LEPROSY NETWORK OF INDIA

LEPROSY AND ITS MEANINGS: THE BODY AND SOCIETY

Jo Robertson
Wellcome Unit for the History of Medicine, University of Oxford, UK

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THE LEPROSY PATIENT, SOCIETY AND HISTORY: ORISSA 1900-1950

Chandi P Nanda & Biswamoy Pati

This paper began by touching upon the popular, adivasi (viz. tribal) perceptions of the disease and the initiatives undertaken by the ruling chiefs of Keonjhar. This included the structure of legitimacy and incorporation/cooption of adivasis by the princely state of Keonjhar. It then proceeded to focus on the way leprosy was located by the colonial health establishment. Viewed from within the framework of its concern for public health, it delineated the ambiguities and inner conflicts related to leprosy interventions in Orissa. It focused on the inner conflicts and tensions within the colonial establishment vis-à-vis leprosy as well as the low priority given to the disease. It demonstrated how, in many ways, colonial intervention reinforced the inherited perception of leprosy as god's curse.
Finally, it examined the life of the people inside the leprosy asylum at Cuttack, which was established in 1919. It unravelled some of the complexities involved in the way they negotiated it. As emphasised, this was marked by shifts and changes linked to discoveries related to the cure of leprosy in the 1920s, which was also reinforced by Gandhian efforts to work for the uplift of those affected by the disease. While these developments opened up new possibilities, they nevertheless could not do away with the problem of 'confinement'. This suggests a pattern of continuity, if viewed from the side of those affected by the disease. This element of continuity seems to be visible in post-colonial Orissa. In fact, as emphasised, the report of an inmate's suicide in 1953 demonstrates the agonised existence and alienation suffered inside the asylum.

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NINETEENTH CENTURY INDIAN LEPER CENSUSES AND THE DOCTORS

Shubhada S Pandya
Mumbai, India

[The word 'leper' is used solely because of its historical accuracy; there is no intention to disparage people with leprosy].

This paper focuses on two instances of medical analysis of leprosy census data in 19th century colonial India: the first the Bombay Presidency leper census of 1867 by Henry Vandyke Carter, the second the national decennial censuses of 1871-1891 (in which lepers were also enumerated) by the Leprosy Commission which visited India 1890-91. The question posed is "What was the relationship of the physicians' preconceptions about leprosy and their conclusion from the analyses?" It has been suggested that periodic counting, classification and categorisation of the Indian population enabled British colonialism to "know" and control, its subjects. Enumeration of lepers was proposed by the authorities as a prerequisite for disease containment.

The Bombay Presidency leper Returns of 1867 listed the name, age, sex, caste and place of residence of over 10,000 lepers, and also whether or not a leper had a similarly afflicted relative. All castes were found to be prone to leprosy. Carter was already a supporter of the hereditary theory of causation when he set about his analysis. He invested hereditary transmission with power over every character of leprosy revealed in the census returns, from widely varied regional and sub-regional prevalence rates, to variable sex ratios, to the rare instances where a great grand-parent was listed as a leper. He was undaunted by the inconvenient fact that over 80% of the listed lepers had denied a family history, attributing it to a reluctance on their part to admit the "truth". Like his colonial contemporaries who viewed Indians through the ethno-sociological prism of caste, Carter made the Indian leper 'comprehensible' by his fixed place in the caste map and the customary practice of caste endogamy. In this scenario, the leper's body, burdened with the leprous seed from pre-history, inexorably shackled by caste exclusivity and caste endogamy, could never free itself of the hereditary 'taint'. Indian leprosy became a paradigm of biological determinism.

Bureaucrats supervising the decennial imperial census operations in the later decades of the 19th century were aware from the outset that the leper statistics generated were, for various reasons, too flawed for definite conclusions to be drawn. The strongest member of the Leprosy Commission which visited India during the panic and lepra-phobia which engulfed the West in the Damien aftermath, was Beaven Rake. He was exceptional in being an avowed sceptic of the contagion theory, even in the case of Damien. The Commission felt obliged to respond to alarmists' who alleged that uncontrolled Indian leprosy posed an "Imperial Danger". In order to achieve their objective, the members showed fewer reservations than the bureaucrats about using questionable census statistics. They calculated leprosy trends in selected districts using anomalous figures, and demonstrated to their satisfaction that Indian leprosy was not increasing, and if anything, decreasing.

Thus in both instances analysis of census data provided an avenue to embellish and legitimise the preconceived notions of the physicians about the nature of leprosy in India. Despite the official claim that leper censuses were necessary for disease control, the data generated never resulted in systematic measures towards this end in India.

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MEDITATION AND SOCIAL REHABILITATION OF LEPROSY AFFECTED? AN ORAL HISTORY STUDY OF THIS UNIQUE PROJECT IN CONTEMPORARY INDIA

Sanjiv Kakar

The paper looks at the developments in leprosy intervention strategies in India during the last 2 decades, specifically at the success in leprosy control. This is substantiated by the decline in prevalence from 51 cases per 10,000 population in 1981 to 4.2 per 10,000 in March 2002.

The intervention of Multi Drug therapy from the 1980 with a very concrete message that leprosy is easily curable heralded a new era for leprosy control, cure and rehabilitation. The decline in prevalence and the large numbers of visibly cured patients combine to create a wholly different environment.

With a view to examining social rehabilitation, we ask to what extent these interventions have made a dent on public prejudice (urban and rural) against leprosy; whether prejudice continues to be directed against cured patients, (both with and without physical deformities) and the situation of patients who are undergoing treatment, and of their families.

The paper looks at one Indian approach to social rehabilitation, the unique philosophy of the Art of Living Foundation, which offers programs with yoga breathing and simple meditation to remove stress ("breathe out stress") and enhance self esteem, self confidence and self reliance. Similar Programs have already been offered in India and overseas for the visually challenged, for socially deprived sections, for those involved with substance abuse and for prison inmates. (Information on this non profit Foundation, which works with ECOSOC of the United Nations, may be found on their website http://artofliving.org ). Oral History is used to document this Leprosy and Meditation Project of the Art of Living foundation, and the uses of oral history are critically examined.

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LEPROSY AS A PUBLIC HEALTH ISSUE: THE COMISSÃO DE PROFILAXIA DA LEPRA (1915-1919)

Laurinda Rosa Maciel
Fundação Oswaldo Cruz, Rio de Janeiro, Brazil

This work aims at investigating activities and discussions developed by the members of the 'Comissão de Profilaxia da Lepra', between 1915 and 1919, that led to proposals concerning leprosy prevention and control. Reports published by the Commission have been analyzed and compared to existing social and political aspects at that time.
Sub-groups were established according to different approaches: leprosy and occupations, leprosy and housing, leprosy and isolation, leprosy and marriage, leprosy and immigration and leprosy transmissibility. These sub-groups were composed by scientists from different institutions. In this way it was possible to exchange ideas and theories.
The main conclusion derived from the work of the Commission was that it would be impossible to continue to take care of leprosy without the engagement of an official institution, related to the Ministério da Justiça e Negócios Interiores.
After the final discussions, the Commission presented several suggestions to the Government concerning leprosy care. One of the most relevant was the need of creating an office for managing public health and leprosy control in Brazil, considering that the disease was probably a public health issue. In 1920, the Inspetoria de Profilaxia da Lepra e Doenças Venéreas was created, establishing a link between public health actions and leprosy and venereal diseases.
The relevance of this study lies on the fact that it reveals diversified aspects concerning the creation of the first office for disease control, emphasizing the problem of leprosy in Brazil. This text is part of a research about the history of leprosy in Brazil between 1920 and 1980.

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PROPHYLAXIS AND VIOLENCE: LEPROSY AND PUBLIC HEALTH POLICIES IN BRAZIL (1930-1960)

Yara Nogueira Monteiro
Instituto de Saúde, São Paulo, Brazil

At the beginning of the 20th century, the eradication of epidemics and the control over endemic diseases were regarded as an important issue for the economical development in Brazil. At that time, however, leprosy represented a serious problem to be solved. As for 1930, the State of São Paulo, the most developed and richest of the country, adopted policies to fight leprosy, influencing the entire nation.
The prophylaxis policy of São Paulo was grounded on: a) "The Norwegian Model" -which recommended the isolation of the leprous; b) eugenics ideals - which proposed the exclusion of the "undesirables"; c) "The Campaign Model" -inspired in military organization. Based on those concepts, prophylaxis started to be considered as a battle, and the disease, as the enemy to be exterminated. Each and every action against the "sanitary struggle" was a hurdle to be withdrawn and, therefore, even individual rights had to be subjected to a wider communitarian demand. Within this point of view, the compulsory isolation of all the leprous was enacted, without any consideration of the manifestation or stage of the disease, gender or age, and the Department of Prophylaxis of Leprosy was empowered with a strict, hierarchical and centralized organization.
The prophylaxis conduct continued in São Paulo until 1967 against international recommendations and even against the Brazilian legislation, which had already abolished isolation in 1962.
This study is based on the legislation on leprosy, specialized literature, minutes of medical conferences, protocols from the prophylaxis service and medical records.
The aim of this paper is to analyse how the State, in the name of preserving public health, was able to intervene with every aspect of the life of the sick, to the extent of interfering with their families, affecting healthy parents, partners and children. Our objective is, as well, to discuss how the authoritarian and arbitrary prophylactic model of fighting leprosy, adopted in São Paulo, was socially and politically welcome in the country.

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ADOLPHO LUTZ AND THE CONTROVERSIES REGARDING LEPROSY TRANSMISSION IN BRAZIL

Jaime Larry Benchimol & Magali Romero Sá
Fundação Oswaldo Cruz, Rio de Janeiro, Brazil

This contribution is a partial result of a research project Adolpho Lutz and the history of tropical medicine in Brazil, aimed at producing a critical and annotated edition of the scientific work and unpublished correspondence of the Brazilian scientist. It also intends to produce a biographic essay and a review of the history of tropical medicine during Lutz professional years.

A world pioneer in the scientific study of the leper microbial agent and of its clinical and epidemiological aspects, Lutz defended with emphasis the theory that the disease was transmitted by mosquitoes.

During his early study years in Switzerland and Germany, Adolfo Lutz (1855-1940) had already published papers in zoology and clinic and therapeutic practices. The fundamental study he later developed on Ancylostoma duodenale, published in Leipzig in 1885, contributed to project the Brazilian helminthological research agenda in syntony with the theoretical and methodological practices of German, British and French microbiologists and parasitologists of the time.

In 1885-6, Lutz travelled to Hamburg to study with Paul Gerson Unna, one of the foremost German dermatologists. During that time, he investigated the morphology of germs related to several skin diseases, having even proposed a new classification for the leper agent, removing it from the genus Bacillus and re-classifying it as Coccothrix leprae. Lutz's study was facilitated by a new staining method, developed by him and improved by Unna. In 1889, the German dermatologist indicated his most prominent student as physician-in-chief of the Leper Settlement at Molokai Island, Hawaii. Lutz worked there for nine months, after what he continued his research on leper in his own private clinic for more then a year. From Hawaii, he moved to California in 1892, having spent there a few more months before his return to Brazil.

In 1893 Lutz assumed the direction of the Bacteriological Institute in São Paulo. By that time, medical entomology - especially the study of mosquitoes - became one of his main interests. He developed research in both urban and forest yellow fever (which he foresaw), as well as in forest malaria and the transmission of leper by mosquitoes. Since his time in Hawaii, Lutz had been nourishing the notion that leper was transmitted by mosquitoes. He continued research on the subject when he moved to Instituto Oswaldo Cruz in 1908, having defended passionately such idea in scientific meetings and medical commissions until his death in 1940.

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GEOGRAPHY AND LEPROSY

THE STATE, PHYSICIANS AND LEPROSY IN MODERN COLOMBIA

Diana Obregón
Universidad Nacional de Colombia

In the early twentieth century, leprosy became an obstacle for the civilising and modernising project of the Colombian elites. The Colombian government, with the expert assistance of the medical community, started to take control of lazarettos, and physicians began to medicalise leprosy. The government enacted extremely severe laws in order to control lazarettos. Their main purpose was to block the social and economic links of the town-lazarettos with the external world. The rationale for this position was to arrest the spread of the disease. The government also attempted to expel from the lazarettos a large population free of leprosy, mainly composed of relatives of leprosy sufferers, who were confined within leprosaria. The period in which the Colombian State began to control leprosaria coincided with the formation/modernisation of the Colombian State. Refinement of the arts of government, definition of citizenry (for example, through the establishment of such obligations as denouncing victims of leprosy), and exclusion of a social group defined as "lepers" came together. A disease-apart approach was institutionalised by establishing two distinct domains of public health: a special official agency was set up for leprosy, while all other diseases were handled through a different department. However, in spite of the efforts of physicians and the government, leprosy was not thoroughly medicalised. Patients actively opposed compulsory segregation with attempts at converting lazarettos into prison-asylums. Non leprosy sufferers remained at the lazarettos, and scientific medicine competed with popular healers, herbalists, and charlatans within these institutions. After all, these had been ordinary towns until the state took control of them in the early twentieth century. Since leprosaria were not hospitals, physicians were unable to order treatments. The medicalisation of leprosy was only partially accomplished because of its demarcation as a disease-apart.

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THE SPACES OF EXCLUSION IN AMERICAN PUBLIC HEALTH: THE CASE OF LEPROSY

D George Joseph

"Only when history and geography are integrated," wrote Erwin Ackerknecht, "will they reveal a genuinely true picture of conditions are they are" (Geschichte und Geographie der Wichtigsten Krankheiten, 1963, p. 2). Historians of medicine, however, have largely neglected geography in their social studies of disease and public health, and only recently, have spaces and places emerged as a discursive and analytical category among historians. The anthropologist Mary Douglas has described the human experience with leprosy in terms of the associations of moral contamination, defilement of the physical body, and pollution of the environment. In bringing together Ackerknecht's idea of place in historical understanding with Douglas' ideas about the stigma of leprosy, it becomes clear that discussions of geography and space-real and perceived, whether the physical space of the sufferer's body or the physical grounds of the leprosarium or the physical and social exclusion from the community sufferers endure-must enter into any complete examination of leprosy's history.

This paper considers American efforts to control leprosy in the late nineteenth and early twentieth centuries in three different geographic and socio-political contexts: (1) Penikese Island, Massachusetts, reflecting one locality's attempt to segregate patients before the creation of a national program of leprosy control; (2) Carville, Louisiana, emblematic of a federal program of leprosy quarantine; and (3) Molokai, Hawaii, reflecting acts of exclusion and segregation within a wider imperial agenda. A comparison of the three sites reveal that the leprosaria were spaces in which its residents were subject to exclusion, classification, and inquisition and that there was a fluid exchanges of ideas and practices between the geographic and socio-political contexts. The leprosaria also served as "moral architecture" as these attempts at leprosy control involved the physical and social re-ordering of bodies and geographic spaces to achieve their social and medical goals of eliminating the dangers of contagion and delineating the boundaries and the distance between the sick and healthy, the dangerous and safe, and the pure and impure.

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ISOLATION AND SOCIAL EXCLUSION WITHIN A SEGREGATED SOCIETY: A CASE STUDY OF WESTFORT LEPER INSTITUTION, SOUTH AFRICA, 1898-1948

Simonne Horwitz
Wellcome Unit for the History of Medicine, University of Oxford, UK

Seven miles west of Pretoria, South Africa's administrative capital, on a tract of 1200 acres of semi-arid land lies the remains of the Westfort Leper Institution. The new millennium saw plans being put in place to convert the shell of leprosarium into a top tourist attraction with a casino, lavish hotel and an adjoining community housing project. This use of the site as a vibrant and inclusive social centre is in sharp contrast with its history that was marked by isolation, segregation, and social exclusion. This paper argues that during the first half of the twentieth century segregation and exclusion at Westfort Leper Institution operated on multiple levels. Not only were patients isolated from the outside world but they were internally segregated along gender, class and racial lines. Through detailed case studies this paper demonstrates how these factors influenced the daily lives of those living with the disease, the way in which they were managed and, importantly, their access to facilities and resources. These divisions were highlighted by the fact that Westfort catered for male and female patients and was one of only two multi-racial government run leprosaria in South Africa. Unlike the leprosarium on Robben Island, Westfort was planned and built under a Boer and not Colonial government that, as this paper suggests, lead to a very different political and historical trajectory. With the closure of the leprosy asylum on Robben Island in 1931, Westfort became the only remaining multiracial leprosy asylum during the critical period when South Africa was becoming an increasingly racially segregated state. An examination of the institution during this period shows that segregation and social exclusion were increasingly seen not only in the way patients were treated and in the leprosy legislation but in the physical construction and re-construction of the institution that reinforced the focus on segregation over curative approaches to the disease. Top of page

LEPROSY CONTROL AND MEDICAL POLITICS IN OGOJA PROVINCE, NIGERIA, 1945-1967

John Manton
Wellcome Unit for the History of Medicine, University of Oxford, UK

This paper attempts to reproduce, in outline, a discursive space in which ambiguities relating to leprosy and its control, within the northern and eastern sections of colonial Ogoja Province, Nigeria, can be fielded. Leprosy control in this area was administered on behalf of the Nigerian government by the Roman Catholic Mission (RCM), through a series of central settlements and satellite segregation villages, the first of which were founded in 1945. It is difficult to convincingly reconstruct either a history or a geography of leprosy prevalence in Ogoja Province, an area largely marginal to British colonial concerns, whose demographic and linguistic patterns were poorly understood by administrators and missionaries alike. One of the main purposes of this paper, then, is to outline a cognitive map of Ogoja Province according to which the confusing diversity of statements about leprosy can be interpreted as constituting and reflecting a political arena encompassing the desires and needs of leprosy sufferers, African communities, Catholic missionaries and British colonial administrators.

How were colonial and missionary misapprehensions of Ogoja politics and society manifested in the evolution of leprosy control? The contention surrounding issues of taxation, wages, markets and charging for medical services, and the extent to which these issues, incompletely distinguished one from the other, emerged as facets of essentially the same administrative problem, provides one of the clearest indications of the epistemological crises at the core of colonial medicine and administration in Ogoja. I examine the social construction of destitution with regard to colonial expectations of customary family duty, the issue of payment for leprosy services and the evolution of competing and accompanying RCM-run 'clean' dispensary services, and the recurrent theme of leprosy-patient access to local market facilities.

This paper exemplifies a broader concern with role of the RCM, and of leprosy control, in the making of political forms for the administration of Ogoja in the context of the post-1945 formation of development ideologies, policies and agencies. As with much in the administration of colonial West Africa, these policies were characterised by a surprising lack of control. The porosity of leprosaria, as physical, conceptual and organisational spaces mitigated the force of compulsion, the success of case-finding and the development of research, acting to problematise the relation of leprosy control to its outcomes.

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CONTAGION, CONTAINMENT, AND EXCLUSION: THE SPATIAL GOVERNANCE OF LEPROSY AND CHINESE IMMIGRATION IN BRITISH COLUMBIA

Renisa Mawani

This paper explores the spatial and racial dimensions of leprosy management in late nineteenth and early twentieth century British Columbia (BC). In 1891, Victoria's Medical Health Officer detected the first cases of leprosy when five Chinese men believed to be afflicted with the disease were found in the City's Chinese quarters. In response to pervasive and growing local fears about 'Chinese leprosy,' the City responded quickly by creating a containment facility on D'Arcy Island, a small island located seventeen miles north-east of Victoria. Operative between 1891 and 1924, the island became a quarantine and detention facility that housed a total of 49 men, 43 of whom were Chinese. Although the lazaretto was intended to be a therapeutic and corrective space, island residents were offered virtually no treatment and were sent to the island to be spatially contained and in some cases, exiled from the nation through deportation orders. Through a detailed examination of government correspondence, newspaper coverage, legislation, and other archival sources, I explore the management of leprosy on D'Arcy Island and consider the ways in which anxieties about hygiene, sanitation, and public health were tied up with ongoing concerns about Chinese immigration and the protection of national borders. Although government officials - at the local, provincial, and federal levels - responded to escalating anxieties about leprosy through a number of repressive and coercive strategies (ranging from quarantine detention, to immigration restrictions, and in some cases deportation orders), I argue that the management of 'Chinese leprosy' was always geographically configured. Quarantine, segregation, and deportation were all legally mandated spatial techniques that set the physical and discursive parameters of national in/exclusion. But while the care and control of leprosy was endeavored through particular geographies of exile, I suggest that D'Arcy Island must be contextualized within the broader climate of Chinese exclusion that shaped BC at that historical moment. Thus, the spatial management of leprosy was only one dimension of a wider political agenda aimed at constructing a provincial and national identity by physically separating Chinese from European, diseased from healthy, and foreigner from citizen.

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THE SPATIAL POLITICS OF AN AFRICAN LEPROSARIUM

Harriet Deacon

Historically, the treatment of people identified as having leprosy has been heavily reliant on practices of exclusion from society and gender, race and class segregation within institutions. In colonial South Africa, people with leprosy were stereotyped as sexually deviant and black and until the 1890s only the destitute entered leprosaria. This paper provides a geographically-informed analysis of the Robben Island leprosarium, established in 1846 and closed in 1931. It was an early example of a state-run leprosarium under medical supervision that housed under a hundred destitute, mainly black, voluntary patients, until compulsory segregation in the 1890s brought in five or six times that number, and more white patients. The paper argues that gender segregation had a greater impact on the Robben Island institution than any other form of patient segregation. All female leprosy patients were removed from Robben Island in 1871. This was not only because doctors and officials needed to show that they were preventing hereditary transmission of the disease, but because they could not use force to prevent contact between the sexes on the island without appearing illiberal. In the 1880s, when the female leprosy patients were returned to the Island, heredity was still accepted as a possible mode of transmission in spite of the discovery of the lepra bacillus. Fear of the transmission of the disease to whites (by heredity as much as by contagion), and especially through sexual contact, was more important in justifying stricter segregation laws in the 1880s and 1890s than theories of contagion alone. Theories of contagion changed over time, too. In the early 1890s, the key path of infection was thought to be the physical bodies of leprosy patients: once the leprosy wards were empty, they could be reused. By the 1930s, however, the environment of the leprosy patient was also considered tainted. Empty wards had to be totally destroyed by fire and demolition.

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