DISABILITY IN SOUTH ASIA - MILLENNIUM TO MILLENNIUM

This article briefly traces the historical and cultural roots and heritage of disability services over the past millenium, and describes the different kinds of informal and formal activities and social responses towards disability that have been in existence in South Asia. The author suggests that a study of disability roots and heritage of Asian cultures and nations over past centuries and millennia, may be used as a base for a critical appraisal of present trends, and in planning future strategies in this field.

In the middle of the first millennium BC a dream was recorded in South West Asia concerning disability. This dream, in the Zoroastrian scriptures (1), envisioned a 'perfect world' in which there were no disabled people. During the next 2,500 years, South Asians and others have tried to realise the dream (or nightmare) in three main ways:

• by preventive measures or careful management of disabling diseases. South Asian cultures have a long history of hygienic and eugenic measures recorded in Ayurvedic and Unani sources, and widespread family-based therapies such as massage and herbal treatment. Some of these interventions have been validated by modern research.
• by control and reduction of socially and environmentally disabling factors, so that people with impairments should not suffer disabling social exclusion. For example, special ceremonies of educational initiation (upanayana) were devised for some severely impaired children, to provide them with the social benefits of status as adults even if they did not actually go through the education system (2).
• by actively killing infants with disabilities or odd appearance; and by letting older disabled people die of neglect. Some active killing was reported in the Punjab by the Greek historian Strabo, and there have been sporadic reports from other regions. (However, such deaths never matched the methodical efforts of some highly cultured 20th century Europeans to kill people with disabilities). Far more disabled South Asians have died of neglect, especially in the recurrent famines across the region.

These three sorts of action - with their widely differing effects on disabled people - have taken place concurrently, demonstrating the historical and continuing ambiguities of social responses. There have, of course, been other categories of social responses to disability, which have not envisaged the disappearance of disabled people. These fall broadly into three more categories:

Informal service. Through 4,000 years of South Asian history, mothers, grandmothers, sisters and aunts have given colossal daily informal services to their disabled children, adults and old people. (Men have also occasionally lent a hand). For example, the archetypal wife Draupadi is shown in Mahabharata serving first her five husbands and their retinue "including even the deformed and the dwarfs" before taking her own meal (3). The daily efforts of millions of women have hardly ever appeared in historical records. They have almost never had any recognition, and still to this day receive practically no attention from governments, planners or professionals.

Nobody would seriously deny that these unpaid services take place; yet there is very little record, research, report or public knowledge of how they are done, what is their value, how they might be supported, or how much they contribute to the life of the local and national community.

Formal or semi-formal service traditions. Some rulers organised charitable halls and health centres, offering food, shelter and treatment to poor and disabled people. This was recorded first in Sri Lanka (4), then in the Buddhist Jataka, in later reports by Chinese visitors in North India, in the Chola kingdom inscriptions, and in Southern Indian temple records. Much later, Muslim rulers built care institutions. Sher Shah Suri organised a regular 'social security' payment for some disabled persons during his brief reign. (5) The Portuguese, Dutch and finally British traders and colonists in a small way began similar traditional patterns of dole and asylums in coastal India from about 1505, and then across a broadening area to the 1830s. Meanwhile, rural communities engaged in a wide variety of semi-formal practices, sometimes allocating particular tasks to disabled people so that they should have a visible role to play in the community in return for their share in food and shelter. Such roles might be very honourable, e.g. the memorisation and recitation of scriptures by blind people. Often the task was humble, e.g. mentally retarded youths gathering firewood.

Self-help by disabled persons. After all, disabled people have lived their lives, borne their impairments, coped with their disabilities, and overcome or adapted themselves to the handicaps often placed in their way by thoughtless design of the environment and negative attitudes of society. So they know something about it! Yet once again, the huge amount of personal, private knowledge has very seldom been collated and formally communicated so as to become verified public knowledge that informs policy, planning and design. King Dhritarashtra complained that because he was blind, his eldest son treated him as a fool and ignored his commands (6). His experience resonates with disabled people in every age; but it does not tell us much about how blind people managed their everyday life. The Rajput wife of Binne Chand, mother of eight sons, reportedly managed to conceal her blindness from her husband for many years (7), a fascinating example of skill and adaptation around the house (and also a case of a husband taking wifely activities for granted!) Yet her skills were not recorded in detail and formulated as a teaching package so that thousands of blind girls could gain confidence and learn to manage a household.

By the middle of the 19th century, something new was happening in the South Asian disability scene, that would have profound after-effects. It was a typically European Protestant innovation grafted onto a traditional practice. Some blind children were attending school at an asylum in Calcutta, casually integrated with other children, learning their lessons by oral repetition. Their teachers heard that in London there was a method invented by Mr Lucas, by which blind people could learn to read the Bible. They wrote to London and by 1840 had obtained the specially embossed books, so that their blind students should have the Bible at their finger-tips. The introduction of this special method flourished, and then was overtaken by Dr William Moon's embossed script, and eventually in the 1880s an adaptation was made of Mr Braille's dots, with publication of many ordinary textbooks apart from the Christian scriptures. By the 1880s, a special technique was also being used by Mr Walsh for teaching deaf boys at Bombay. In the early 20th century these techniques had spread to several dozen special schools. Then in 1918 new methods based on Dr Maria Montessori's educational approach were used successfully with mentally and physically disabled children in a new school at Kurseong.

The idea of a specially adapted curriculum had actually been launched nearly 2,000 years earlier in Panchatantra, and many of the new European methods were foreshadowed in Buddhist and Ayurvedic writings of antiquity. For example, children's toys have been found in archaeological diggings at Taxila, site of the ancient Buddhist university. Buddhist texts of that period mention the importance of playing with toys in motivating children to learn their tasks. Ironically, the use of play in learning was rediscovered at Pakistan's National Institute of Psychology in the late 1970s, twenty miles from Taxila (8). The historical heritage was unknown to the 19th century European innovators, while their Asian hosts had forgotten it.

Ignorance on the European side and amnesia on the Asian side became crucial factors through 150 years, bringing us to the present. European innovations and professionalisation were increasingly imported and came to dominate disability service developments, taking an ever larger proportion of budget, time and attention. Many South Asians were uneasy about this but lacked the confidence to challenge the flow of imports. Political independence came in 1947, but western cultural domination continued in the disability field. Asians forgot that they had a long, rich historical-cultural heritage on which they could stand, and that could serve as a basis for critical appraisal of imports as well as for development of indigenous innovations. Not all of the European innovators were arrogant cultural imperialists. Some would have welcome hearing about indigenous methods and approaches; but they very seldom heard anything. By no means all of the Asian participants were unaware of their own heritage; but the specific parts about disabilities have only very recently aroused any interest or attention.

Meanwhile, in 100 million South Asian rural and urban homes, and in their neighbouring compounds, mohallas, bazars, schools and clinics, the vast majority of disabled people have been getting on with their lives, untouched by the innovations in a few hundred urban specialised schools and hospitals. Millions of women continue in the year 2000 to perform their daily services to disabled people in practically the same ways as in 1800, perhaps even 1500. We, the 'experts', the planners of service developments, still know very little about how the majority of people live their lives with disability, what they can do easily, or with difficulty, or not at all; what adaptations to the built environment would make the greatest positive differences, and why; which useful changes would have the highest priority with disabled people, which of these could be effected with money, and which would above all require a change of heart among neighbours, teachers, police, shopkeepers, religious leaders, mothers-in-law.

Is there a huge, popular movement across Asia to secure answers to these and many more questions? Will the answers be used for directing public resources more effectively, so that self-help and family care can be intelligently supported in the new millennium? No. Frankly, no. There is no popular mass movement concerned with disability. Such Disability Movement as exists has to find a place somewhere amidst the throng of Women, Dalits, Religious Minorities, Greens, regional language advocates, environmental protesters etc. The general public is indifferent.

Is there a strong Asian professional movement for more appropriate services and support to the ordinary, everyday lives of disabled people and carers? No. Frankly, no. The interest continues to be in European and North American innovations (with funding attached). During the final quarter of the 20th century, westerners have poured in (or trickled in) their well-intentioned aid, securing well-simulated enthusiasm from Asian professionals. In the 1970s the foreigners were funding special schools and talking about training specialised teachers and therapists. In the 1980s they offered Normalisation, Integration, Community Based Rehabilitation, and the eradication of smallpox. In the 1990s, the buzz has been Inclusion, Social Model, Leadership by Disabled People, and elimination (maybe) of polio. None of these offers or ideologies came with even the slightest recognition that South Asia might have some interesting indigenous experiences with which to contribute to its own future.

In the space of 25 years, imported western plans and trends have gone round several philosophical loops - but it has all moved so fast that nobody seems to have noticed. None of the enthusiastic advocates for various innovative packages deals openly and honestly with Asian counterparts. For example, it is seldom mentioned that large and highly developed European nations such as France and Germany have not closed their specialised services in favour of integration, and have no intention of doing so. It is not mentioned that 'Inclusion' emerged to cover up the widespread dissatisfaction with `Integration' efforts; nor that Inclusion requires a fundamental rethinking of the aims and social context of education, from top to bottom. At least 200 years will pass before any balanced judgement can be reached about the success or failure of this revolutionary ideological package, supposing that it is not superseded in 2005 by the next ideological wonder-plan.

Advocates somehow avoid mentioning that each trendy new turn is a very recent experiment with no working models, no independent evaluations, and no basis in Asian cultures and concepts. Nobody bothers to explain that CBR is premised on an urban idealisation of rural 'community spirit', where everyone is supposed to fulfil their duty of caring for one another. Simultaneously, urban disabled people's groups are being taught to fight for 'disability rights' based on a Euro-American male concept of the autonomous individual owing no duty to anyone but himself. These packages are imported as universal solutions. Some of them look quite exciting, some have useful ideas and attractive dreams; some are fatally flawed before ever they reach Karachi, Bombay or Chittagong. Very few of their advocates ever stop to enquire whether or how they might fit with the vastly varied and intricate patterns of South Asian rural or urban communities that have been evolving over several millennia.

Choices, Challenges
The year 2000 brings some choices and challenges to the readership of the Asia Pacific Disability Rehabilitation Journal. We can go with the flow, go with the money and razzamatazz, go with the slogans and ideologies, shifting gear and changing direction ever few years as a fresh western bandwagon hits town. Or we can think small, mind our own business, laugh privately at the fanatics, plod on in our own patch, doing something useful with hundreds of clients and colleagues, ignoring the needs of the millions.

Alternatively, and with greater difficulty, we can take some time and texts to study the disability roots and heritage of Asian cultures and nations over past centuries and millennia, then use that base for a cool and critical appraisal of trends and packages and enthusiasms. We can engage in some serious listening to disabled people and to home carers talking about how they live their lives and what their own ambitions are for improvements. We can move to integrate their insights with some of those parts of foreign experience that we find interesting. We can take courage from our cultural and conceptual base, and begin to build for the next thousand years.

REFERENCES

1. Darmesteter J (transl.): The Zend-Avesta, Part 1, The Vendidad, 17. Oxford: Clarendon, 1895.
2. Kane PV: History of Dharmasastra, II (i) 297-299. Poona: Bhandarkar Oriental Research Institute, 1968-1977.
3. Mahabharata, Sabha Parva, LI.
4. Geiger WL, Rickmers CM (transl.): Culavamsa, Pt 1, 13-14. London: Pali Text Society, 1929.
5. Elliot HM, Dowson J (eds): The History of India, IV, 423, 549. Lahore: Islamic Book Service, reprint 1979.
6. Mahabharata, Vana Parva, XLIX.
7. Ibbetson D, Maclagan ED, edited by Rose HA: Glossary of the Tribes and Castes of the Punjab (etc), III, 39. Lahore: Aziz, reprint 1978.
8. Ajmal M: The value of creative playing and cultural experiences. The Pakistan Times, 1978, December 22nd.

Title:
ASIA PACIFIC DISABILITY REHABILITATION JOURNAL Vol. 11 @ No. 1 @ 2000

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