland, 1939, especially pp. 317-340, 380-392). The possibilities of large NGOs with centralised power acting through dispersed branches, as against small, locally responsive NGOs acting in loose-knit confederations, were recognised as alternative development paths in the earlier 20th century.
The first NGOs concerned with MR in Pakistan were initiated largely by the efforts of fathers having mentally retarded children in collaboration with a few other concerned people. This repeated the pattern of an earlier movement by parents of deaf children in the 1940s to press for services, which resulted in the formation of a Deaf and Dumb Welfare Society at Lahore in 1949, followed by the opening of a special school (Makhdum, 1961, pp. 6-7). The first MR pioneer, Mr A.S. Muslim, began in classic fashion with a letter in the major Urdu and English newspapers in 1959, stating that he had a mentally retarded child and did not know where to find help. Replies poured in from far and near, and in 1960 he founded SCINOSA, the Society for Children in Need of Special Attention, with an elected governing body of two physicians, a lawyer, a social worker, a retired senior civil servant and a businessman, three of them being fathers of disabled children.
Muslim has described with some bitterness the lack of interest or attempted dissuasion by some senior professionals whom he consulted in Karachi. He took encouragement from seeing a centre at Bombay run by Mrs Jai Vakeel, who later provided the constitution of her society as a model for SCINOSA. Eventually Muslim patterned his activities on work that he visited during a business trip to Norway, and in 1962 a similar day centre was opened at Karachi for his own son and others like him. SCINOSA started with practically no funds, equipment or accommodation, but Muslim and his co-workers begged here and there for cash and volunteer help and meanwhile began daily work with the children who were the intended beneficiaries (Muslim, 1993, pp. 58-89). The actual schooling was amateurish at the start, but staff gained experience as they went along and some ideas and equipment were borrowed from the Montessori movement.
The Karachi experiences helped another parent of a mentally retarded child, West Pakistan's former Auditor-General Syed Yaqoob Shah, at Lahore. With others, he formed an NGO called the West Pakistan Society for the Welfare of Mentally Retarded Children, and the centre Amin Maktab was opened in 1962, also with some difficulties (Pakistan Society, 1993). In Pakistan's third major city, Mr Bhandara, who had a mentally retarded son and owned Pakistan's main brewery, was a leading figure in the third NGO to open a special school. Bhandara (1971) introduced the work as "a Society for Mentally Handicapped Children which was established in a small room in Satellite Town, Rawalpindi, by a devoted Social Worker Lady Miss Julia Riggs with the help and assistance of some Pakistani and Foreign ladies in Jan. 1970. A School under the auspices of the Society was subsequently started on a very small scale. ... At present there are about 20 children in the school."
In addition to these schools or day-centres managed by small, local NGOs with a progressive, educational outlook, one residential institution was opened at Karachi in 1969 by a Dutch nun (whose own sister in the Netherlands had Down's syndrome) for children considered to have profound or multiple handicaps. This became the only place in Pakistan where several score of families could permanently deposit children with severe disabilities to be 'cared for'.
A fifth initiative, in 1974, followed a slightly more complicated path. The Mental Health Centre (MHC), Peshawar, already existed as a psychiatric centre founded by John Bavington in 1971 under the Church of Pakistan. An urban playgroup was begun for mentally retarded children and their mothers by Caroline Currer, Frede Hansen and Judith Randall with Pakistani trainee teachers, and this later developed into a school and resource centre. The Frontier Association for the Mentally Handicapped (FAMH) was set up to provide for membership and campaigning activities, without having a direct role in the playgroup and later school, whether as fundraising body or management committee, as the latter functions were undertaken by the MHC.
NGO Registration. These early NGOs and later ones went through a cumbersome process of formulating a constitution and getting registered with the Provincial Department of Social Welfare, on a pattern derived from Societies Registration laws enacted by the British Indian government in the 1860s and hardly changed since then. These provisions aimed to give a legal framework, some democratic checks and balances, a turn-over of officers by regular elections, and a closely controlled financial accountability. In practice the rules and regulations seemed poorly adapted to the actual situations of NGOs in the 1960s or subsequently. Some NGOs have ignored them completely, while others have spent time and ingenuity on complying with the absolute minimum of requirements.
The conception of the model NGO constitution was, and still is, alien to the culture of Pakistan, in which the long traditions of charitable effort followed an Islamic pattern of predominantly individual and family benevolence rather than a group cooperative pattern (Stillman, 1975). NGO constitutions were noticed only when a quarrel had broken out and dissident members hired a lawyer and obtained a court order stopping all proceedings on the grounds that no proper elections had been held, no accounts produced, etc. A study of the functioning of NGOs in the North-West Frontier Province (of which Peshawar is the capital) found that it was "a serious shortcoming of the voluntary welfare societies", that with a few exceptions they seemed to be "managed year in year out by the same persons irrespective of their organising ability", and that this monopolisation caused them to "look like private concerns", to the extent that people were "bound to become suspicious of their real purpose" (Khan, 1972, p. 74). The observation was and is undoubtedly accurate, reflecting a situation to be found in many countries. Whether it is a serious shortcoming of the NGOs, or merely a reflection of development realities, has not so clearly been demonstrated.
The present author, who ran the Mental Health Centre, Peshawar, from 1978 to 1990 and was the active officer of the FAMH through that period, tried to comply with at least the minimum of constitutional requirements, keeping accounts, maintaining a list of paid-up members, notifying them of the Annual General Meeting and elections etc. In practice however the active membership consisted of the same three or four people throughout the 1980s, and a small number of others consented to their names appearing as 'sleeping officers'. The active Pakistani participants, one being a senior lawyer, viewed with kindly amusement their foreign colleague's efforts to keep within the rules, which none of them took seriously.
Public Meetings. In its earlier years, the FAMH was 'sponsored' by the local Rotary Club, whose members cooperated whenever a formal meeting was legally required. Later, parents or close relatives of some 40-45 children attending the MHC day school were deemed to be honorary FAMH members, the school fees counting in lieu of their subscription. A good attendance could thus be achieved at a public meeting (without hiring students to pack the hall); but practically none of these people was actually a paid-up, voting member. The FAMH AGM was combined with a meeting of parents, children and MHC staff, held in the nearby Edwardes College grounds, where the children had space to play and quantities of food and drink could be eaten or spilt on the floor without much problem. These events were much appreciated by parents and children. Periodically an 'issue' was presented to them for a democratic expression of their views; but the biennial elections were held at a different time. The FAMH thus served as an artificial construction, with an identity and legal basis usefully separate from that of the MHC. (The latter suffered the triple stigma of association with 'madness', with foreigners, and with the Church of Pakistan, most of whose members were from the poorest socio-economic stratum.)
The very small active FAMH membership included two or three well-respected Muslim professionals, one having a mentally retarded child, who understood the usefulness of maintaining separate fronts for different purposes. They also understood very well that if we were trying to mobilise substantial resources in order to develop innovative services for much larger numbers of disabled children, there was little to be gained by encouraging the public at large, or parents mainly concerned for their own child, to join up and take control of the organisation.
During the 1980s the Federal Government was trying to spend money on disabled children, and the FAMH could easily show the necessary documentation in order to receive a grant, whereas the structure of the MHC (which was largely funded from abroad) would have been more difficult to accommodate within official rules. One government grant resulted in the FAMH providing a vehicle and driver for pick and drop of some of the MHC school children, over many years, which meant that it could also prove that it was 'providing a service' to the expected beneficiaries.
Development Project. A more substantial initiative run nominally under the FAMH, with the MHC school as resource centre and training base, was the FAMH/UNICEF Community Rehabilitation Development Project, which ran from 1982 to 1987 and mobilised people in ten other large Frontier towns and cities (populations between 40,000 and 150,000) to form locally autonomous NGOs to start some work of their own choosing, in their own town and vicinity, for the benefit of disabled children. The usual expectation would have been for the FAMH, as the provincial 'parent body', to treat all these local associations as its branches, and to sit on top of the pyramid, enjoying power and controlling whatever finances could be raised. It could have been a wonderful little rehabilitation empire; but our development experience from 1978-1982 suggested that the few local people who might be interested in this sort of voluntary work would do it with energy and devotion only if they were managing their own affairs and solving their own problems.
Our theory was that local people were most likely to know, or to find out, answers to questions such as: who and where were the disabled children in their town, what services should be provided for them, who were the influential people, how could some accommodation be found, what sources of funds might there be, who could be given some training and then employed in a little school, or physical therapy centre, or cottage industry training scheme? The only essential thing not available in these towns and cities was specialised knowledge of what to do with disabled children, in terms of special teaching, physical therapy, helping some of them into ordinary schools, providing assistive devices. For this, we made arrangements to give training at the MHC for several months, to young employees sent by the local NGOs created through the development project.
These new local NGOs were mobilised in various ways and functioned in different ways, but there was always a core of two or three people who really ran things. Some were a little more democratic than others, but the central people tended to keep a close grip on whatever they achieved. This was a necessary precaution. One man who had visited families, collected money and worked hard to start a small school, but did not keep a tight grip on the reins, suffered an attempted 'election ambush'. Several members, wishing to harvest the fruit of this man's hard work, paid the small membership subscriptions to enrol 30 students, who should vote them onto the controlling committee. This attempt was fended off with some difficulty.
Some of the active people had a disabled child, some perhaps wanted the fame and kudos of being 'social workers', some were born organisers and were already running other community activities to which a little disability work was an attractive new feature. The UNICEF office, which was understaffed and in permanent crisis, introduced a different motivation when it gave out vehicles and physiotherapy equipment to some of the local leaders. The original idea had been that the vehicles' purposes and usage should be closely controlled; but UNICEF was not a development agency and gave little thought to the effects of its bounty - the overriding duty was simply to spend its budget each year, regardless of after-effects.
Government grants. The Federal Government was also keen to bestow funds on these new, small NGOs, because General Zia ul Haq, himself the father of a disabled child, wanted something done for disabled people while he was in power. Some Federal grants were well directed, others were inadvertently destructive. A grant of Rs.100,000/-, not a small sum in the 1980s, intended to encourage a hard-working disability NGO in one town, accidentally went to a moribund NGO in a town of a similar-sounding name. Two years later, both NGOs had ceased to function. It was a curious period, in which various INGOs and governments were desperate to spend money on disabled people, short of taking it out in bags and giving it to beggars in the bazar; but the NGO capacity to absorb money quickly and use it to develop appropriate services hardly matched the available cash. By the time the skills and capacity had developed, of course the bonanza had ended.
The MHC's role as a resource and mobilisation centre, providing training, information and encouragement, severely stretched its capacities; yet at least the newer NGOs came to understand that the responsibility for success or failure in their own town really depended on their own efforts. Eventually, they were able to think about helping one another, and even going out to the surrounding rural areas (Peters & Rehman, 1988).
Across Pakistan more NGOs concerned with MR emerged during the 1980s, mostly running a special school or centre. From six NGOs at the end of the 1970s, there were around thirty by 1990. Among these, three or four, like the FAMH, had a province-wide reach and were strong enough to arrange conferences or training activity which others across the country could attend. From the mid-1980s onward, various efforts have been made to create a national forum that could speak with one voice and represent MR concerns to the government. For various reasons, none of these efforts succeeded.
Geographical problems. The geography of Pakistan is such that the mega-city of Karachi, with nearly half of the MR services, is separated from the heavily populated Punjab by several hundred miles of near-desert. MR activists in the North West Frontier and the Punjab could meet together at Lahore or Islamabad without excessive expense, but were reluctant to make the long trip to Karachi unless an airfare was provided. Karachi activists were unwilling to visit the north at their own expense. Only the Federal Government had sufficient funds to pay for a national meeting - but when it did so, naturally it had its own agenda and was not particularly concerned to foster a national MR organisation (which would certainly come with heavy demands for ongoing budgets, without providing disabled people with any direct services of the sort that create goodwill for the government).
Furthermore, for years the major MR NGOs had been in competition with one another for funding, trained staff, foreign assistance, and the image of being angels of mercy. Most of the key players could cooperate with one another at the occasional Federal Government meeting, but underneath there was a heavy backlog of mistrust and suspicion, sometimes exacerbated by parent/professional differences of viewpoint, sometimes by psychiatrist/psychologist differences, and other such irritants. Several major NGOs had taken up associate membership of the International League of Societies for the Mentally Handicapped, but none could achieve full membership with voting rights because that was available only to national organisations. One Karachi NGO was a member of the Asian Federation for the Mentally Retarded and exclusively represented Pakistan at the biennial meeting of this Federation.
Competition. The foreign trips, competition for kudos and rumours of huge grants acquired from gullible foreign organisations, militated against cooperative activities and policy inputs on the national level. These various factors probably also reduced the effectiveness of all the NGOs in serving and advocating on behalf of mentally retarded people. However, it is not easy to prove any of these disadvantages. To have room and freedom to run one's own show, and to do so with some element of competitiveness, are powerful motivating factors. There is also more accumulation of experience and consistency of policy in NGOs that are run for many years by the same people, as compared with the sometimes rapid turnover of officers in more democratic systems.
The best balance between new blood with fresh ideas, and old hands with solid experience, is seldom easy to achieve. No doubt the leaders of disability service NGOs ought to be saints with the purest motives and endless energy. In real life they/we seldom achieve sainthood, but are more likely to burn out and become difficult and demanding, while resenting and obstructing the work of the next generation of activists. It is perhaps enough if an NGO can achieve some development of resources, some activities, some education, some public awareness, where there was none before; and can demonstrate on the small scale some patterns of service development that invite government incorporation on a national scale. The achievement of such modest goals by Pakistan's MR NGOs was slowly but increasingly observable between 1960 and the mid-1990s.
By the late 1980s the Federal Government had indeed adopted some of the approaches pioneered by NGOs, so that government officers have begun to build up their own experience of service provision, along with channels for parent participation. Foreign aid (and interference) played a significant part, with activity by VSO and the Peace Corps, British, American, German, Nordic, Japanese, Korean and Australian professionals and advisors, some overseas training, some import of equipment and methods. Perhaps the range and conflict of foreign viewpoints contributed to developing sophistication among Pakistani counterparts. A survey of MR field leaders in 1990 asked (among other questions) about the extent of importation of foreign ideas and methods, and whether there had been sufficient adaptation to Pakistan's cultures. Responses on this were very mixed, almost equal numbers thinking that there was an appropriate East-West blend, that Western ideas were too prominent, and that more Western contributions were needed (Miles, 1993).
Many of the cultural features affecting NGOs in Pakistan have been equally reflected in Bangladesh, and will not here be repeated. From 1947 to 1961 East Pakistan experienced joint nationhood with West Pakistan, though separated by 1,000 miles of Indian territory. Development of the East wing tended to be hampered by decisions taken far away in the West wing, which itself took many years to settle down after the traumas of Partition and the reception of very large numbers of Muslims leaving India. By the time the East wing fought and gained its independence as Bangladesh, it had rather fallen behind in terms of development, especially for those parts of the population that customarily had very low priority.
By the mid 1970s, major cities across the rest of the subcontinent each had at least one organisation and school for mentally retarded children. No such work was reported from Bangladesh, though there were and still are some very backward children casually integrated in ordinary schools (Begum, 1991). Finally in 1977 there were meetings in Dhaka among "the parents of the mentally retarded children, psychologists, psychiatrists and social workers who had been deliberating and exchanging views on the problems of mentally retarded children" (SCEMRB Report 1977-81, 1982, p. 10). These meetings led to the formation of the Society for Care and Education of Mentally Retarded, Bangladesh (SCEMRB) in December 1977, followed shortly afterwards by the opening of a special class for children with MR, in the grounds of an ordinary school.
Revising history. Later events, in particular a power struggle between parents and professionals, seem to have led to some revision of accounts of this NGO's earliest days. Thus in 1994 the President of SCEMRB asserted that, like the Nordic organisation with which it soon developed a partnership, SCEMRB was always "basically a Parents Organisation", and that although some professionals did get involved, "it basically retains the character of a parents' organization" (Barua, 1994). This view of its origins is contradicted by the First Report of SCEMRB covering 1977-1981, written by one of the founding parents, stating that
"At the time of the formation of the Society when its programmes and projects were adopted, the concept of parents associations and involvement of parents in the activities of the Society was not there. For the first time in our Second National Conference held in June, 1981 Mr Sigurd Gohli Secretary General of the Norwegian Association for the Mentally Retarded defined the concept of parents association and explained how parents could be involved in the various projects and programmes for the welfare of the retarded. Programmes and projects as envisaged in the original scheme of things were to be managed by the professionals under the guidance of the Society." (Ibid., p. 18)
By 1980, four special education classes had started, the fourth being for Dhaka slum children (SCEMRB Report 1977-81, pp. 18-19). The teachers were a mixture of young psychology graduates and mothers, some of the latter working without salary to start with. Guidance was provided by Dr Sultana Zaman, a senior psychologist, who played a key role in the early development of SCEMRB, and eventually left to form another NGO with a stronger research and development focus, the Bangladesh Protibondhi Foundation. The SCEMRB early years apparently saw much support from well-wishers and businesses in Dhaka, many donations of goods, time and money, including substantial amounts from the Government. The SCEMRB Report 1977-81 notes under the heading "Affiliated Bodies" that "The Society has affiliated similar Associations set up in Chittagong and Rajshahi." This 'affiliation' soon turned into 'assimilation', as large amounts of Nordic aid began to be channelled through SCEMRB at Dhaka.
Nordic aid and ideology. It thus appears that the earliest developments were fairly similar to those in Pakistan, though occurring some 15 years later; but change soon took place as a result of partnership with the Nordic NGO, which specialised in MR and which emphasized parent control. Instead of each city developing one or more independent NGOs concerned with MR, which would raise their own funds, run their own service centre and pursue their own goals, the main pattern that emerged in Bangladesh was to have one national NGO based in Dhaka, controlling branches which benefitted by substantial foreign aid via Dhaka. The aid partnership began in 1982, and by 1995 branches had extended to 36 towns or rural bases. Special classes and special schools were opened, vocational workshops were tried out, some success was achieved with agro-based rural training projects, and there is some ongoing extension with Government assistance, to provide more formal services.
Initially through the aid partnership, and later with extension by the efforts of the Bangladesh Protibondhi Foundation, the country has had access to a wide range of modern information about MR - the accumulated concepts, knowledge, skills and designs of modern Europe in this field. The accelerated development of branches, and large Nordic subsidy to professionals' salaries, has spread know-how to small towns across urban Bangladesh. Without the Nordic organisation's pressure and support, formal services and information would most probably have been confined still to the major cities, with perhaps one or two rural experiments. There are also now formal structures in place for professional training and support, through Nordic-aided training institutions established at or near Dhaka, and Dhaka University's Department of Special Education. Given the vast political, economic, social and cultural differences between Norway and Bangladesh, the absence of historical links between the countries, and the colossal difficulties and natural disasters experienced by Bangladesh throughout this period, the achievement has been substantial.
The sustainability of the whole exercise has remained uncertain however, given that Nordic aid could not be expected to continue indefinitely, and in fact had already begun to be cut back in the late 1990s. The issue concerns not only the daily services, special classes and professional salaries, but the continued existence of a national advocacy organisation having some access to government planning and finance. The Nordic side of the partnership has tried to emphasize the importance of advocacy, and of the inclusion of mentally retarded people in the ordinary government education, health and welfare services - since this sort of advocacy has been an important factor in the development of well-funded inclusive services benefitting mentally retarded people and their families in Nordic countries. Yet an evaluation team in 1988 noticed that this sort of advocacy was one of the weaker trends in SCEMRB. The stronger trend was towards separate facilities, with each branch aiming to have its own building on its own plot of land, in which it would 'do its own thing' (Hoel et al, 1988, pp. 14, 16).
Middle-class motivations. Subsequent evaluations have noticed the tendency of powerful, urban parents to secure resources for the benefit of their own MR children, ignoring the fact that the great majority of families have had no help at all, not even an information pamphlet or ten minutes of well-informed counselling (Miles et al., 1996). The drive to build separate facilities, and the concentration of resources to benefit a few, continue to be prominent in the late 1990s. The Nordic ambition to see integrated, decentralized services has been strongly resisted by parents who joined SCEMRB to secure benefits for their own child and who have not wanted to see those benefits 'diluted' by being shared with hundreds and thousands of other families. Such an attitude perhaps reflects a broader trend in urban Bangladesh, documented strikingly by Blanchet (1996), in which middle-class children are driven forward almost abusively through the 'examination hell' by ambitious families, while many children of the poor are grossly exploited by rapacious employers. Similar trends were reported from the 1970s and 1980s in urban India and Pakistan.
The ability of SCEMRB branch leadership to maintain an independent line, quietly rejecting the central policies of the NGO and its major funder, was one of the features that puzzled an idealistic but increasingly disillusioned Nordic advisor who spent several years with SCEMRB. He reported a curious form of organisational paralysis at the heart of SCEMRB:
"The lack of an effective administration and organisational control, decision- and policy making have led to a situation where the branches feel free to run their business in whatever way they like. And they are doing exactly that." (Haanes, 1994)
Nevertheless, this situation could coexist with his apparently contrary complaint a little later, that
"It is, as we all know, a sad fact that the SCEMRB constitution of today creates an undemocratic and highly centralised structure of power and control in the organisation." (Haanes, 1995)
The solution to the conundrum of how branches could do whatever they liked, despite the centralisation of power and control, may be found in the fact that, as also in Pakistan, very few NGOs or branches paid any attention to what was written in their constitution. The realities of power and action lay with the personalities in each place, and in the unwritten laws and hidden currents with which they moved.
The author's comparative impression of NGO development and MR services is based on a much longer involvement with Pakistani NGOs than with SCEMRB and its branches, so there may be some bias or imbalance here. Nonetheless, the impression is that NGO services in these two countries have reached a broadly similar level of development, though each has strengths that are lacking in the other. So far as concerns the type of services provided, there has also been some convergence over time in the sort of educational policies and issues affecting both countries, e.g. debate over separate or integrated services, rights and inclusion, as outlined by Miles and Hossain (1999).
The Pakistani NGOs have the strengths of diversity, in their goals, approaches and methods, in their local and external fund-raising links, in the varied drives and motivations of the leaders in different places, in the varied mixture of parents, professionals and other concerned people, even in the various sorts of competition between NGOs. They may not make a coherent impression on national planning or on the international scene, but they are well rooted all over urban Pakistan, and are unlikely to disappear. Even if some foreign donors pull out, others would be likely to continue. When new opportunities arise, or innovations appear from abroad, there is sufficient flexibility for one or another NGO to try them out, without the others needing to commit themselves. Even if there is no effective national platform, the government periodically takes soundings among the field leaders in various places.
The Bangladeshi national NGO and branches have the strength of unity - SCEMRB is known to government and national media as the body that speaks on MR; its experiences are to some extent cumulative, so that mistakes made and lessons learnt in one branch can be communicated to all; it produces and circulates one or two magazines, rather than thirty competing newsletters; the potential exists, and is occasionally realised, for a strong, well-established branch to assist a small struggling branch. SCEMRB can also credibly represent Bangladesh at international meetings, and perhaps has grown sufficiently confident that it can resist pressure from external donors to adopt western trends that it knows to be culturally inappropriate. It is, however, vulnerable unless it can broaden its financial support base.
The weaknesses of the NGOs in both countries are those common to NGOs worldwide: the lack of managerial competence, poor accounting and administration, narrow vision and weak planning, channelling of resources to the middle classes rather than to those in greater need, dominance of a small number of personalities, party spirit and politicking, and so on.
The Pakistani NGOs have made some efforts to obtain the benefits of a national platform, but any such organisation would probably remain weak because its members are very reluctant to give up any of their independence and competitiveness. In practice, the Bangladeshi organisational branches have been in some ways like the Pakistani NGOs, acting independently of their central core, and some of them contemplate an independent future in case the national organisation fails to sustain itself. Pakistan built up to its present resources over a longer period, and with a stronger economy; on the other hand, Bangladesh started its formal services in time to catch the 'disability development decade' of the 1980s, and the foreign partner put very substantial resources at its disposal. On the evidence available, neither development pattern seems clearly superior to the other.
Flexible position. Planners and aid agencies contemplating assistance to disability organisations would therefore be well advised to take a flexible position and evaluate the merits, arguments and earlier history of the particular country and situation in any proposal. Western disability NGOs in particular should think long and hard before imposing their own preoccupations on countries that may well be at a different stage of development, with different needs and preoccupations.
Since the late 1970s, some western organisations have first supported NGOs building special schools in developing countries; then switched their emphasis toward special units attached to ordinary schools. Next some of them decided that NGOs should provide no services but should campaign for government provision of integrated education, while others backed NGOs attempting Community-Based Rehabilitation. More recently, whatever was done had to be led by disabled people's groups, with special focus on women's rights; and now what is considered to be really needed is Inclusion, involving a total reconceptualisation of what education (or the whole of life) is all about. To implement any one of these policy changes with the slightest chance of effectiveness probably required from 20 to 50 years, as well as strong political, parental and professional motivation - none of which has been present. The good intentions behind these policies shifts is not in question - but for aid to be enabling rather than disabling, it should respect the realities as perceived by the recipient, rather than the ideological viewpoint of the donor.
1. Substantial historical documentation is listed at http://www.socsci.kun.nl/ped/whp/histeduc/mmiles/mesabib1.html and http://www.sign-lang.uni-hamburg.de/bibweb/Miles/Miles.html
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Bhandara, M.P. (1971). Cyclostyled letter Ref. No. SDC/1002/71 dated 20th March 1971, headed: School for Disabled Children - Funds for, from Mr. M.P. Bhandara, President, Managing Committee, Chambeeli School, D-103, Satellite Town, Rawalpindi.
Blanchet, T. (1996) Lost Innocence, Stolen Childhoods, Dhaka: University Press.
Daniélou, A. with Gopala Iyer, T.V. (transl.) (1993) Manimekhalai (The Dancer with the Magic Bowl) by Merchant-Prince Shattan, New Delhi: Penguin.
Haanes, K.J. (1994, 1995) Progress Reports on SCEMRB. Unpublished.
Haynes, D.E. (1987) From tribute to philanthropy: the politics of gift giving in a Western Indian city, J. Asian Studies 46: 339-360.
Hoel, V., Mathias, M. & Rahman, A. (1988) Consultancy report on SCEMRB prepared for NORAD, Oslo. Unpublished.
Khan, M. Ahmad (1972) Social Welfare Services in North-West Frontier Province. Peshawar: Board of Economic Enquiry NWFP, University of Peshawar.
Kozlowski, G.C. (1995) Imperial authority, benefactions and endowments (awqaf) in Mughal India, J. Economic and Social History of the Orient 38: 355-370.
The Mahabharata, transl. K.M. Ganguli (1883-1896), reprint 1993, from 1970 edition, New Delhi: Munshiram Manoharlal.
Makhdum, S.A. (1961) Special Education in West Pakistan, Lahore: West Pakistan Bureau of Education.
Miles, M. (1993) Mental handicap services: practical trends in Pakistan, European J. Special Needs Education 8: 45-58.
Miles, M. (1998a) Development of Community Based Rehabilitation in Pakistan: bringing mental handicap into focus, International J. Development, Disability & Education 45: 431-448.
Miles, M. (1998b) Professional and family responses to mental retardation in East Bengal and Bangladesh, 1770s-1990s, International J. Educational Development 18: 487-499.
Miles, M. & Hossain, F. (1999) Rights and disabilities in educational provision in Pakistan and Bangladesh: roots, rhetoric, reality, in: F. Armstrong & L. Barton (eds) Disability, Human Rights, and Education: cross cultural perspectives, 67-86, Buckingham: Open University Press. Also at: http://www.independentliving.org/LibArt/mmiles3.html
Miles, M., Hossain, F. & Ringstad, B. (1996) Report of an External Evaluation and Assessment of the Cooperation Between the Society for Care and Education of the Mentally Retarded Bangladesh (SCEMRB) and the Norwegian Association for Mentally Handicapped (NFPU) from 1982 to 1995. Carried out in January 1996. Oslo: NFPU & Dhaka: SCEMRB.
Muslim, A.S. (1993) Mental Retardation in Pakistan, Karachi: Society for Children in Need of Special Attention.
Pakistan Society for the Welfare of Mentally Retarded Children (1993) Introductory Brochure, Lahore.
Peters, H. & Rehman, F. (1988) Community Directed Rehabilitation for Disabled Children in NWFP Pakistan. Peshawar: Frontier Association for the Mentally Handicapped.
Rashid, S.K. (1978) Wakf Administration in India, a socio-legal study, New Delhi: Vikas.
SCEMRB Report 1977-81. Dhaka: Society for Care and Education of Mentally Retarded Bangladesh.
Sanyal, R. (1977) Indian participation in organized charity in early Calcutta, 1818-1866, Bengal Past and Present 96: 97-113.
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Stillman, N.A. (1975) Charity and social services in Medieval Islam, Societas: a review of social history 5 (2) 105-115.
Strickland, C.F. (1939) Chapters on 'Co-operation' and on 'Voluntary effort and social welfare', in: E. Blunt (ed.) Social Service in India, 312-343, 372-398, London: HMSO.
Inclusion: theory and practice
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09/03/2001