Lathyrism Disabling Conditions in Southasia Miles

Disabling Conditions In South Asia: The Hidden Factors, With Implications For Lepr...
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A bimonthly web -zine of international disability news and views Issue no. 20 September-October 2003 home page - text-only home page
Disabling Conditions In South Asia: The Hidden Factors, With Implications For Leprosy
By M. Miles (m99miles@hotmail.com)
Abstract. Elimination of leprosy "as a public health problem" may be achievable in South Asia through Multi-Drug Therapy, within a few years. Management of disability in cured leprosy patients will nonetheless continue through the 21st century, probably with some stigma. This article gives new perspectives on leprosy-related disabilities by reviewing the historical careers of four disabling conditions that share with leprosy some social features: lathyrism, iodine deficiency disorders (IDD), cataract and poliomyelitis. All are targeted for eradication or severe reduction, using affordable surgery or preventive measures; yet all have proved unexpectedly resilient. Experience suggests that technical solutions alone bring only partial success. They must be backed up by individual and family self-help, community participation in service provisions, and a redeployment of professional expertise. This article is republished with permission, after appearing in the Indian Journal of Leprosy (2003), vol. 75, pp. 153-167. Its title there was "Knowledge and management of disabling conditions in South Asian histories: implications for leprosy futures." Title and contents have been revised and updated. Introduction Leprosy in South Asia, and other skin diseases with which it is often confounded, have been "known" in a haphazard way for several thousand years. Highly effective multi-drug therapy has been known for two decades and its deployment is claimed to have produced substantial changes in the profile of leprosy. The target of "elimination as a public health problem", defined by the WHO as a prevalence of less than 1 per 10,000 population, may now be technically attainable in South Asia, though its lack of transparency causes some problems (Noordeen 1996, and discussants). Diana Lockwood, editor of the "Leprosy Review", notes that the new definition creates a "virtual phenomenon" of elimination, i.e., it is public relations spin. "There is no evidence that reaching this predefined prevalence will reduce transmission, incidence, or the annual number of new cases"; on the
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contrary, "in the six countries that account for 88% of new cases the numbers and incidence of new cases are rising" (Lockwood 2002). India, Brazil, Myanmar, Indonesia, Madagascar and Nepal account for some 83% of the world's registered cases, and India is by far the biggest of these countries (Global situation 2002). In the current South Asian population of c. 1400 million, the WHO-backed target would be reached by bringing the number of registered 'active' leprosy cases down below 140,000. Yet even if that occurred, and the data were genuine, the visible human "problem" of leprosy would take at least a further century to disappear, with the eventual death of people who had leprosy-related disabilities and who could not, or did not wish to, gain access to rehabilitative care. Such outcomes, though feasible, are hardly the sharp, clear-cut, objectives that would be politically attractive. Leprosy as a disease has many peculiarities and complexities. The experience of leprosy sufferers has typically involved concealment and marginalisation, while the world of leprosy professionals has often appeared self-contained and impenetrable. Not surprisingly, there are high levels of emotion and politicisation in debates about proposed solutions; yet arguably the "specialness" and isolation are artificial barriers. South Asia has also targeted for serious reduction, and eventual eradication, many other disabling diseases and conditions, of which the historical knowledge and management have some similarities and so might shed light on possible outcomes with leprosy. Some examples are lathyrism (severe physical impairment in people forced to rely on the grass pea as a major part of their food); iodine deficiency disorders (IDD, which result in goitre, cretinism, or deafness); cataract (causing serious visual impairment and blindness), and poliomyelitis. All but the last demonstrably have a long history in South Asia. Cataract, polio and IDD have well-established surgical or preventive treatment of modest cost, but are nowhere near eradication because the social barriers are many and complex. Lathyrism, polio and leprosy are often closely linked with extremely poor socioeconomic living conditions. Studying leprosy in company with other disabling conditions can help to move it from the margins of fear and isolation. A glance will be taken below at the historical careers of lathyrism, IDD, polio and cataract to see what can be learnt for the future of leprosy. Lathyrism Evidence of lathyrus sativus (grass pea or chickling vetch) cultivation has been found in Indian archaeological sites from the second millennium BC (Saraswat 1980), and a physical impairment attributed to eating khesari dal (the Indian food name of this pulse or lentil) is mentioned in antiquity in Susruta's Nidanasthana (77-78): "When there is trembling in taking the first few steps with limping and when organisation of the joint gets loose, it is known as Kalayakhanja [Footnote:
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Kalaya -- Khesari pulse.]" (Singhal et al 1972: 28-29), though some translators are cautious about identifying lathyrism here. After Susruta's time, the condition is found in South Asian writing briefly in the late 16th century in the Bhavaprakasa of Bhavamisra (Wujastyk 1998: 15, 168-169), and c. 1595 in Abul Fazal's Ain-i-Akbari (tr. 1891: II, 151). The latter notes that, "Kisari is the name of a pulse, resembling peas, eaten by the poor, but is unwholesome", with footnote on Kisari as lathyrus sativus . Symptoms were more precisely described by the physician and surveyor Francis Buchanan ([1936]: I, 274) reporting on Bihar and Patna in 1811-1812: "It seems to consist in a weakness and irregular motion of the muscles moving the knees, which are bent and moved with a tremulous irregular motion, somewhat as in the chorea, but not so violent. When the disease has lasted some time, and has become confirmed, the legs suffer emaciation. It is not accompanied by fever, but in the commencement is often, though not always, attended with pain." [1] The first institutional service for lathyrism sufferers was probably the Mejah Cripples' Asylum (Allahabad), maintained "by the charity of the local rajas and land-holders under the supervision of the Tahsildar" (Steel 1884: 131-132, 203). Some blind inmates and some with leprosy were also listed, but this asylum was begun mainly to care for sufferers from lathyrism, which affected an estimated 4% of the local population in 1861. Four detailed papers between 1859 and 1868 by James Irving, Civil Surgeon, Allahabad, reported this cumulative disaster. Irving (1860: 136-137) found it "remarkable that thousands of people, who know that a particular grain may render them lame, yet continue to use it for food. Is this because they must either eat the poison or starve? Will no other grain grow and be productive in the affected [areas]? If not at present - will drainage or other means not render the soil capable of bearing other and less deleterious crops? Are there no means, in fact, of inducing the people to give up the use of the poisonous food?" Forty years later, Irving's questions were still unanswered. The government was preparing an official enquiry into lathyrism (Editorial 1903), which had no apparent effect on the issue. Sixty years after Irving's questions, the social problems were underlined by a senior British pathologist, Major Hugh Acton. He had gone upcountry from Calcutta to examine 204 people with lathyrism, who had found work at a kiln, breaking limestone. Acton (1922: 242) estimated that there were 60,000 people with lathyrism in North Rewah alone, many of whom "migrate to the larger cities, Patna, Benares, Bombay and Calcutta, and form a large percentage of the beggar population." Though Acton could be described as a hardboiled military scientist, sceptical of anything not visible on a microscope slide, he concluded that the solution to lathyrism must be "a sociological one" starting with abolition of the rural debt-slavery that forced workers to accept risky food as
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their wages. Sixty more years down the line, Gopalan (1983) noted that the Indian government in the 1950s had tried to ban the payment of lathyrus sativus to agricultural workers in lieu of cash, and to dissuade rural folk from excessive consumption of kesari dal. These efforts "had no impact whatever." During the 1990s, South Asian researchers and others made technical advances in breeding types of lathyrus sativus in which the neurotoxin is significantly reduced, while retaining the grass pea's remarkable capacity to flourish in barren conditions. There remain, however, the social tasks of organising distribution networks so that the new seeds are used by hundreds of thousands of subsistence farmers scattered across South and West Asia and the Horn of Africa, and monitoring the feeding outcomes with humans and livestock. Technically, this process could probably succeed in less than ten years; yet agricultural realities, and the imminent prospect of water catastrophes in the region, suggest that several decades may pass before the benefits of current research reach those who most need them. [2] Iodine Deficiency Disorders Evidence of goitres in South Asia also dates from antiquity, with a description of four types in Susruta's Nidanasthana (Singhal et al 1972: 171). Mention also occurs in early Buddhist literature, e.g. Mahavagga (Oldenberg 1964: 91). Miles (1998) reviews centuries of later South Asian evidence, and the puzzlement caused by the strongly contrasting prevalence of goitre in adjacent locations. The use of iodine in goitre treatment in this region was reported by David Scott (1825) at Rangpur, within five years of the first publication of this remedy by Coindet at Geneva; and this was followed by an extensive study of goitre in Nepal by Mountford Bramley (1833). British scientists also noticed in the 1820s that Indian druggists stocked traditional iodine-bearing sea plant remedies for goitre, similar to those known in China for many centuries. Yet 170 years after Scott's success using iodine against goitre in India, at least 70 million people in India, Nepal, Pakistan and Bangladesh suffer mild to severe IDD, while over 200 million are considered at risk (ICCIDD 2003), and in Bangladesh IDD have increased over recent decades through environmental degradation (Yusuf et al 1994). The undoubted progress in understanding goitre and cretinism and in knowledge of their prevention or treatment remains to be universally applied. Application is technically feasible in South Asia, though some epidemiological puzzles remain and there are serious doubts whether the socio-political will exists to tackle the problem (National Goitre 1983: 10-11, 55-56). "Technical fixes" alone seem unable to solve it. Complex social processes are involved, demanding political determination and skill in community education. Country data from the International Council for Control of Iodine
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Deficiency Disorders (ICCIDD 2003) indicate that over 3 million South Asians have cretinism, and it is now understood that at least ten times that number are likely to suffer some loss of intellectual capacity through iodine deficiency, compromising the capacity of children to benefit from education. The costs of prevention are small when compared with the care and opportunity costs, and human suffering, that arise from failing to make preventive measures effective. Poliomyelitis Polioviruses may have been circulating in South Asia for centuries, but clearly differentiated polio paralysis is not easy to find in the Sanskrit literature. Abhimanyu Kumar (1994: 292-293) finds "encephalitic polio" in the Skanda graha described in Vaghbata's Astanga Samgraha c. 600 CE, with some uncertainty. Functional paralysis of unknown cause in children began to be noticed in 1865 by Alexander Garden, Civil Assistant Surgeon, Saharunpur, who prepared probably the first report on a South Asian polio epidemic, giving details of 15 cases out of 31 seen (Garden 1867). It would be 35 years before the next Indian medical paper on polio was published, a half-page editorial in 1903. Another 35 years added only five more papers. However, Megaw & Gupta (1927: 310), who mapped disabling diseases such as goitre, rickets and lathyrism, were already suggesting that polio was seriously under-reported, confirming a suggestion by Grant (1898). A comprehensive study and cumulative documentation by Vivian Wyatt (1998), of the rise and probable decline of polio in India, shows the minimal concern among medical observers in the 1950s and the huge growth in estimated cases by the 1980s. Wyatt demonstrates the complexity of the various strands of knowledge, and the large gaps in current knowledge, whether on the progress of polio in the child population, or the reasons behind epidemiological variations across South Asia, or the outcomes of simple community-level treatments. He examines in detail the evidence for a continuing disaster of provocation and aggravation polio through unnecessary and often unsterile injections across South Asia, "thought to be the cause of more severe paralysis in about 45% of cases and of converting a non-paralytic attack into paralysis in another 30% of the perhaps 200,000 cases in India each year" (Wyatt 1998: S1, S18-S-32). Although India's National Immunisation Days have had considerable impact, there remain questions about whether the polio eradication success across three-quarters of the world can in fact be repeated in the densely populated and economically impoverished parts of South Asia. Cataract The early Sanskrit texts on ophthalmology were listed and studied in detail during the 1890s by Julius Hirschberg (tr. 1982), who visited India while compiling his multi-volume global histories of ophthalmology. The traditional Indian practice of cataract surgery had interested Europeans at
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Calcutta as far back as the 1820s, when the Superintendent of the Native Medical Institution, Peter Breton, witnessed a series of traditional cataract extractions by Hindu and Muslim cataract operators. Mr Birch, a British magistrate of Calcutta, had a cataract successfully removed by a traditional operator named Sautcouree, and certified that he was happy with the result. A senior British surgeon, William Twining, learnt to perform this operation by the Indian method and suggested that its simplicity and efficacy made it very suitable for professionals who lacked the dexterity and confidence to practice more complicated ophthalmic surgery (Breton 1825). Breton also remarked on the great difficulties he experienced "even in this populous town of Calcutta, in procuring cataract patients for operation" (Ibid. 367). He attributed this to "the remarkable apathy" of the patients, together with their great reluctance to be away from their homes for a day while undergoing the procedure. Since the 1970s a significant literature accumulated (recently e.g. Vaidyanathan et al 1999; Fletcher et al 1999; Limburg & Kumar 1998), examining more rigorously the reasons for continuing reluctance and the changing trends. The basic fact remains unchanged, that very many people with cataracts do not get modern surgery even though it is available nearby at modest cost. The reasons may be fear (of eye damage, or of pain, or simply of the unknown); or the direct and indirect costs; or lack of awareness that help is available and that it could make a significant difference to everyday life; resigned acceptance of neglect and fate, especially where the cataract sufferer is elderly and female; or an accumulation of circumstances which mean that, though the sufferer is interested and willing, she never actually reaches the operating theatre. In common with the medical and surgical provisions for the other disabling conditions noted above, the Asian "cataract world" sometimes appears complacent, on the premise that, "You have the problem. We have the solution." Recent researchers have directed a cooler gaze at ophthalmic treatments. Fletcher et al (1999) note that the conveyor-belt approach of high-volume cataract surgery affords minimal opportunity for discussion. The surgeon and assistants may know that what they do with the eye will not vary on the basis of any amount of discussion; but prospective cataract patients, especially if elderly, may not see it that way, and may be unwilling to accept the status of inert packages on a conveyorbelt. Research in Nepal, showing more modest outcomes of cataract surgery than is found in the promotional literature, suggests that patients' apprehensions have sometimes been justified (Pokharel et al 1998). A parallel study of cataract surgery barriers in Nepal underlines the need for medical professionals to "develop a more holistic understanding of the needs of the communities cultivating a greater capacity to analyse the role of cultural, social and economic factors" (Snellingen et al 1998: 1428).
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Leprosy & Services Among the "serious skin diseases" (kushtha ) of South Asian antiquity the condition now classified as leprosy was almost certainly active. However, Ronald Emmerick (1984), in a detailed scholarly account, resists efforts to force any exact correspondence between ancient classifications (e.g. the "18 kinds of kushtha " listed by Susruta, Caraka and others) and modern biomedical classifications. Features such as hand paralysis, hoarseness of voice, loss of fingers, inward collapse of ear or nose, anaesthesia, found here and there in the Sanskrit medical sources seem indicative of leprosy in the modern sense; yet while those sources might have grouped these features (together with swelling of eyebrows and loss of hair) just as they are grouped in a Chinese legal document probably from the 3rd century BC (McLeod & Yates 1981: 153), it seems that the Sanskrit writers did not so group them. A description in the Buddhist Jataka No. 516, of broadly similar period to the Chinese document, does draw together whiteness of limbs and head, a marred and bent frame, weakened hand, suppurating sores with a terrible smell, and people driving this "leper" away with sticks and stones (Cowell ed. 1905: V, 38-41). When the first specific service for people with leprosy began in South Asia is hard to know precisely. Charitable endeavours from antiquity and medieval times certainly provided food and shelter, and sometimes ayurvedic treatment (Majumdar 1968; Reddy 1941); yet in the extant literature the beneficiaries were seldom differentiated beyond e.g. "the poor", "the crippled", "the blind". Archival documentation exists for a specific leprosy service at Goa by the Portuguese, whose tradition of institutional care produced the San Lazaro leprosarium in 1530 (Schurhammer 1977: II, 211). The Dutch in Ceylon (Sri Lanka) followed with "Hendala Leprosy Asylum", after a wave of public alarm over the disease. An intensive leprosy survey began at Colombo in November 1693, probably the earliest formal survey of a disabling condition in South Asia. Asylum construction was started in 1705 and completed in 1708 (Goonaratna 1971). A century later, British and Indian social workers opened a leprosy institution at Calcutta. Rural service provision for leprosy under British rule in the 19th century was sparse (Kakar 1996); but where it existed, official responses could vary widely. In Chota Nagpur in the 1870s, a District Officer noticed "the plight of leprosy sufferers reduced to beggary" at Purulia, and "authorized the building of some huts for them north of the town". In 1883, his tidy-minded successor "regarded them as a nuisance to be dealt with summarily by burning the huts to the ground", and by returning the victims to their villages. Finding no cordial reception there, many "dragged their way back to Purulia to beg again in the streets" (Miller 1965: 35). A wide range of
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traditional responses toward leprosy sufferers by Burmese villagers was also noted by Lowe (1938), ranging from segregation to semi-isolation within the home. Contested patterns of care were also apparent in the great cities. In the 1870s at Bombay, Surgeon Vandyke Carter struggled against anti-institutional rhetoric from far-off Britain, i.e. the view that segregation of leprosy sufferers in asylums was "almost universally regarded as suited only for times less enlightened than the present" (Carter 1872: 82) despite the concurrent institution-building trend in Britain for people with mental disabilities. The decline of European leprosy was officially considered "attributable chiefly to improvements in diet, as well as general hygiene; identical results being predicated in India, on similar grounds" (Carter, 77). However, Carter saw little prospect of such practical improvements among the Indian poor. He did not believe that leprosy contagion would shrivel in the sunlight of sociological theory, and in the meantime found "the morally bad effects on the people of permitting them to harbour in their midst miserable and often disgusting cripples, are, whenever the number of them is considerable, quite undeniable" (p. 78) Thus, even in the 19th century professionals working in the South Asian disability field were obliged to fend off theoretical frameworks and assumptions from far distant lands and situations. In a well-documented review of the decline of leprosy across Europe (Jeanselme 1931), the great geographical variations in what happened, and in social and medico-legal responses, underlined the dangers of developing 'universal' guidelines on the basis of single region's experience. Implications for Leprosy Futures The reflections above were stimulated by a draft of an overview paper by Srinivasan (2003). The complexities and widespread misunderstandings in the leprosy rehabilitation field, as described there, as well as the lack of both comprehensive data and a holistic human picture of what is going on, have substantial equivalents in the specific disability categories sketched above. In the cataract field a dramatic "quick fix" is available at affordable cost in much of South Asia for most of the needy persons, with back-up surgery for more complicated cases, and well-organised international charities to supplement government efforts. Yet the tide of cataract is hardly retreating; if anything, it is advancing as the rural population has increasing life expectancy without financial means for increasing medical expenses. Meanwhile, "biotechnical fixes" that remove the neurotoxic shadow from lathyrus sativus are being fieldtested, a welcome advance; yet the availability of research funding may have more to do with the commercial potential of the grass pea as a strong, high-protein crop, than the protection of subsistence farmers from paralysis. A predictable irony of history may occur if, in 30 years time,
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lathyrism has been eliminated and a million Asian farmers have lost their smallholdings to agrobusinesses that massproduce the toxin-free crop with minimal need of human labour. There is more than one way to cripple a community, even with benevolent intentions. Traditional remedies for IDD were empirically known in South Asia centuries ago in iodine-bearing sea-plants, and over 170 years ago the active ingredient was being applied at Rangpur; yet 150 years passed before serious prophylactic efforts were made in iodine-deficient Himalayan areas. Country programs against IDD continue with a low profile, possibly because IDD have posed no threat to the families of urban planners and administrators. [3] Considering the historical careers of these various disabling conditions, some points stand out: a. Significant attitudinal or behavioural changes may occur over 30-50 year periods, but are unlikely to become embedded in South Asian rural societies in shorter periods than that. [4] Hyland (2000) describes frankly how a 10-year "intensive public education and treatment campaign", within her 20-year background of work in leprosy programs in rural Nepal, failed to make any appreciable difference to the "multiple and multilayered" and often "seemingly contradictory and conflicting" notions expressed by local people in preand post- campaign surveys. Kakar (1996) reports a similar range of Indian village perceptions of leprosy. Even when there appears to be progress, it is never a one-way street. Successful battles against malaria and tuberculosis led some people prematurely to believe that they were beaten in western countries, and vigilance was no longer required. They were much mistaken. Even smallpox, whose demise was celebrated globally, has been clandestinely preserved as a potential weapon. b. Few, if any, serious disabling diseases or conditions can be eliminated entirely by technical fixes without the need to involve communities in the process. It remains essential to give informative explanations and to persuade at least some opinion-leaders among the poorest communities, not so much to give up their existing beliefs as to use the flexibility of their belief systems to accommodate practical experience of the efficacy of modern treatments. To do so effectively will require entering traditional conceptual worlds and developing more respectful approaches to belief systems that may appear to conflict with modern science but are not so structured as to admit of proof or disproof. Some cooperation may be obtained by seeking common ground of experience, building on it,
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listening patiently to the interests and priorities of people who score zero on modern 'criteria of success' yet who succeed in staying alive in very difficult circumstances. Better use could be made of positive resources in the major religions of Asia. Scientific researchers have often viewed religious beliefs as obstacles, or as reinforcement for misguided notions; yet among the custodians and teachers of religion there is a great range of hermeneutic stance. Some are motivated to update themselves and to harmonise their knowledge with scientific theories (Miles 2002a). With encouragement, they may bridge across the gaps between scientific information and rural people. c. There are no static situations for planning. The 21st century will see huge new biogenetic and technological advances, which can benefit the economically stronger half or two thirds of the population in most countries. Yet the gaps will very likely increase between several billion people who benefit and one or two billion people beyond the margins of progress who will still be a prey both to the rapacious elements in society and to freshly evolving pathogens. This divergence of socioeconomic conditions, improving for vast numbers of people while worsening for the huge but hardly visible global underclass, is a difficult feature to grasp. It is politically unacceptable, and governments are already increasing their efforts to massage the data, emphasizing the undoubted progress for many while suppressing the pain of others, and redefining the terms to cover any awkward gaps. d. Strategies devised by UN agencies and international public health bodies in the recent past have sometimes tended toward oversimplification and mechanisation, favouring a kind of Fordist "mass-production of health", fitting people into "The Plan", rather than making plans flexible to embrace the world's rich cultural variations (Miles 2003). A mechanical or illconsidered managerialism threatens to undermine global disease elimination programs, with targets and methods set as though health 'production teams' could all raise their effort to 110% and deliver the required number of nuts and bolts by sheer willpower. The "Let's Just Do It" pitch seems impervious to the realities of biological variation and adaptation across the world, or to the fact that people and communities in situations of deepening poverty around the world are far from being inert bits on an assembly line. One of the clearest results of pressure to achieve externally predetermined targets is that governments, UN staff and aid workers have massaged data to pretend that the requirements have been met (Godlee 1995). After falsification has been going on for a few years, and targets have been adjusted on the basis of false data, the leprosy world has reached a situation where nobody really knows
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what is going on, nor how to regain solid ground. Such "uncertainties about what is really happening to leprosy incidence and prevalence" (Skolnik et al, 2003: viii) appear in an independent evaluation of the Global Alliance for the Elimination of Leprosy, which alludes (in a fairly diplomatic way) to recent shenanigans, personal feuds and throat-cutting between UN agencies, governments, NGOs and individuals in the leprosy world. e. Conflicts between vertical and horizontal approaches have appeared not only in the health field but also in disability services. Some people place Community Based Rehabilitation (CBR) in opposition to institutions or centres, though the WHO CBR scheme makes clear the need for referral centres with specialised skills. Special schools have been depicted as the antithesis of ordinary schools, though the latter have for centuries had significant levels of casual integration of children with disabilities (Miles 2001). After many futile struggles it has become clear that the knowledge, skills and design accumulated under careful scrutiny in the best of the specialised approaches are vital to the success of the best integrated community-based approaches, while the community resources and links are vital for disseminating knowledge, skills and design to people in the community. Thus, the expertise of people who have been working for 30 years in vertical leprosy schemes, for example, should neither be dispersed nor ignored. It needs to be adapted and applied in the newer policy, so that people who have spent 30 years in primary health care schemes need not spend years discovering for themselves all the complexities and peculiarities of leprosy. Better results come by enlisting and sharing the existing information resources, and being open about the knowledge gaps. The highly experienced practitioner Jean Watson (2003) comments that "leprosy-expert staff and CBR expert staff should observe, value and acquire one another's skills", and also makes clear that the cumulative experience of people with leprosy, and their own organisations, now make a valued contribution to the sum of "expertise". Studies by Arole et al (2002) suggest that the (rare) development of leprosy expertise in a horizontal health scheme facilitated a significant reduction in stigma levels in villages of Maharashtra, compared with levels in villages where vertical schemes were operating. f. CBR in practice has already moved some way from its original conception. During the 1960s and 1970s, for example, many East African children had polio damage, but were helped by simple exercises and walking aids provided at low cost by families and local artisans with some guidance from briefly trained semivoluntary workers. This kind of service was formalised
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in the WHO CBR program, catering primarily for people with mild to moderate impairments. After 30 years, with under-5 mortality much reduced and populations much increased, CBR workers now must often deal with children having severe and multiple disabilities, yet with inadequate professional back-up (Miles 2002b). The specialists and referral centres that should have been developed to support the front line have often fallen victim to 'anti-institutional' rhetoric of the 1980s and 1990s. AIDS is also decimating both the professional and community human resources, changing the CBR equation in ways still incalculable. This is not to say that the CBR approach was mistaken. It arose justifiably to correct the urban concentration of services and their inaccessibility to rural populations; yet the planners did not foresee that the ideology would be taken to extremes, nor that family and community resources could be diverted by an unknown plague. g. Among 1,400 million South Asian people there is a colossal richness and variegation of historical cultures, knowledge, skills and design, with impulses of curiosity and innovation often bypassing the traditional forces of conservatism and reaction. In the long run it must be these human resources that tackle the social problems that continue after technical solutions have been applied to leprosy and other disabling diseases and conditions. This has been seen elsewhere in the world where people often had narrower and shallower historical cultures on which to draw, but applied themselves successfully to improving the social context and facilitating inclusion of those with disabilities. Conclusion The South Asian historical development of knowledge and management of diverse disabling conditions such as lathyrism, iodine deficiency disorders, poliomyelitis, and cataract reveals elements comparable with leprosy histories in the region. Apart from helping to normalise leprosy, the experiences with more familiar disabling conditions can assist planners, professionals, communities and families to find solutions with a combination of advocacy, technical fix, selfhelp, community resources, and redeployed professional know-how. Notes 1. A report by General Sleeman around 1834 is usually cited as the earliest "modern" description of lathyrism in South Asia; but Buchanan's report came 20 years earlier and is much clearer on the symptoms. He gave detailed observations also on the crops and diet of Bihar and Patna, mentioning khesari in that region (II: 499), and also in his other major regional reports. These led
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him to think the attribution to khesari "seems fanciful" (I: 274). 2. In a curious turn, C. Gopalan of the Nutrition Foundation of India noted that by 1981 lathyrism had practically disappeared from some Indian regions where it was long endemic, because Green Revolution investment in wheat and rice has reduced their price, while that of lathyrus sativus (still widely grown) had risen sharply, and other pulses even more so. The grass pea was no longer "wasted" on labourers, who instead received cheap wheat as wages. The toxic pea was exported illegally to neighbouring states to adulterate and bulk up the still more expensive Bengal gram, at a fine profit. "Evidently, the poor landless labourers were being "saved" from the poisonous seed not because of the researches and educational programme of the last two decades, but solely due to the intervention of market forces. The very greed and profit motive of the landed gentry, which for centuries was responsible for the perpetuation of neurolathyrism among the poor of Rewa, has apparently helped to redeem the poor by putting lathyrus sativus out of their economic reach" (Gopalan 1983: 55). Further, after discussing the identification of "latent lathyrism" in children (p. 11), Gopalan noted (p. 14) that the Food Corporation of India was narrowly prevented from using lathyrus sativus in nationwide feeding programs for undernourished children! News and expert discussions on lathyrism appear in the Lathyrus Lathyrism Newsletter, at http://go.to/lathyrus/ 3. Again, Gopalan (1999) notes "unforeseen factors" introduced by technological intervention, which are moving IDD nearer to the children of urban planners. Iodine deficiency, once considered a hill country problem, has recently been found increasing in the hugely populated plains of India. This may result from intensive irrigation and multiple cropping, resulting in the depletion of soil micronutrients, plus food additives and contaminants that boost goitrogens or inhibit body utilisation of iodine. 4. The timescale for rural change is long, but not all the inertia can be laid at rural doors. International action on translating scientific discovery into practical effect, e.g. on iodinisation, smallpox vaccination, polio immunisation, or detoxifying lathyrus, is also painfully slow-moving. Major Acton in 1922 proposed an evidence-based plan of action, but lamented that "In India one publishes results and waits patiently for years to see them carried out into practice." (p. 247) This would have raised a wry smile of recognition in scientists and development agents, in any country, at any time during the following eighty years.
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