ARCHIVE OF THE MONTH: League of Nations Room, United Nations, Geneva

After the third International Conference on Leprosy in Strasbourg, (July 28 – 31, 1923), the League of Nations formed a Commission for the Study of Leprosy in order to investigate the extent of the disease, the success of various treatments, and the feasibility of uniform policies on the disease. Although very few people remember this commission, there were several enduring outcomes. The foundation of the International Leprosy Association, the publication of the International Journal of Leprosy, and the International Leprosy Congresses that are held every five years can all be traced directly from the international coordination that followed on from the meetings of the Leprosy Commission of the League of Nations and the activity of its Commissioner Étienne Burnet.

The archives through which these determining activities can be traced are located in the League of Nations Room at the United Nations in Geneva. One of the intentions of the Leprosy Commission was to publish an annual digest of leprosy information for those interested, worldwide. To this end, a questionnaire was sent to every country throughout the world, and many responded with reports, photographs, and plans of their institutions. Part of the archive therefore quite literally represents a snapshot of work being done in such places as Surinam, Fiji, Macao, and Malaysia, to mention a few. Photographs of children receiving oral doses of chaulmoogra in Paramaribo, Surinam, can be seen side by side with photographs of patients sitting before the open-air cinema in the Federal Leper Settlement in the Straits Settlements of the Federated Malay Straits.

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WORKSHOP IN KOLHAPUR, MAHARASHTRA, 21-24 November, 2005

A Training Workshop on Collecting the Records of the History of Leprosy (21 – 24 November, Kolhapur, State of Maharashtra, India)

The King of Kolhapur, His Excellency, Shahu Chatrapati, established a colony for leprosy affected persons in Anuskura in 1875 and donated 555 acres of land for their use. Today, Kolhapur is surrounded by 6 self-settled colonies, where people who have been affected by leprosy live in their own independent communities.

A resident, outside the gates, at Shendapark, Kolhapur, erected in 1890

This workshop, to sensitise people to the importance of the history of leprosy and to identify leprosy archives, will mainly be directed at people who are working in the field. It will also highlight the work taking place at the Museum at Acworth, Mumbai, documenting, displaying, recording, and preserving the history of leprosy.

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WORKSHOP ON ROBBEN ISLAND

Stigma, Identity & Human Rights: The Experience of Leprosy in the Context of HIV/AIDS: An International Conference on Robben Island, South Africa, February 4-6, 2005

Individuals from 16 countries whose lives have been directly impacted by stigma, either as a result of leprosy or HIV/AIDS joined in discussion with historians specializing in the fields of leprosy, HIV/AIDS, and human rights. The powerful backdrop of Robben Island, as an international symbol of “the indestructibility of the spirit of resistance against colonialism, injustice and oppression”, provided a venue for discussions of how history can bring about social change. The conference was coordinated by the International Association for Integration, Dignity & Economic Advancement (IDEA), & The ILA Global Project on the History of Leprosy. The International Journal of Leprosy will soon be publishing the abstracts from this meeting.

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PRESERVING HISTORY

Culion Is, Palawan Group, The Philippines

Culion, in the Palawan group of islands, south west of Manila, was established as a colony for people affected by leprosy in the Philippines. On May 25, 1906 four French nuns of the Sisters of St Paul de Chartres were taken to there, and the next day, they began to take delivery of the sick. Initially 365 arrived and later on July 4 another group, in a much worse condition, were shipped in.

The register, indicating the age of admission of the very first sent to Culion, reveals that many were children or teenagers. 800 arrived in the first year and before the year was over, one third had died. By the end of 1910, 5,000 were confined, and after death, escapes, and releases, more than 2,000 were in residence. This register still exists on the island and is amongst the records of the colony that are currently being preserved, along with an overwhelmingly complete documentary, photographic, and clinical record of the island's time as a sanitorium, thanks to the coordination of Dr Arturo Cunanan and the expertise of archivist and University lecturer, Mr Ricky Punzalan, and his students from the University of the Philippines and with the financial support from Sasakawa Memorial Health Foundation.

Photos from Culion Museum

Many children were born on Culion. They were usually removed from their parents at six months so that they would not contract the disease. Many were adopted. The records for these children are still on Culion. These records have become brittle from exposure to sunlight and sea air. With funding from Sasakawa Memorial Health Foundation, the team have been preparing a room where the records can be stored, and then they will begin to restore them.

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Institute of Dermatology, Nanjing, China

With the support of the Sasakawa Memorial Health Foundation, Professor Jiang Cheng, from the Communicable Diseases Centre in Nanjing is organising the inventory and storage of the records held at the Institute. These records are largely administrative and epidemiological and date from the late 40s to the present. They provide the opportunity to build a picture of the experience of people confined in leprosy villages in China in the late 50s through to the present and to trace the procedures for bringing leprosy under control in the utterly unique political climate of the People's Republic of China. They also show international connections between China and the rest of the world through outstanding medical people such as Professor Ye Ganyun and the role of newspapers and the visual media in publicizing leprosy through the easing of censorship.

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The work of preserving the endangered records at the Gandhi Memorial Leprosy Foundation, in Wardha, Maharashtra, is being supervised by Mr Prabhakar Rao. An inventory of the documents, unpublished articles and important correspondence created during the evolution of the programme for leprosy control is being complied. These records include documents relating to the establishment of “Kusht Nivaran Samithi”, the precursor to Gandhi Memorial Leprosy Foundation, in 1950-51; records of the programmes for leprosy control in rural areas; the plans for Leprosy Control Units of the Gandhi Memorial Leprosy Foundation in different States, their operational strategies, and records of their human resources during 1951-55. Amongst this extensive archive there are also many documents relating to the activities of the thirteen leprosy control units established during 1951-55; clinical records of each unit in five yearly periods and summaries of work reports of each unit in five yearly periods; reports of visits to GMLF Leprosy Control Units by VIPs and their observations about the programmes; summaries of achievements of each Unit during monotherapy and multi-drug therapy periods; and the strategic programmes for leprosy control in urban areas.

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RECORDING VOICES OF PEOPLE AFFECTED BY LEPROSY

Suva, Fiji

In 1911 a leprosarium was set up on Makogai island, east of Suva, Fiji. Here people suffering from leprosy in the Pacific region were sent, including twenty patients from Quail Island, Lyttelton Harbour, NZ. The leprosarium at Makogai was closed in 1969 and people were moved to the P. J. Twomey Memorial Hospital in Suva. Dorothy McMeniman and Dr Jane Buckingham visited the hospital in August 2004 to record the stories of the people there, particularly those who had experienced isolation at Makogai. These recordings are to be deposited at the McMillan Brown Library at the University of Canterbury, in Christchurch, New Zealand, as part of the archive of the Pacific Leprosy Foundation.

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Ethiopia

Rosalijn Both, who is studying History at the University of Groningen, has conducted a series of interviews with women in Ethiopia, with the support of IDEA and the oral history component of the ILA Global Project on the History of Leprosy. She speaks about her experience: "During my visit (10 weeks in total) I managed to do (together with my translator) around forty interviews. Most women were interviewed in Addis Ababa, but a small amount took place in Dessie where a leprosy community is located. Forty interviews may not sound as much for a period of ten weeks. However, once I arrived in Ethiopia I realized that feeling at home, getting to know people and arranging things took a lot more time than expected. For instance, I wanted to get to know the women before starting to do the interviews. Therefore I paid some regular visits to the workshops at first. Those were really nice and at one occasion some of the elder women even taught me how to spin the cotton. This was hilarious to them because I wasn’t good at it at all! I feel a lot of friendship towards these women. Another thing I noticed was that my study prepared me for writing papers and working in archives but not that much for doing field work like this. It made things difficult in the beginning but I learned a lot and things got better along the way.

All the women I interviewed were employed at two different workshops where they make beautiful handicrafts. Working there makes it able for them to earn their living without having to be dependent on begging. I asked the women to bring their handicrafts so that they were able to continue their work during the interviews. All the interviews were taken in an office room near the workshop and recorded with a video camera."

Rosalijn Both,with women from Ethiopia

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SILRA, Singapore

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HUNTING FOR RECORDS

The search for records on leprosy for the database continues

Holland, Surinam, and Indonesia

The records created by the Dutch, as a result of their colonial activities and also their continuing interests in countries such as Indonesia and Surinam, will soon begin. This work will be organised by Professor Toine Pieters, at the University of Amsterdam, with the assistance of Dr Henke Menke, a retired dermatologist.

The Pacific Islands

A search for records created in the Pacific is being planned by Dr Jane Buckingham from the University of Canterbury, Christchurch, New Zealand, Dorothy McMenamin, oral historian, and Dr Annie Stuart at Otago.

Ethiopia

Mesele Terecha Kebede, from Addis Ababa, who has just completed his Master’s Thesis on Leprosy in Ethiopia, will be conducting research into the leprosy records in Ethiopia. This will include the records of the All Africa Leprosy Institute and the Amauer Hansen Research Institute, Bisidimo Leprosarium, the Harar Catholic Mission, the Ministry of Health, the Sudan Interior Mission, and the records of Shashemene Hospital.

Spain Professor Josep.L.Barona from Universitat de València is organising research in Spain for both Spanish and Spanish colonial records. The first three are described in the database:

• Archivo de la Diputación Provincial de Valencia (ADPV)Archivo Histórico Municipal de Valencia (AHMV)
• Archivo Rodrigo Pertegás. Biblioteca y Museo Histórico-Médico

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Electronic Mailing List
Posted on 7 November 2003

We now have an electronic mailing list, via Oxford University's EZMLM mailing service. To subscribe to the list, simply send an email to: leprosyhistory-subscribe@maillist.ox.ac.uk . EZMLM will send you a confirmation request, and once you reply to it, a message confirming that you are a subscriber will be sent to you.

For full details on using the list, please go to: http://www.oucs.ox.ac.uk/email/maillists/ezmlm/users.xml.

The list will provide a lively forum in which issues pertaining to leprosy history can be discussed, research ideas exchanged and information on events and conferences sent.

SEMINARS

Abstracts from 6th EAHMH Conference, Oslo, 2003
Posted on 6 November 2003

To read the abstracts from the 6th EAHMH Conference held in Oslo in August 2003, click on the link below.

Abstracts

Update - Publication of Papers Presented at Brazil Congress 2002
Posted on 22 September 2003

The 16th International Leprosy Congress in Salvador, Brazil in August, 2002 was the first time that leprosy history was a feature of this quadrennial Congress. The ILA Global Project on the History of Leprosy organised two sessions at which papers were presented in either Portuguese or English (the two official languages of the Congress).

The papers included in the special edition of História, Ciências, Saúde - Manguinhos, published by Casa de Oswaldo Cruz, represent the beginnings of research into the history of leprosy. They reflect some of the mystery, drama, and tragedy that has been inseparable from the story of leprosy, including the search for the cultivation of the bacillus, the uncertainties surrounding transmission of the disease, the problems of the representational weight of leprosy, the history of leprosaria, the politics and policies of leprosy control, and the point of view of people with leprosy. As the project's search for archives continues, it is impossible not to be impressed with the truly global sweep of the work done against leprosy, not to mention the complexity of the issues this work has given rise to. A world examined through the "lens" of the history of leprosy shows complex convergences of national histories, international, governmental and medical politics, and social narratives of race, class, and gender.

Our gathering in Salvador clearly demonstrated that there were many areas for future research in the field of leprosy history. We hope that this issue of História, Ciências, Saúde - Manguinhos indicates something of the extraordinary history of this disease, compensates in a small way for the historical silencing of the voices of those living with leprosy, and stimulates historical research in this field of the history of medicine and public health.

For information concerning acquisition or subscription, see http://www.coc.fiocruz.br/hscience or http://www.scielo.br/hcsm

Jo Robertson
Guest editor

ANALYSIS

Leprosy and the elusive M. leprae: colonial and imperial medical exchanges in the nineteenth century
Jo Robertson

Social representation of Hansen's disease, 30 years after leprosy denomination's having been replaced in Brazil
Maria Leide Wand-del-Rey de Oliveira, Carla Maria Mendes, Rachel Tebaldi Tardin, Mônica Duarte Cunha, Ângela Arruda

Adolpho Lutz and controversies over the transmission of leprosy by mosquitoes
Jaime Benchimol, Magali Romero Sá

Prophylaxis and exclusion: compulsory isolation of Hansen's disease patients in São Paulo
Yara Nogueira

Carville and Curupaiti: experiences of confinement and community
Cassandra White

A monument to Lazarus: the leprosy hospital of Rio de Janeiro
Thomas Hunter Smith III

The first international leprosy conference, Berlin, 1897: the politics of segregation
Shubhada S. Pandya

The anti-leprosy campaign in Colombia: the rhetoric of hygiene and science, 1920-1940
Diana Obregón

Global and local contexts of a national leprosy control programme: the NorthernOgoja Leprosy Scheme, Nigeria, 1945-1960
John Manton

Beyond quarantine: a history of leprosy in Puerto Rico, 1898-1930s
Julie H. Levison

'Essentially Christian, eminently philanthropic': the mission to lepers in British India
George Joseph


INTERVIEWS

Hansen's disease in the laboratory
Interview with Euzenir Nunes Sarno
Conducted by Jaime Benchimol, Luisa Massarani, Ruth B. Martins

A panorama of Hansen's disease: present status and perspectives
Interview with Tadiana Alves Moreira
Conducted by Jaime Benchimol, Laurinda Rosa Maciel, Roberta Cardoso Cerqueira, Ruth B. Martins

Memories and history of Hansen's disease in Brazil told by witnesses (1960-2000)
Text and interviews by Laurinda Rosa Maciel, Maria Leide Wand-del-Rey de Oliveira, Maria Eugênia N. Gallo, Mariana Santos Damasco


SOURCES

"Vida de Leprosa": the testimony of a woman living with Hansen's disease in the Peruvian Amazon, 1947
Introduction by Marcos Cueto e José Carlos de la Puente

The fight for survival: two decades in the life of a leper through his correspondence with Adolpho Lutz
Introduction by Magali Romero Sá, Jaime L. Benchimol

Correspondence selection by Mônica de Souza Alves da Cruz, Márcio Magalhães de Andrade
Revealing a history of exclusion: the experience at Hospital Colônia Itapuã Data and Research Center
Arselle de Andrade da Fontoura, Artur H. F. Barcelos, Viviane Trindade Borges

Researching documents on the history of Hansen's disease in Brazil
Vicente Saul Moreira dos Santos

The papers of Stanley Browne: leprologist and medical missionary (1907-1986)
Jo Robertson

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Abstracts from Seminar Series on Leprosy History at the University of Oxford - January to March 2003

Ridding the Empire of Leprosy: A Grand Undertaking and Its Legacy

Wellcome Unit for the History of Medicine
45-47 Banbury Road, Oxford, OX2 6PE
wuhmo@wuhmo.ox.ac.uk
Tel: (01865) 274600

Seminar Series - Hilary Term 2003

The following papers were read during this seminar series. For further information, the speakers can be contacted through their email addresses.

Week 1: Dr Jane Buckingham, Department of History, University of Canterbury
Christchurch, New Zealand
j.buckingham@hist.canterbury.ac.nz

Religion, Health, Sexuality and the Criminality of Assisted Suicide in Early Nineteenth Century British India

In her work on the development of colonial law in India, Radhika Singha argues that the British in India functioned from a 'novel' concept of 'sovereign right'which "negated the legitimacy of all other authorities in the exercise of force and violence in public life". [IESHR, 30, 2, (1993), p.181]. Singha locates strong evidence of this 'novel' concept in the British legal response to the practice of sati by Indian widows and to a lesser degree, of suicide by leprosy sufferers. This paper suggests however that in these areas of assisted suicide the British legislative response does not demonstrate a 'novel' concept of 'sovereign right' but one self-consciously consistent with indigenous precedent and practice. Further, while Indian legal culture is described by Maine and, more recently, Cohn, among others, as moving from a system based in 'status' to one of 'contract' under the transformative effects of colonial efforts to administer 'Indian law to Indians', a consideration of forms of assisted suicide suggests a continued concern with status in determining sentencing of those who assist in such deaths. Judgement as to the fitness of the suicide for death according to religious, health and sexual status was the principal factor influencing British perception of the legal status of the assistant; in particular, whether or not the assistant should be sentenced strictly according to the law of homicide. Rather than a 'status' based in social and caste relationships, it was somatic status, embedded in the corporeality of the Indian subject, which modified the criminality of assisted suicide under British Indian law.

Week 2: Dr Jo Robertson, Wellcome Unit for the History of Medicine, Oxford
jo.robertson@wuhmo.ox.ac.uk

Leprosy and the Elusive M leprae: Colonial and Imperial Medical Exchanges in the Nineteenth Century

In the 1800s, humoural understandings of leprosy successively give way to disease models based on morbid anatomy, physiopathology, and bacteriology. Linkages between these disease models were reinforced by the ubiquitous seed soil metaphor deployed both before and after the identification of M leprae. While this metaphor provided a continuous link between medical descriptions, Henry Vandyke Carter's On leprosy in 1874 marks a convergence of different models of disease. Simultaneously, this metaphor can be traced in popular and medical debates in the late nineteenth century accompanying fears of a resurgence of leprosy in Europe. Later the mapping of the genome ushers in a new model of disease, but ironically, while leprosy research draws its logic from a view of the world in which a seed and soil metaphor expresses many different aspects of the activity of the disease, the bacillus itself continues to be unreceptive to cultivation.

Week 3: John Manton - Wellcome Unit for the History of Medicine, Oxford
john.manton@nuffield.oxford.ac.uk

Missionary Leprosy Control: Ideologies and Practices in Ogoja provine, Nigeria, 1944-48

The period 1944-1948, the last in which there could be held to be no effective cure for leprosy, amounts to a high-water mark in the refinement of social, rhetorical and technical strategies of segregation in leprosy control. These strategies were framed in the Nigerian context by increased colonial administration spending on welfare and development, and by the race to isolate, test and standardise chemotherapeutic agents. It is perhaps no surprise that the Roman Catholic Mission Ogoja leprosy scheme, conceived and implemented amid the promise of development funding, begun in earnest during the last months of World War Two in early 1945, and carried through in an isolated area with a particularly high prevalence of leprosy, should embody many of the salient features, as well as the tensions and problems of this approach to leprosy control.

Week 4: Dr Rod Edmond - Reader in Nineteenth Century and Postcolonial Studies, School of English, University of Kent, Canterbury CT2 7NX
R.S.Edmond@ukc.ac.uk

Heredity or Contagion? The Debate Over the Causation of Leprosy in the Later 19th Century

In 1867, after a five-year Empire-wide survey, the Leprosy Committee of the Royal College of Physicians concluded that leprosy was a hereditary and not a contagious disease. The Colonial Office therefore instructed all colonial governors to repeal any laws affecting the personal liberty of lepers. The Physicians' Report was mainly the work of Gavin Milroy, Secretary to the Leprosy Committee. Milroy believed that the Report had inaugurated a progressive and liberal approach to leprosy by repudiating the traditional superstitions that it was communicated by touch and that those suffering from it should be strictly segregated. However the Report was never accepted in those colonies where leprosy was endemic and believed to be increasing. Whenever the Report's conclusions were questioned the Colonial Office would refer the matter to Milroy, who became permanent defence counsel for the hereditarian position. This meant that he failed to distinguish between traditional attitudes to disease, which were common enough in many colonies, and the research of Hansen and other microbiologists. He rejected Hansen's isolation of the leprosy bacillus as irrelevant. Milroy died in 1881 and by the end of that decade a consensus in favour of contagion had emerged. The findings of the 1867 Report remained official Colonial Office policy until the Berlin conference in 1897 but the hereditarian position had, in effect, already been abandoned.

Week 5: Professor Michael Worboys - Centre for the History of Science, Technology and Medicine and Wellcome Unit, University of Manchester, Manchester, M13 9PL
michael.worboys@man.ac.uk

Leprosy, Germs and Contagion in the British Empire, 1860-1900

Week 6: Simonne Horwitz - Wellcome Unit for the History of Medicine St Antony's College, Oxford University
Simonne.horwitz@sant.ox.ac.uk

Inside Westfort: Race, Sex and Segregation within a South African Leprosarium, During the First Half of the Twentieth Century

Seven miles west of Pretoria, South Africa's administrative capital, on a tract of 1200 acres of semi-arid lay the Westfort Leper Institution. The institution was built in 1898, and was one of only two multi-racial leprosaria in South Africa. As a multi-racial institution it offers a unique window into analysing the ideas around leprosy, race, gender, status and class. This paper aims to unpack these issues by focusing the lens inwards and looking at the multi-layered segregation of patients within a specific leprosarium. Detailed cases studies are used to explore the competing and sometimes contradictory forces which shaped isolation policy and patient care at Westfort and the multiple levels at which segregation occurred. It highlights the way in which ideas around leprosy, race, segregation and sex were reinterpreted in a local setting. It argues that the internal institutional logic and internal processes had an important effect on the way in which the patients, medical staff and officials shaped both policy and practice at Westfort.

The paper begins by arguing that the physical construction of the institution stressed ideas of isolation and segregation over medical treatment. It argues that the isolation of leprosy patients often had more to do with political, social and economic concerns than with purely medical knowledge. The paper then goes on to show, through the use of a case study, the story of Catharina van Niekerk, a young girl in the institution in the early 20th Century, the ways in which fears around sex, race and leprosy elicited a response from the State and shaped the lives of patients. Finally, the paper looks at two cases of patient disobedience. These cases show not only the way in which race was a major factor in the way in which patients were dealt with but the way in which patient agency played an important role in shaping their treatment.

Week 7: Dr Harriet Deacon - Freelance Historian Robben Island
harrietdeacon@iafrica.com

The Spatial Politics of an African Leprosarium

Historically, the treatment of people with leprosy has been heavily reliant on practices of exclusion from society and, perhaps more commonly in colonial contexts, segregation within institutions. In colonial South Africa, where people with leprosy were stereotyped as sexually deviant and black and until the 1890s only the destitute entered leprosaria, patterns of institutional segregation followed class, gender and racial lines at various times. This study has used historical maps and documentary sources to understand the choice of an island for a leprosarium, the spatial organization of the Robben Island leprosarium, and the reuse of leprosarium sites after the institution was closed in 1931. Few other studies have tried to understand a leprosarium within such a broad spatial and historical context. This analysis has highlighted (a) the perceived suitability of island locations for exclusionary institutions (prisons, leprosaria, mental asylums) within a discourse of liberal governance but segregatory pressure; (b) how the choice of island sites (first old stables at the edge of the village, later wards north of the village), and the reuse of early sites (as workshops) but the ritual desecration of later sites, provide material evidence of growing concern about contagion; (c) how until the late 1880s, spatial reorganization rather than stricter regulation of the institutions was used to manage the 'troublesome' but technically voluntary leprosy patients; and (d) the importance of gender segregation within the leprosarium as a key touchstone for concern about disease transmission and patient control and a greater influence on the spatial organization of the hospital than racial segregation, which occurred relatively late and within existing gender divisions.

Week 8: Dr Sanjiv Kakar - College of Vocational Studies, University of Delhi
osanjiv@yahoo.com

Leprosy in India: the Unique Role of Oral History

This paper will look at applications of oral history in interrogating colonial discourse and building an historical archive, as well as providing accurate documentation of ground realities for present day medical interventions and formulating and enabling
rehabilitation programs. I shall argue that oral history has a unique contribution here. I will also examine assumptions about the role of the interviewer in a first world context and see how these sometimes need radical modification when we practice
oral history elsewhere on the planet.

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Interactive Maps
Posted on 12 February 2003

There is a new page on this website, Interactive Maps. Select a map from the contents list, and the chosen page will display a map with clickable areas. For example, there is a map of the Leprosy Commission's route in India, 1890-91. When the cursor is over certain place names, you can click on these to be linked with the relevant entry in our database. Visit the map contents page to see other maps available. We will be adding more to this list over the coming weeks.

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16th International Leprosy Congress - Report
Posted on 27 November 2002

Overview

The 16th International Leprosy Congress took place 4-9 August in Salvador, Brazil. The ILA Global Project on the History of Leprosy organised an afternoon seminar session and a full day symposium, at which papers were presented in either Portuguese or English (the two official languages of the Congress). The unavailability of simultaneous translation in the symposium afternoon session led to a slight alteration of the symposium programme to ensure that papers in Portuguese were presented while translation was available. At the end of the afternoon, a discussion was held, during which aspects of the study of leprosy history were examined and avenues for further research were suggested. This was the first time that leprosy history was a major feature of this quadrennial Congress. Please visit the page of abstracts of papers that were presented over the two days. A publication of these papers, as well as additional articles and interviews, is being prepared for publication as a special edition of the journal, História, Ciências, Saúde — Manguinhos, published by Casa de Oswaldo Cruz.

Issues arising from the discussion

There were a number of areas discussed in which future research in the field of leprosy history would be valuable and interesting:-

• Comparison and contrast of leprosy to other diseases, historically, socially, epidemiologically.
• History of the politics of use of terminology to describe the disease and those affected by it.
• Investigation of the quality of data on the basis of which policy decisions were taken on controlling the disease.
• History of leprosy in the Middle Ages, as studied in the 19th century
• Influence of 19th century dermatology and the emerging differential diagnosis of leprosy
• Dapsone - after the introduction of this treatment, why was there such a time lapse before structures of exclusion and isolation broke down?
• Religious and institutional investments in the perpetuation of leprosy
• Empowerment of the person affected by leprosy, the patient voice, and the historical silencing of these. Validation and/or contestation of historical research by testimony and oral history.

Leprosy Archive Database at the Congress

The ILA Global Project on the History of Leprosy displayed the online database during the week of the Congress. With the help of the efficient technical team of HI Eventos, the website was displayed on a large screen in an area where there was a steady flow of Congress participants. Much interest was shown in the database.

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Leprosy in Brazil
Posted on 18 September 2002

You may be able to help us with some information regarding leprosy in Brazil. We are especially seeking information on the following points:

1. We have been collating information on the leprosaria that were/are in existence in each state, and have found a total of 60 so far:

We have gleaned some information regarding a number of the above places from articles by H C Souza Araujo and others, and we have detailed information on a select few, but nothing on others. If you know anything about the history of any of the above places, or can help us with the queries marked in red in the list above, we would be very interested to hear from you.

2. We would like to locate the archives of these places. If you have any idea as to where these may be, please get in touch with us: leprosy.history@wuhmo.ox.ac.uk . There will also be records pertaining to these leprosaria in the collections of doctors, missionaries etc. associated with them, so if you know of any such people, and/or where their records may be held, please let us know.

3. We are interested in the history of 'preventórios', the places to which the children of leprous parents were sent. Any information on these would be most welcome.

4. We are also interested in institutes, laboratories etc. where research has been carried out on leprosy, and would like to located their archives. We have information on the Oswaldo Cruz Foundation and the Souza Lima Institute, but would like to know if there were/are any other places where important work was carried out on the disease.

5. If you have worked with leprosy in Brazil (or anywhere else in the world), you are likely to own a personal collection of letters, papers, photographs and other such items. This constitutes an archive and forms an important part of the story of leprosy that must not be forgotten. We would like to enter your collection on our database, and would be glad to hear from you.

If you have information regarding the above points, or are able to help us locate archives, leprosaria, etc. in any part of the world that we have not yet included in our database, please do not hesitate to contact us.

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