A world-wide project to value the struggle of Fontilles against exclusion and oblivion
In the year 2016 Fontilles and the University of Alicante with the collaboration of the Sasakawa Health Foundation launched the project for the preservation of the historical heritage of Fontilles. The project had a double goal, on one hand, to protect its heritage, taking the necessary steps, in some cases, without delay, for its conservation and protection against the pass of time and secondly, to present that legacy to the society, as an example of the struggle against social exclusion in the 21st century. The project has an enormous historical and scientific value has a result of over a hundred years work carried out by Fontilles in Spain in the fight against leprosy, a politicized and stigmatized disease, like no other and that reflects and collects all the social, economic, cultural and religious elements of the history of Spain during this period of time. We cannot ignore that although leprosy is no longer a public health problem in Spain and is practically eradicated in the world, its consequences continue. Over 6 million people are affected with disabilities due to the disease all over the world, and thousands of individuals are excluded from society by laws still in force that marginalize and limit the rights of those affected by the disease. In addition there are cultural and social considerations, some of them rooted in ancestral myths or unjustified fear that contribute to the discrimination of the affected individual. In this sense, we firmly believe that our legacy, as well as that of many other leprosaria around the world, with which we join our efforts can and must become a powerful tool to fight against all kind of discrimination and social marginalization, whether caused or not by leprosy.
Fontilles, for more than a hundred years has been home to thousands of people affected by leprosy, exactly 2,617; of which 23 still live in the sanatorium together with volunteers, Franciscan sisters, Jesuits and Fontilles staff members. All of them separated from the rest of the world by a wall that surrounds the sanitary complex, turning it into a small city. The institution has its own life, with a rich heritage not only material, documentary or human, but also of impressive landscape and architectural significance.
In this sense it is important to highlight as an immediate antecedent of the Historical Archives project, the work carried out between 2014-2016 for the integral recovery of the architectural and landscape complex of Fontilles. It was promoted by the Instituto de Restauración del Patrimonio and coordinated by Professor Jorge Llopis Verdú and his team from theDepartamento de expresión Gráfica Arquitectónica de la Universidad Politécnica de Valencia. The project concluded with the publication Arquitectura y paisaje en el sanatorio de Fontilles.
This publication presents part of the results of the research project entitled “The Sanatorium of San Francisco de Borja de Fontilles. The aim is to have an analysis model for the comprehensive recovery of health complexes of patrimonial value”. The objective was to develop, taking the Sanatorium of Fontilles as a model, an integral methodology of interpretation and enhancement of our historical heritage. The project aimed to reconstruct the architectural history of Fontilles, its image, the disappeared buildings and reinterpret its landscape, mainly its heritage.
Another antecedent to this project, of vital importance for obtaining all the documents that form the historical archive of Fontilles, comes from the research initiated in 2008 by the historian Vicent Comes Iglesias who together with Verónica Mas, the Fontilles librarian, on occasion of the 2009 Fontilles Centenary, compiled, ordered, classified and studied all the documentary material in the sanatorium. This research concluded in the publication of Cuidados y consuelos: cien años de Fontilles, edited by the Valencian Library in 2009 and that describes the history of Fontilles between 1909 and 2009. This enormous amount of documentation was at the time, and during the following years, organized carefully by the Jesuit Carlos Sancho, director of Fontilles until 2014.
The next important issue for this project to be a reality today, is part of the collaboration agreed with the Departamento de Enfermería Comunitaria, Medicina Preventiva y Salud Pública e Historia de la Ciencia de la Universidad de Alicante, with which Fontilles had previously collaborated and still continues in different research and training projects for university students. Within the framework of this agreement, professors Antonio García Belmar, Project Director, and Josep Bernabeu Mestre, together with the technical and medical staff of Fontilles, prepared the proposal for digitization and enhancement of the historical archive that has been in place since 2017 with the support of the Sasakawa Health Foundation (SHF). The SHF was founded in 1974 with the aim of eradicating Hansen’s disease, also known as leprosy, from the world. Its co-founders were Ryoichi Sasakawa (1899-1995), founder of the
Nippon Foundation, who was the first president of SHF, and Professor Morizo Ishidate (1901-1996), known as the father of chemotherapy for Hansen’s disease in Japan.
As we explained previously, the project started in 2017 and one of its first decisions was to increase the number of partners in order to achieve a greater impact and dissemination of the results obtained and at the same time, obtain the collaboration of professionals specialized in issues relevant for the success of the project. At this point, it is important to highlight the collaboration of The taller Digital from Universidad de Alicante. This department did the entire process of digitization, digital publishing and electronic publication of the documentary heritage of Fontilles and the Biblioteca Virtual Miguel de Cervantes, the largest library in the Hispanic Letters Network and the most visited literary website in Spanish in the world. It hosts all the digitized material that since March 2019 is accessible to all those interested in the portal that the BVMdC has dedicated to Fontilles as the central part of this project.
Finally, in this unfinished process of creating a network of actors that allow the project to grow, we must mention the Biblioteca Virtual de la Prensa Histórica. This virtual library has shared and enriched the project with digital historical documentation of Fontilles that with the passing of the years had been lost and this project enabled to recover. The Associació d’Arxivers i Gestors de Documents Valencians provided technical advice during the production phase of the historical archive.
The Sanatorium San Francisco de Borja de Fontilles is a pioneer since 1902 in the treatment of infectious diseases associated with poverty and social exclusion. For more than 105 years, the sanatorium has pioneered in Europe the fight against leprosy, developing policies that cover all areas of action in the prevention, treatment, development of medical therapies and implementation of social integration programs and the fight against marginalization and the uprooting of those affected by this disease. At present, leprosy is virtually eradicated from Spain and the institution has directed its actions towards the fight against leprosy in endemic countries and is implicated in scientific research studies for the procurement of novel strategies for prevention and treatment of the disease.
The experience gained in the Sanitorium of Fontilles throughout the twentieth century and the beginning of this century, can be considered a valuable heritage from various points of view. The legacy of the Sanatorio de Fontilles is the memory of the fight against poverty and the social discrimination in Spain in the last 100 years. The archives of the Sanatorium contain valuable documentary information of this fight against the disease and its discrimination, constituting a fundamental reference for researchers to analyze. Fontilles is a unique case in Spain of an autonomous model dedicated to research, medical treatment and development of policies of social integration of the chronically ill in a normalized and self-sufficient social structure. The medical archives of the sanatorium are a legacy heritage essential for the study and knowledge of the history of medicine in Spain with similar characteristics to St. George’s Hospital in Bergen whose funds are referenced in the UNESCO’s Memory of the World Programme. The organization, systematization and availability of researchers in the history of Medicine in Spain and Europe should be the basis for a Reference Center for the Study of the History of Leprosy, which is part of the objectives of adapting the Sanatorium of Fontilles to these new needs of intervention.
The results obtained to date (2017-2019) in the process of recovery, cataloging and inventorying and digitalization of paper documentation, allow us to classify the results obtained in three large groups: (i) digitized documentation and open to the public through the portal of Fontilles y la Lepra en España; (ii) digitalized documentation not accessible to the general public due to ethical or legal issues related to data protection and (iii) digitalized documentation available to researchers in paper or digital format upon formal request to Fontilles.
Fontilles Historical Archive can be classified into the following major groups:
The photographic archive is composed of two large series. The first is a collection of approximately 1400 photographs and postcards presenting images of the institution, from 1903 to the 1990s. It reveals information on physical spaces and buildings, interiors of clinics, laboratories, hospitals, residences, workshops, scenes of the patients working and ludic activities, leprosy training courses, visits of authorities, associations and illustrious personages and portraits of the medical, religious and welfare personnel of the institution. All are black and white images and are thematically classified in twenty archival boxes, digitized and cataloged in a database developed during the project´s execution phase.
The second series is the archive of clinical photographs, an indeterminate number of photographs of lesions, microbiological observations and portraits of patient with no classification. Its content is of enormous scientific interest, but possibly limited to a specialized audience.
Besides this main collection, there are some private but less numerous collections, of great historical value, such as one with 50 photographic glass plates showing images of the arrival of the first patients at the Sanatorium and microbiological observations made from samples of tissues.
This photographic archive increase if this project is consolidated and expands in the following years, either by the location of new photographic series or because of donations from people affected by the disease who want to leave testimony of their experiences through the preserved images.
In this link of Portal Fontilles y la lepra en España the photo gallery can be accessed. The photographs collected in this gallery come from the Fontilles Photographic Archive and have been selected for their technical and artistic quality or for the information they provide. To facilitate their consultation, the images are classified in three groups representing the organized areas of the sanatorium and the life of the people who lived there. They represent entities separated men from women, “healthy” people from “sick” people and the inner world from the outside world.
135 drawings of the buildings of Fontilles have been digitized with the collaboration of the Universidad Politécnica de Valencia and can be accessed in the portal Fontilles y la lepra en España.
The documentation included in this gallery is a sample of the collection of architectural projects preserved in the Archive of Fontilles. Through them, it is possible to understand the conceptions surrounding the disease and its treatment, which determined the design of the buildings and their spatial distribution. As well as the way in which the separation between men and women, between “sick” and “healthy” people and between the intramural space and the outside world materialized and was reflected in the urban and architectural design of the sanatorium.
The Fontilles Review appeared in 1904 under the title La Lepra and published monthly from 1910 up to the present days, with the only interruption of the Spanish Civil War. Up to the year 1990, 860 numbers, in format 26 x 17 cm and with an average extension of 10-15 pages in the first decades and of up to 35-40 pages from the 1960s have been published. It was aimed to disseminate the activity of the sanatorium and to serve as a tool for fundraising, since it was distributed by subscription to thousands of families from all over Spain. It described the daily activity of the sanatorium and the life of those who inhabited it, as well as the image transmitted by leprosy, its treatment and the social reintegration of patients. It also contains abundant testimonies, writings, songs and poems of those affected by the disease.
All of the copies between 1904 and 1991 are available in the Portal de Fontilles y la Lepra en España.
Together with this publication, Fontilles, since 1944 also publishes the Revista de Leprología, which describes the scientific and medical research carried out in the laboratory and clinic of the institution and by other researchers around the world. It is a fundamental and unique source for understanding the discovery and administration of the first effective drugs, in the early 1940s and the actual triple therapy developed in the early 1980s.
All copies between 1944 and 2004 are available in the Portal Fontilles y la Lepra en España.
The Fontilles Archives preserves in approximately over two hundred archival boxes a complete collection, obtained over a century, of handwritten record books, the complete documentary history of the institutions, accounting, patrimonial, medical, scientific, religious and social activity. The Medical Archive included in this document contains information of the nearly 3,000 people individuals diagnosed of leprosy in the institution since its opening in 1909. There is also an indeterminate amount of documents from the clinical and scientific activity of the old laboratory (inaugurated in 1922 and closed in 2000 due to damage to the structure of the building), composed of treatment records, laboratory notebooks, reports and files, statistical graphics, etc. This project has enabled to classify the documentary collection and store it in a safe place that permits public access to researchers. The archive is partially digitalized and we have prioritized the documentary and testimonial series of special historical value, such as the collection of plans and maps, composed of 135 drawings, sometimes containing technical reports of the architects that offers information about its design and their intended use. In addition, there is a series of statistical studies carried out in the 1960s, through an original system of collecting clinical, social and cultural data of the patients treated in the sanatorium since its foundation, represented in tables and graphs drawn and colored by hand by the sanatorium technical staff. They are collected in a dozen notebooks of between 40 and 50 pages, some of them foldable.
The Fontilles Sanatorium functioned for decades as a walled surrounded city in which its inhabitants carried out different types of activities. In addition to those related to clinical-pharmacological treatment and scientific research, Fontilles had workshops dedicated to different trades, a printing press, a theater, a music band … In addition to the documentary trail left by these activities, some of the activities have also been preserved including the objects that occupied the leisure and work spaces in which they were developed. The material heritage has received less attention, due to the physical difficulties that its conservation entails. It´s dispersed in numerous dependencies, many of them abandoned, without a minimum estimate of its size. The project has allowed locating all these materials and make a selective recovery and first inventory. All this is subject to the possibility of creating a warehouse and eventually a museum that allows us to expose to the public the history of Fontilles and the fight against leprosy.
Finally, within the project, we have dedicated a space to the immaterial archive, that is a section to collect oral testimonies of people affected by leprosy who have passed away or still live in Fontilles. Professor Antonio García Belmar has directed this oral history project, aimed at reconstructing the life stories of people affected by Hansen’s disease who spent part of their lives in Fontilles. It has begun with those who still reside in the sanatorium and intends to expand the project to other former residents of Fontilles still alive, as well as their closest relatives. The objective of this work is the publication of a monograph that collects the testimonies as well as the electronic edition of the fragments of the recorded interviews, corresponding to the texts transcribed and published in book form. With this project, we want to join forces with the Oral History project of the ONG IDEA for the recovery of the dignity of the people affected by leprosy and the defense of their human rights.
In 1997, Fontilles hosted the international conference organized by IDEA under the title “The last leprosarium in the world and the people who call it home”. This conference created The International Coalition of Historical Sites of Exclusion and Resistancestóricos de exclusión y resistencia, joined by Fontilles. With this project, we want to keep alive the memory of all the people who passed through Fontilles and as a symbol of struggle against injustice and social exclusion in the world.
This project joins the Global Leprosy History Project promoted by the International Leprosy Association, a web page dedicated to the history of leprosy that, among other important resources, has a database that allows anyone interested in the history of the disease the identification of the files related to this subject in any country in the world.
For more information about the project and the historical archive, you can contact email@example.com or firstname.lastname@example.org