Lathyrism Disabling Conditions in Southasia Miles

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Disabling Conditions In South Asia: The HiddenFactors, With Implications For LeprosyBy M. Miles ([email protected])

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 incured leprosy patients will nonetheless continue through the21st century, probably with some stigma. This article givesnew perspectives on leprosy-related disabilities by reviewingthe historical careers of four disabling conditions that sharewith leprosy some social features: lathyrism, iodine deficiencydisorders (IDD), cataract and poliomyelitis. All are targetedfor eradication or severe reduction, using affordable surgery or

preventive measures; yet all have proved unexpectedlyresilient. Experience suggests that technical solutions alone

bring only partial success. They must be backed up by

individual and family self-help, community participation inservice provisions, and a redeployment of professionalexpertise.

This article is republished with permission, after appearing inthe Indian Journal of Leprosy (2003), vol. 75, pp. 153-167. Itstitle there was "Knowledge and management of disablingconditions in South Asian histories: implications for leprosy

futures." Title and contents have been revised and updated.

IntroductionLeprosy in South Asia, and other skin diseases with which it isoften confounded, have been "known" in a haphazard way forseveral thousand years. Highly effective multi-drug therapyhas been known for two decades and its deployment isclaimed to have produced substantial changes in the profile ofleprosy. The target of "elimination as a public health

problem", defined by the WHO as a prevalence of less than 1per 10,000 population, may now be technically attainable inSouth Asia, though its lack of transparency causes some

problems (Noordeen 1996, and discussants). DianaLockwood, editor of the "Leprosy Review", notes that the newdefinition creates a "virtual phenomenon" of elimination, i.e.,

it is public relations spin. "There is no evidence that reachingthis 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 newcases the numbers and incidence of new cases arerising" (Lockwood 2002). India, Brazil, Myanmar, Indonesia,Madagascar and Nepal account for some 83% of the world'sregistered cases, and India is by far the biggest of thesecountries (Global situation 2002). In the current South Asian

population of c. 1400 million, the WHO-backed target wouldbe 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" ofleprosy would take at least a further century to disappear, withthe eventual death of people who had leprosy-relateddisabilities and who could not, or did not wish to, gain accessto rehabilitative care. Such outcomes, though feasible, arehardly the sharp, clear-cut, objectives that would be politicallyattractive.

Leprosy as a disease has many peculiarities and complexities.The experience of leprosy sufferers has typically involvedconcealment and marginalisation, while the world of leprosy

professionals has often appeared self-contained andimpenetrable. Not surprisingly, there are high levels ofemotion and politicisation in debates about proposedsolutions; yet arguably the "specialness" and isolation areartificial barriers. South Asia has also targeted for seriousreduction, and eventual eradication, many other disablingdiseases and conditions, of which the historical knowledgeand management have some similarities and so might shed

light on possible outcomes with leprosy. Some examples arelathyrism (severe physical impairment in people forced to relyon the grass pea as a major part of their food); iodinedeficiency disorders (IDD, which result in goitre, cretinism,or deafness); cataract (causing serious visual impairment and

blindness), and poliomyelitis. All but the last demonstrablyhave a long history in South Asia. Cataract, polio and IDDhave well-established surgical or preventive treatment ofmodest cost, but are nowhere near eradication because thesocial barriers are many and complex. Lathyrism, polio andleprosy are often closely linked with extremely poor socio-economic living conditions. Studying leprosy in companywith other disabling conditions can help to move it from themargins of fear and isolation. A glance will be taken below atthe historical careers of lathyrism, IDD, polio and cataract tosee what can be learnt for the future of leprosy.

LathyrismEvidence oflathyrus sativus (grass pea or chickling vetch)cultivation has been found in Indian archaeological sites fromthe second millennium BC (Saraswat 1980), and a physicalimpairment attributed to eating khesari dal(the Indian foodname of this pulse or lentil) is mentioned in antiquity in

Susruta'sNidanasthana (77-78): "When there is trembling intaking the first few steps with limping and when organisationof the joint gets loose, it is known asKalayakhanja [Footnote:




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Kalaya -- Khesari pulse.]" (Singhal et al 1972: 28-29), thoughsome translators are cautious about identifying lathyrism here.After Susruta's time, the condition is found in South Asianwriting briefly in the late 16th century in theBhavaprakasa ofBhavamisra (Wujastyk 1998: 15, 168-169), and c. 1595 inAbul Fazal'sAin-i-Akbari (tr. 1891: II, 151). The latter notes

that, "Kisari is the name of a pulse, resembling peas, eaten bythe poor, but is unwholesome", with footnote on Kisari aslathyrus sativus. Symptoms were more precisely described bythe physician and surveyor Francis Buchanan ([1936]: I, 274)reporting on Bihar and Patna in 1811-1812: "It seems toconsist in a weakness and irregular motion of the musclesmoving the knees, which are bent and moved with atremulous irregular motion, somewhat as in the chorea, butnot so violent. When the disease has lasted some time, andhas become confirmed, the legs suffer emaciation. It is notaccompanied by fever, but in the commencement is often,

though not always, attended with pain." [1]

The first institutional service for lathyrism sufferers wasprobably the Mejah Cripples' Asylum (Allahabad),maintained "by the charity of the local rajas and land-holdersunder the supervision of the Tahsildar" (Steel 1884: 131-132,203). Some blind inmates and some with leprosy were alsolisted, but this asylum was begun mainly to care for sufferersfrom lathyrism, which affected an estimated 4% of the local

population in 1861. Four detailed papers between 1859 and1868 by James Irving, Civil Surgeon, Allahabad, reported this

cumulative disaster. Irving (1860: 136-137) found it"remarkable that thousands of people, who know that aparticular grain may render them lame, yet continue to use itfor food. Is this because they must either eat the poison orstarve? Will no other grain grow and be productive in theaffected [areas]? If not at present - will drainage or othermeans not render the soil capable of bearing other and lessdeleterious crops? Are there no means, in fact, of inducing the

people to give up the use of the poisonous food?" Forty yearslater, Irving's questions were still unanswered. Thegovernment 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 wereunderlined by a senior British pathologist, Major Hugh Acton.He had gone upcountry from Calcutta to examine 204 peoplewith lathyrism, who had found work at a kiln, breakinglimestone. Acton (1922: 242) estimated that there were60,000 people with lathyrism in North Rewah alone, many ofwhom "migrate to the larger cities, Patna, Benares, Bombayand Calcutta, and form a large percentage of the beggar

population." Though Acton could be described as a hard-boiled military scientist, sceptical of anything not visible on a

microscope slide, he concluded that the solution to lathyrismmust be "a sociological one" starting with abolition of therural 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 banthe payment oflathyrus sativus to agricultural workers in lieuof cash, and to dissuade rural folk from excessiveconsumption of kesari dal. These efforts "had no impactwhatever."

During the 1990s, South Asian researchers and others madetechnical advances in breeding types oflathyrus sativus inwhich the neurotoxin is significantly reduced, while retainingthe grass pea's remarkable capacity to flourish in barrenconditions. There remain, however, the social tasks oforganising distribution networks so that the new seeds areused by hundreds of thousands of subsistence farmersscattered across South and West Asia and the Horn of Africa,and monitoring the feeding outcomes with humans andlivestock. Technically, this process could probably succeed in

less than ten years; yet agricultural realities, and the imminentprospect of water catastrophes in the region, suggest thatseveral decades may pass before the benefits of currentresearch reach those who most need them. [2]

Iodine Deficiency DisordersEvidence 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 earlyBuddhist literature, e.g.Mahavagga (Oldenberg 1964: 91).Miles (1998) reviews centuries of later South Asian evidence,

and the puzzlement caused by the strongly contrastingprevalence of goitre in adjacent locations. The use of iodine ingoitre treatment in this region was reported by David Scott(1825) at Rangpur, within five years of the first publication ofthis remedy by Coindet at Geneva; and this was followed byan extensive study of goitre in Nepal by Mountford Bramley(1833). British scientists also noticed in the 1820s that Indiandruggists stocked traditional iodine-bearing sea plantremedies for goitre, similar to those known in China for manycenturies. Yet 170 years after Scott's success using iodineagainst 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 decadesthrough environmental degradation (Yusuf et al 1994).

The undoubted progress in understanding goitre and cretinismand in knowledge of their prevention or treatment remains to

be universally applied. Application is technically feasible inSouth Asia, though some epidemiological puzzles remain andthere are serious doubts whether the socio-political will existsto tackle the problem (National Goitre 1983: 10-11, 55-56)."Technical fixes" alone seem unable to solve it. Complex

social processes are involved, demanding politicaldetermination and skill in community education. Country datafrom the International Council for Control of Iodine




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Deficiency Disorders (ICCIDD 2003) indicate that over 3million South Asians have cretinism, and it is now understoodthat at least ten times that number are likely to suffer someloss of intellectual capacity through iodine deficiency,compromising the capacity of children to benefit fromeducation. The costs of prevention are small when compared

with the care and opportunity costs, and human suffering, thatarise from failing to make preventive measures effective.

Poliomyelitis Polioviruses may have been circulating in South Asia forcenturies, but clearly differentiated polio paralysis is not easyto find in the Sanskrit literature. Abhimanyu Kumar (1994:292-293) finds "encephalitic polio" in the Skanda grahadescribed in Vaghbata's Astanga Samgraha c. 600 CE, withsome uncertainty. Functional paralysis of unknown cause inchildren began to be noticed in 1865 by Alexander Garden,

Civil Assistant Surgeon, Saharunpur, who prepared probablythe first report on a South Asian polio epidemic, giving detailsof 15 cases out of 31 seen (Garden 1867). It would be 35years before the next Indian medical paper on polio was

published, a half-page editorial in 1903. Another 35 yearsadded only five more papers. However, Megaw & Gupta(1927: 310), who mapped disabling diseases such as goitre,rickets and lathyrism, were already suggesting that polio wasseriously under-reported, confirming a suggestion by Grant(1898). A comprehensive study and cumulativedocumentation by Vivian Wyatt (1998), of the rise and

probable decline of polio in India, shows the minimal concernamong medical observers in the 1950s and the huge growth inestimated cases by the 1980s. Wyatt demonstrates thecomplexity of the various strands of knowledge, and the largegaps in current knowledge, whether on the progress of polioin the child population, or the reasons behind epidemiologicalvariations across South Asia, or the outcomes of simplecommunity-level treatments. He examines in detail theevidence for a continuing disaster of provocation andaggravation polio through unnecessary and often unsterileinjections across South Asia, "thought to be the cause of moresevere paralysis in about 45% of cases and of converting anon-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 Dayshave had considerable impact, there remain questions aboutwhether the polio eradication success across three-quarters ofthe world can in fact be repeated in the densely populated andeconomically impoverished parts of South Asia.

CataractThe early Sanskrit texts on ophthalmology were listed andstudied in detail during the 1890s by Julius Hirschberg (tr.

1982), who visited India while compiling his multi-volumeglobal 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 ofthe Native Medical Institution, Peter Breton, witnessed aseries of traditional cataract extractions by Hindu and Muslimcataract operators. Mr Birch, a British magistrate of Calcutta,had a cataract successfully removed by a traditional operatornamed Sautcouree, and certified that he was happy with the

result. A senior British surgeon, William Twining, learnt toperform this operation by the Indian method and suggestedthat its simplicity and efficacy made it very suitable for

professionals who lacked the dexterity and confidence topractice 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 "theremarkable apathy" of the patients, together with their greatreluctance to be away from their homes for a day while

undergoing the procedure. Since the 1970s a significantliterature accumulated (recently e.g. Vaidyanathan et al 1999;Fletcher et al 1999; Limburg & Kumar 1998), examiningmore rigorously the reasons for continuing reluctance and thechanging trends. The basic fact remains unchanged, that verymany people with cataracts do not get modern surgery eventhough 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 helpis available and that it could make a significant difference toeveryday life; resigned acceptance of neglect and fate,

especially where the cataract sufferer is elderly and female; oran accumulation of circumstances which mean that, thoughthe sufferer is interested and willing, she never actuallyreaches the operating theatre.

In common with the medical and surgical provisions for theother disabling conditions noted above, the Asian "cataractworld" sometimes appears complacent, on the premise that,"You have the problem. We have the solution." Recentresearchers have directed a cooler gaze at ophthalmictreatments. Fletcher et al (1999) note that the conveyor-beltapproach of high-volume cataract surgery affords minimalopportunity for discussion. The surgeon and assistants mayknow that what they do with the eye will not vary on the basisof any amount of discussion; but prospective cataract patients,especially if elderly, may not see it that way, and may beunwilling to accept the status of inert packages on a conveyor-

belt. Research in Nepal, showing more modest outcomes ofcataract surgery than is found in the promotional literature,suggests that patients' apprehensions have sometimes been

justified (Pokharel et al 1998). A parallel study of cataractsurgery 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 toanalyse the role of cultural, social and economicfactors" (Snellingen et al 1998: 1428).




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Leprosy & ServicesAmong the "serious skin diseases" (kushtha) of South Asianantiquity the condition now classified as leprosy was almostcertainly active. However, Ronald Emmerick (1984), in adetailed scholarly account, resists efforts to force any exact

correspondence between ancient classifications (e.g. the "18kinds ofkushtha" listed by Susruta, Caraka and others) andmodern biomedical classifications. Features such as hand

paralysis, hoarseness of voice, loss of fingers, inward collapseof ear or nose, anaesthesia, found here and there in theSanskrit medical sources seem indicative of leprosy in themodern sense; yet while those sources might have groupedthese features (together with swelling of eyebrows and loss ofhair) 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 broadlysimilar period to the Chinese document, does draw togetherwhiteness 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 beganin South Asia is hard to know precisely. Charitableendeavours from antiquity and medieval times certainly

provided food and shelter, and sometimes ayurvedic treatment

(Majumdar 1968; Reddy 1941); yet in the extant literature thebeneficiaries were seldom differentiated beyond e.g. "thepoor", "the crippled", "the blind". Archival documentationexists for a specific leprosy service at Goa by the Portuguese,whose tradition of institutional care produced the San Lazaroleprosarium in 1530 (Schurhammer 1977: II, 211). The Dutchin Ceylon (Sri Lanka) followed with "Hendala LeprosyAsylum", after a wave of public alarm over the disease. Anintensive leprosy survey began at Colombo in November1693, probably the earliest formal survey of a disablingcondition in South Asia. Asylum construction was started in1705 and completed in 1708 (Goonaratna 1971). A centurylater, British and Indian social workers opened a leprosyinstitution at Calcutta.

Rural service provision for leprosy under British rule in the19th century was sparse (Kakar 1996); but where it existed,official responses could vary widely. In Chota Nagpur in the1870s, a District Officer noticed "the plight of leprosysufferers 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 bedealt with summarily by burning the huts to the ground", and

by returning the victims to their villages. Finding no cordialreception 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 Burmesevillagers was also noted by Lowe (1938), ranging fromsegregation to semi-isolation within the home.

Contested patterns of care were also apparent in the greatcities. In the 1870s at Bombay, Surgeon Vandyke Carter

struggled against anti-institutional rhetoric from far-offBritain, i.e. the view that segregation of leprosy sufferers inasylums was "almost universally regarded as suited only fortimes less enlightened than the present" (Carter 1872: 82) -despite the concurrent institution-building trend in Britain for

people with mental disabilities. The decline of Europeanleprosy was officially considered "attributable chiefly toimprovements in diet, as well as general hygiene; identicalresults being predicated in India, on similar grounds" (Carter,77). However, Carter saw little prospect of such practicalimprovements among the Indian poor. He did not believe that

leprosy contagion would shrivel in the sunlight ofsociological theory, and in the meantime found "the morally

bad effects on the people of permitting them to harbour intheir midst miserable and often disgusting cripples, are,whenever the number of them is considerable, quiteundeniable" (p. 78) Thus, even in the 19th century

professionals working in the South Asian disability field wereobliged to fend off theoretical frameworks and assumptionsfrom far distant lands and situations. In a well-documentedreview of the decline of leprosy across Europe (Jeanselme1931), the great geographical variations in what happened,

and in social and medico-legal responses, underlined thedangers of developing 'universal' guidelines on the basis ofsingle region's experience.

Implications for Leprosy FuturesThe reflections above were stimulated by a draft of anoverview paper by Srinivasan (2003). The complexities andwidespread misunderstandings in the leprosy rehabilitationfield, as described there, as well as the lack of bothcomprehensive data and a holistic human picture of what isgoing on, have substantial equivalents in the specificdisability categories sketched above. In the cataract field adramatic "quick fix" is available at affordable cost in much ofSouth Asia for most of the needy persons, with back-upsurgery for more complicated cases, and well-organisedinternational charities to supplement government efforts. Yetthe tide of cataract is hardly retreating; if anything, it isadvancing as the rural population has increasing lifeexpectancy without financial means for increasing medicalexpenses. Meanwhile, "biotechnical fixes" that remove theneurotoxic shadow from lathyrus sativus are being field-tested, a welcome advance; yet the availability of researchfunding may have more to do with the commercial potential

of the grass pea as a strong, high-protein crop, than theprotection of subsistence farmers from paralysis. Apredictable irony of history may occur if, in 30 years time,




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lathyrism has been eliminated and a million Asian farmershave lost their smallholdings to agrobusinesses that mass-

produce the toxin-free crop with minimal need of humanlabour. There is more than one way to cripple a community,even with benevolent intentions.

Traditional remedies for IDD were empirically known inSouth Asia centuries ago in iodine-bearing sea-plants, andover 170 years ago the active ingredient was being applied atRangpur; yet 150 years passed before serious prophylacticefforts 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 ofurban planners and administrators. [3]

Considering the historical careers of these various disablingconditions, some points stand out:

a. Significant attitudinal or behavioural changes mayoccur over 30-50 year periods, but are unlikely to

become embedded in South Asian rural societies inshorter periods than that. [4] Hyland (2000) describesfrankly how a 10-year "intensive public education andtreatment campaign", within her 20-year background ofwork in leprosy programs in rural Nepal, failed to makeany appreciable difference to the "multiple and multi-layered" and often "seemingly contradictory andconflicting" notions expressed by local people in pre-

and post- campaign surveys. Kakar (1996) reports asimilar range of Indian village perceptions of leprosy.Even when there appears to be progress, it is never aone-way street. Successful battles against malaria andtuberculosis led some people prematurely to believethat they were beaten in western countries, andvigilance was no longer required. They were muchmistaken. Even smallpox, whose demise was celebratedglobally, has been clandestinely preserved as a potentialweapon.

b. Few, if any, serious disabling diseases or conditions can

be eliminated entirely by technical fixes without theneed to involve communities in the process. It remainsessential to give informative explanations and to

persuade at least some opinion-leaders among thepoorest communities, not so much to give up theirexisting beliefs as to use the flexibility of their beliefsystems to accommodate practical experience of theefficacy of modern treatments. To do so effectively willrequire entering traditional conceptual worlds anddeveloping more respectful approaches to beliefsystems that may appear to conflict with modern

science but are not so structured as to admit of proof ordisproof. Some cooperation may be obtained byseeking common ground of experience, building on it,




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listening patiently to the interests and priorities ofpeople who score zero on modern 'criteria of success'yet who succeed in staying alive in very difficultcircumstances. Better use could be made of positiveresources in the major religions of Asia. Scientificresearchers have often viewed religious beliefs as

obstacles, or as reinforcement for misguided notions;yet among the custodians and teachers of religion thereis a great range of hermeneutic stance. Some aremotivated to update themselves and to harmonise theirknowledge with scientific theories (Miles 2002a). Withencouragement, 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 technologicaladvances, which can benefit the economically strongerhalf or two thirds of the population in most countries.

Yet the gaps will very likely increase between severalbillion people who benefit and one or two billionpeople beyond the margins of progress who will still bea prey both to the rapacious elements in society and tofreshly evolving pathogens. This divergence of socio-economic conditions, improving for vast numbers of

people while worsening for the huge but hardly visibleglobal underclass, is a difficult feature to grasp. It is

politically unacceptable, and governments are alreadyincreasing their efforts to massage the data,emphasizing the undoubted progress for many while

suppressing the pain of others, and redefining the termsto cover any awkward gaps.d. Strategies devised by UN agencies and international

public health bodies in the recent past have sometimestended toward oversimplification and mechanisation,favouring a kind of Fordist "mass-production ofhealth", fitting people into "The Plan", rather thanmaking plans flexible to embrace the world's richcultural variations (Miles 2003). A mechanical or ill-considered managerialism threatens to undermineglobal disease elimination programs, with targets andmethods set as though health 'production teams' couldall raise their effort to 110% and deliver the requirednumber of nuts and bolts by sheer willpower. The "Let'sJust Do It" pitch seems impervious to the realities of

biological variation and adaptation across the world, orto the fact that people and communities in situations ofdeepening poverty around the world are far from beinginert bits on an assembly line. One of the clearestresults of pressure to achieve externally predeterminedtargets is that governments, UN staff and aid workershave massaged data to pretend that the requirementshave been met (Godlee 1995). After falsification has

been going on for a few years, and targets have beenadjusted on the basis of false data, the leprosy worldhas 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 leprosyincidence and prevalence" (Skolnik et al, 2003: viii)appear in an independent evaluation of the GlobalAlliance 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 leprosyworld.

e. Conflicts between vertical and horizontal approacheshave appeared not only in the health field but also indisability services. Some people place CommunityBased Rehabilitation (CBR) in opposition toinstitutions or centres, though the WHO CBR schememakes clear the need for referral centres withspecialised skills. Special schools have been depicted asthe antithesis of ordinary schools, though the latter have

for centuries had significant levels of casual integrationof children with disabilities (Miles 2001). After manyfutile struggles it has become clear that the knowledge,skills and design accumulated under careful scrutiny inthe best of the specialised approaches are vital to thesuccess of the best integrated community-basedapproaches, while the community resources and linksare vital for disseminating knowledge, skills and designto people in the community. Thus, the expertise of

people who have been working for 30 years in verticalleprosy schemes, for example, should neither be

dispersed nor ignored. It needs to be adapted andapplied in the newer policy, so that people who havespent 30 years in primary health care schemes need notspend years discovering for themselves all thecomplexities and peculiarities of leprosy. Better resultscome by enlisting and sharing the existing informationresources, 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 oneanother's skills", and also makes clear that thecumulative experience of people with leprosy, and theirown organisations, now make a valued contribution tothe sum of "expertise". Studies by Arole et al (2002)suggest that the (rare) development of leprosy expertisein a horizontal health scheme facilitated a significantreduction in stigma levels in villages of Maharashtra,compared with levels in villages where verticalschemes were operating.

f. CBR in practice has already moved some way from itsoriginal conception. During the 1960s and 1970s, forexample, many East African children had poliodamage, but were helped by simple exercises and

walking aids provided at low cost by families and localartisans with some guidance from briefly trained semi-voluntary workers. This kind of service was formalised




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in the WHO CBR program, catering primarily forpeople with mild to moderate impairments. After 30years, with under-5 mortality much reduced and

populations much increased, CBR workers now mustoften deal with children having severe and multipledisabilities, yet with inadequate professional back-up(Miles 2002b). The specialists and referral centres thatshould have been developed to support the front linehave often fallen victim to 'anti-institutional' rhetoric ofthe 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 ofservices 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 curiosityand innovation often bypassing the traditional forces ofconservatism and reaction. In the long run it must bethese human resources that tackle the social problemsthat continue after technical solutions have been appliedto leprosy and other disabling diseases and conditions.This has been seen elsewhere in the world where peopleoften had narrower and shallower historical cultures on

which to draw, but applied themselves successfully toimproving the social context and facilitating inclusionof those with disabilities.

ConclusionThe South Asian historical development of knowledge andmanagement of diverse disabling conditions such aslathyrism, iodine deficiency disorders, poliomyelitis, andcataract reveals elements comparable with leprosy histories inthe region. Apart from helping to normalise leprosy, theexperiences with more familiar disabling conditions can assist

planners, professionals, communities and families to findsolutions with a combination of advocacy, technical fix, self-help, community resources, and redeployed professionalknow-how.

Notes

1. A report by General Sleeman around 1834 is usuallycited as the earliest "modern" description of lathyrismin South Asia; but Buchanan's report came 20 yearsearlier and is much clearer on the symptoms. He gave

detailed observations also on the crops and diet of Biharand 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 "seemsfanciful" (I: 274).

2. In a curious turn, C. Gopalan of the NutritionFoundation of India noted that by 1981 lathyrism had

practically disappeared from some Indian regions where

it was long endemic, because Green Revolutioninvestment in wheat and rice has reduced their price,while that oflathyrus sativus (still widely grown) hadrisen sharply, and other pulses even more so. The grass

pea was no longer "wasted" on labourers, who insteadreceived cheap wheat as wages. The toxic pea wasexported illegally to neighbouring states to adulterateand bulk up the still more expensive Bengal gram, at afine profit. "Evidently, the poor landless labourers were

being "saved" from the poisonous seed not because ofthe researches and educational programme of the last

two decades, but solely due to the intervention ofmarket forces. The very greed and profit motive of thelanded gentry, which for centuries was responsible forthe perpetuation of neurolathyrism among the poor ofRewa, has apparently helped to redeem the poor by

putting lathyrus sativus out of their economicreach" (Gopalan 1983: 55). Further, after discussing theidentification of "latent lathyrism" in children (p. 11),Gopalan noted (p. 14) that the Food Corporation ofIndia was narrowly prevented from using lathyrus

sativus in nationwide feeding programs for

undernourished children! News and expert discussionson lathyrism appear in the Lathyrus LathyrismNewsletter, at http://go.to/lathyrus/

3. Again, Gopalan (1999) notes "unforeseen factors"introduced by technological intervention, which aremoving IDD nearer to the children of urban planners.Iodine deficiency, once considered a hill country

problem, has recently been found increasing in thehugely populated plains of India. This may result fromintensive irrigation and multiple cropping, resulting inthe depletion of soil micronutrients, plus food additivesand contaminants that boost goitrogens or inhibit bodyutilisation of iodine.

4. The timescale for rural change is long, but not all theinertia can be laid at rural doors. International action ontranslating scientific discovery into practical effect, e.g.on iodinisation, smallpox vaccination, polioimmunisation, or detoxifying lathyrus, is also painfullyslow-moving. Major Acton in 1922 proposed anevidence-based plan of action, but lamented that "InIndia one publishes results and waits patiently for yearsto see them carried out into practice." (p. 247) Thiswould have raised a wry smile of recognition in

scientists and development agents, in any country, atany time during the following eighty years.




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