DOI: 10.17903/fk2/d5wjte
title: Confinement, stigma and biographical trajectories. Spinalonga Leprosarium (1903-1957) as social institution and as lived experience

description: This work studies, combining written historical evidence, life stories and participatory observation, the Spinalonga leprosarium (1903-1957) as a specific social institution, which was the end result of more comprehensive economic, social, administrative and cultural processes. In particular, in the context of the tradition of micro-sociology and a variety of methodological techniques of qualitative research, the microcosm of lepers that lived in Spinalonga as an organized and distinct community with complex and multifaceted levels of organization of daily life and social interaction are analyzed. At the same time, the consequences of long-term inclusion and social stigma are explored, especially in relation to the way in which these experiences, which refer to phenomenology, symbolic interaction and ethnomethodology, become the subject of inter-subjective interpretation and meaning. At the same time, the interpretive reasons and social practices that are formulated around the medically certified patients and the specific disease are examined in a methodical way. Applying critically theoretical thoughts, proposed by Goffman in his classic work Asylum (Evryalos, Athens, 1994), to understand stigmatized and discredited and social microcosms, the work first places its research concern in the world of confined patients. In the second phase, it describes the stages of their ethical career, namely the "pre-hospital" and the "in-hospital" phase. According to the analysis of the empirical material, the first phase (pre-hospital) corresponds to a "normal before" while the second (in-hospital) to a "sick after". The overall research took place in various places (mainly in Athens, Chania, Heraklion, Agios Nikolaos and Spinalonga) but focused - at least in terms of collecting biographical material - on the Social Rehabilitation Center of Hansenika (K.K.A. X.), in the area of ​​Agia Varvara, Attica, a hospital to which the remaining Hanseniks of Spinalonga were transferred. The basic research techniques used to study the microcosm of lepers came from the field of qualitative methodology and concerned primarily: (a) historical material from various sources (eg legislation, written testimonies from various newspapers and magazines of the time, medical texts, etc.), (b) life stories from people imprisoned in Spinalonga, with an emphasis on four specific cases analyzed in great detail, (c) literary texts of the time and autobiographies; (d) semi-structured guided interviews by relatives of Hansenians who lived on the island, by health professionals (nursing and medical staff) and by support staff of the K.K.A.H. (e) field notes from participatory observation and the author's overall experience during field research. The main research hypotheses were the following: (a) integration into an eradicated social microcosm, the result of the experience of confinement and chronic illness, entails harsh, but negotiable, social discrimination and cross-subjective boundaries. These processes of medical identification and certification, as the starting point for the formation of a defined and localized community with empirically recognizable characteristics, contribute in many ways to the gradual transformation of individuals from "healthy" to "sick", ie subjects-carriers of a negative social identity, which constantly converses with any social participation or reintegration projects and any margins for social action. (b) the experience of leprosy, the long stay in institutions, of different geographical and content character, with particular characteristics and the consequent social stigma of a particular microcosm are not an easily manageable and painless life experience, which can be overstated without obvious and latent rupture points and section in the biographical composition of the subjects. The creation of corresponding institutions is largely connected with the gradual domination, economically and culturally, of the Christian "bourgeois" social groups in the Cretan State (1898-1913). It presents as a final result a progressive change in the ways of understanding, interpreting and practicing the disease in general, and leprosy in particular. Mr. Savvakis's dissertation critically studies the historical, social and cultural conditions that led to the rise of medical science and the medical profession as well as the prevalence of a biomedical conception of the body and disease. In the light of an interpretive micro-sociology, the stigma, as a proof of disability, as an imprint of diversity, and as a constant struggle to relativize these characteristics, is understood as an arena for meeting different levels.interests. Consequently, it is indelibly inscribed in the biographical reserve and the daily life of the subjects, which create distinct social worlds of devaluation and marginalization, even as an attempt to overcome and mitigate such consequences. In other words, the social stigma is maintained even when it is annulled, to the extent that the process of challenging it is often hindered by a network of regulatory standards, which regard "extinct" social groups as a quasi-risk of disrupting "normality" and social order. The doctoral dissertation is divided into three parts and includes a total of nine chapters. Apart from the preface, which briefly describes the topics the study deals with and the introduction, which presents the topic to be explored and some more general introductory thoughts, the rest of the work is divided into three interlocutory parts. The first part analyzes the overall theoretical and methodological options of the study. In the first chapter of the first part of the study the central working hypothesis is developed. This concerns: (a) a critical historical and sociological examination of the conditions and conditions that facilitate the establishment of institutions that embrace discrimination and social boundaries, such as the Spinalonga leprosarium and create stigmatized and discredited microcosms; and (b) the qualitative investigation of the possible ways in which the experience of chronic illness, long-term inclusion and social stigma are interpreted and experienced on a social and inter-subjective level. In the continuation of the first chapter, quantitative data and medical information regarding leprosy are reported as well as a series of older and modern statistics and demographic data on the current state of the disease in Greece, Europe and the rest of the world to show its comparative size. issue. The first chapter of the first part analyzes the theoretical views around the disease, the body and the stigma, in accordance with the established tradition of micro-sociology. According to Mr. Savvakis's proposals, social stigma is associated with conflicting and multi-layered conditions insofar as it concerns issues of unequal distribution of social positions, resources and power and at the same time constitutes a disadvantaged way of living oneself. In a later stage, the study analyzes the interpretive patterns that exist for leprosy from antiquity to the present day as well as the broader perceptions of the disease from the 17th to the middle of the 20th century. The main contribution is that a gradual transformation of the ways of treating and interpreting the disease is detected. At this point, the work uses thoughts and analytical tools from the whole of Foucault's work, with an emphasis on the archeology and genealogy of scientific power, and the techniques of the self. He argues that especially the creation of medical science and the institution of the hospital are related at the same time to practices of regulation, control and normalization of bodies and their functions. They are also associated with "truth regimes" that reproduce new universals and with forms of knowledge that intensify mechanisms of power and surveillance. Finally, in this section, the dissertation analyzes the experience of chronic disease (eg leprosy, HIV, etc.) and the suffering body in relation to attempts at devaluation and social stigma and suggests - following Goffman - that stigma, concerns primarily an unequal social and psychological relationship, in combination with any of its "biological" characteristics. In the second chapter of the first part there is an introduction, which summarizes the epistemological issues and analyzes the basic methodological proposal of the dissertation. This is summed up in the fact that the biographical method is potentially a privileged way of accessing value codes, interpretive schemes and experiences of specific social groups, but needs to be reinforced on a case-by-case basis with historical and other evidence to give a more complete reconstruction of the interpretive horizon. experienced experiences of the actors. The study then proceeds to a brief review of the history of the biographical method and a critical reconstruction of the relevant methodological discussion. The dissertation substantiates the view that the increased interest in the biographical method was the result of both a broader epistemological demand for interdisciplinarity and a more general political step towards democracy. This concerns a tendency to enhance scientific knowledge and voice performance in social groups whose experiences have been systematically neglected by formal research. In a next stage, the paper critically presents the multiple arguments that exist in the modern literature and refers to the characteristics, the advantages and the limits of the biographical method as a technical interpretive understanding of specific research areas. The basic finding is that the inter-subjective and structural dimension of the social constitute persistent aspects of every phenomenon. Therefore, it is impossible to have a sociological understanding and interpretation that articulates claims of scientific validity without analyzing, as far as possible, the conflicting, or consensual, co-intersection of this complexity of social relations. The third chapter of the first part, presents in detail the specific research and methodological options and mentions the various issues that arose during the empirical research. In a next step, the various sub-stages of the field research are described, their technical characteristics, the limits of the biographical material, the process of analysis of the biographical narrative interviews and the analytical tools used are justified. The main goal of this section is to theoretically establish and empirically highlight the specific use of narrative material as: (a) recording and crystallization of broader subjective actions, collective actions and social processes; (b) as an interpretive reconstruction of the past by the actors themselves. The second part of the study analyzes the historical, social and cultural context in which the founding of the Spinalonga leprosarium is placed and in part the life stories of the participants in the research. After a short introduction, which summarizes the priorities and key issues analyzed, the paper analyzes the historical material, ie the written evidence. In the first chapter of the second part the study focuses on the period 1878-1957. Describes the historical, diplomatic and political events that led to the founding of the Autonomous Cretan State (1898-1913) to give the general surrounding atmosphere and the overall climate of the time, the result of which is the formation of a structure in which faces are detected. of a self-governing state entity. At a second level, the processes of rationalization and modernization that took place in the Cretan State are analyzed in order to study the priorities of the emerging Christian groups of the time and the peculiarities of this process. Next, the study examines the institutional framework, public policy and ideological goals of the Cretan State. Finally, it investigates the logic and policies followed by the administration for public health in relation to the corresponding logic and policies, which prevailed in independent Greece at the same time. In the second chapter of the second part, after a brief introduction to the subject, the work examines leprosy in Crete from antiquity to the middle of the 20th century and the Spinalonga leprosarium (1903-1957) as an "exemplary" social institution for the treatment of disease, especially during the period of the Cretan State (1903-1913). The paper comparatively analyzes the treatment of leprosy and other endemic diseases in the period before the Autonomous Cretan State and especially the period of the Venetian and Ottoman administration of Crete to understand the transformations in the ways of practical treatment and interpretation of the disease in different historical . The study also analyzes extensive excerpts from the relevant debate in the local press and the Cretan Parliament regarding the issue of establishing a leper hospital. In a later stage, the Spinalonga leprosarium is investigated as a model for treating the disease. Specifically, the operating conditions, the conditions of its formation and the founding institutional acts as well as other regulations that concerned it are examined. The management, the staff and its patients are additionally analyzed, as presented through a plethora of written documents, historical sources and official documents. Finally, in the third chapter of the second part, the work presents in detail the life in the institution during the period from the integration of Crete in Greece (1913) until the end of the Occupation (1944) and from the end of the Occupation until the end of its operation ( 1957) and the compulsory transfer of patients to the Athens Anti-Flight Station. The third part of the study, which includes a wealth of primary and secondary empirical material, basically analyzes the life stories of people trapped in Spinalonga and created the microcosm of patients. Four different cases of interpretive appropriation and management of disease, inclusion and social stigma are presented in detail. On a complementary level to the previous analysis, the four life stories are enriched with: (a) Excerpts from the autobiography of lawyer Remountakis, who is incarcerated was a patient during the Metaxa dictatorship and seems to have played a pivotal role in transforming patients from "resigned" individuals into an active community with rich political action and specific demands on the central government, (b) excerpts from literary books, written during the period of operation of the institution and related empirical material, as contemporary testimonies of the time that reconstruct in their own way a social reality; (c). Oral testimonies of relatives and people who worked in the leper hospital or had commercial and social relations with patients. Before analyzing the four life stories, the study quotes, following an anthropological logic, a dense introductory note of ethnographic type, which describes the social characteristics of the narrators. In this note, the differences and similarities of the narrators are mentioned and the reasons are chosen for the specific four different models of biographical action. The aim was to form one as far as possible - a complete axis of understanding of the microcosm of the Hansenians, in general, and in particular of the interpretive schemes and the corresponding social action of the narrators. Based on the above, in the first chapter of the third part the work describes the life of all the narrators before the diagnosis of the disease and their confinement on the islet. It highlights their social background, their economic and social relations before inclusion, the diagnosis of the disease and the transition to the islet. More specifically, this first chapter of the third part of the dissertation examines the way in which narrators form their relationships within a microcosm of illness and social marginalization. In a next stage, it is analyzed that they experience the process of medical certification of the disease, a process that is very important, insofar as it is the starting step and the legitimizing principle of their classification in a stigmatized social world. Finally, in the light of previous observations, the passage to the islet - as a place of social isolation of medically certified cases of leprosy - is mentioned, and the reception reserved by the already confined patients to the "newcomers". Finally, the study points out that the procedures of medical confirmation of the disease, transfer to the area of ​​isolation and reception by those already established, complete and ritually validate the first stage of introduction into a new grid of practices and representations, ie the introduction to a new micro incarcerated patients. Then, in the second part of the third part, the work explores in depth the wedding practices and celebrations as well as the family relationships in the community, which seem to be a key dimension of the way in which it is created, and the daily life of the "enclosed of life ". In addition, the provision of medical services to patients is studied and the restrictive nature of the institution and the inadequacy of medical measures as well as the gradual transformation of the islet into a living and active collective are excluded. In direct relation to the previous one, the study also presents the surveillance and social control in the community in order to emphasize mainly the strict and extremely stigmatizing nature of the incarceration and the simultaneous internalization and radical denial on the part of the narrators of the dominant definitions regarding their identity and place on the social map. In addition to the previous issues, in this section, the experience of occupation by the Germans and the Italians is comparatively analyzed. From the discussion of the empirical material it appears that within the community differences and distinctions emerge, which follow an obvious geographical definition. Consequently, the work studies the conditions and conditions of the formation of internal divisions based on the geographical origin of lepers as well as their social functionality. The analysis of the community relations with the staff of the institution - an issue that is the next topic of the study - forms a key to interpretive understanding of the multiple levels of communication between patients and employees in the social institution and captures the multiple, positive and negative, manifestations and representations of social prejudices in daily interactions and in social memory. Finally, in this section, the work explores a constituent component of life in the microcosm of patients, which concerns the relationship of the Hansenians with the Orthodox Church both in terms of the reception and interpretation of its teachings and in terms of daily practices. The key element that emerges is that the community maintains an increased degree of religiosity, as an axis of cohesion and solidarity, and relationship with the Orthodox Church. she does not insists on a rigid ritual protocol but primarily uses the socializing dimension of religious gatherings. At a second level, patient religiosity appears to have a positive effect on the way the State, the Orthodox Church, and medical science address patient care, treatment, and claims issues. In the second chapter of the third part, the study explores the social organization and characteristics of life in Spinalonga, analyzing the speech of the subjects themselves and framing it with historical material. It examines successively the economic and social relations, the family relations and the "honor" of women, the wedding practices and the celebrations, the medical care, the supervision and the social control, the period of the Italian and the German Occupation, the distinctions that are made on the basis of different geographical origins, the relations of the inmates with the staff of the Spinalonga leper hospital and finally the presence of the church within the community. It also describes in detail the economic and social relations of patients with the healthy community to demonstrate on the one hand the central characteristics of the social world under study, its practices and perceptions on the other hand to emphasize the processes of gradual transition from the identity of the "normal person ”in the identity of the“ incarcerated and discredited ”patient. In the third chapter of the third part the work explores the importance of the experience of illness, inclusion and social stigma, the different ways of interpretive appropriation and management of similar situations and the different ways of constructing the subjectivity of people who have lived similar experiences through comparative analysis. different cases, which confess with different models of biographical action. Having previously comparatively analyzed the central issues of life before illness and confinement, but also the main issues of daily life in the community as presented by the narrators themselves (first and second chapters of the third part), the dissertation analyzes four different models of biographical action. , which are associated with four different ways of recording the experiences of illness, inclusion and social stigma at a subjective level. More specifically, the case of Pavlos is connected with the biography of a man born in a village in Crete, with a relatively high economic and cultural capital. To the narrator, the disease is medically confirmed, while he is attending high school and in the course of his biographical career he is elected a representative of the Hansen community, that is, he has an official trade union status. He also develops a profitable commercial activity, has the experience of the outside world and his movement in space follows an alternate route (from the Anti-Left Station to Spinalonga, back to the Athens Anti-Leap Station, out to the world of the "healthy" and back to the Anti-Left Station Athens). Self-presentation is built around the values ​​of collective well-being, social recognition, the promotion of subjective diversity, profitable business activity and contribution to the collective. The microcosms to which the biographer belongs are hotbeds of resistance against the negative effects of disease and inclusion. Sickness and incarceration provide, albeit imperfect and limited, incentives and opportunities and constitute experiences that ultimately lead to social recognition, appreciation and respect. In other words, they are not presented as experiences that completely nullify the margins of individual action and crush and flatten the subject. The case of Iphigenia highlights the biography of a woman who was born in Spinalonga to sick parents, never gets sick, but remains in her life in the Spinalonga leprosarium and the Antiepileptic Station in Athens, because she was considered medically a carrier of the disease. The narrator has relatively low economic and cultural capital and has nothing to do with collective representation processes. Birth in the institution acquires on a subjective level the character of a central lived experience. The subjective attitude lies in the gradual shift to a strategy of resistance and self-promotion against social coercion and the "musts" emanating from its social environment. The experience of incarceration on the island and social stigma are presented as positive experiences that are recalled with a sense of nostalgia and joy, giving life to the institution the character of "living in a village" and ultimately not subject to negative evaluation and repulsion on a subjective level. The case of Georgia is related to the biography of a woman who is born in a village of Ierapetra, is orphaned by her mother at a very young age and is forced to work with her other sisters to contribute to her family finances and does not complete primary school due to the war and the Occupation. Later, she was confined to Spinalonga, where she married a fellow patient and had three healthy children, and when the leprosarium closed in July 1957, she was transferred to the Antileprian Station in Athens. According to the candidate, the diagnosis of the disease at a very young age, the uprooting from the hearths of intimacy, the lie and the long-term confinement on the islet acquire on a subjective level the character of central experienced experiences. Incarceration in the institution rearranges curriculum vitae and redefines any choices. Illness and inclusion are presented as events that drastically affect the subject and add to a host of incidents of pain and unhappiness. Andreas's case concerns the biography of a man born in Samos to poor parents of rural origin. He was a member of a large family with four brothers and the only child, who eventually fell ill. His mother was a carrier of the disease and the medical confirmation took place when the narrator was two years old. The bearer of the biography was initially confined to the Samos beehive and later transferred, due to unruly behavior, to the Spinalonga leprosarium. Later, he moved to the Anti-Leprosy Station in Athens, where the interview took place. The narrator married twice and had no children. The experience of illness, inclusion and social stigma are presented as events that are not central and do not force a "turn to self". Given the inclusion, illness and social stigma, the body of the biography constitutes a subjectivity that takes care primarily of raston, relaxation, leisure and party, fun and well-being, that is, sociability and meeting with others. . Illness and confinement eventually tend to form a strategy of seeking a "bohemian" and "hedonistic" way of life. The study closes with an epilogue, which codifies the most important conclusions of the work. In the epilogue, the overall relationship between the four life narratives with broader issues of stigma microcosm formation and their inter-subjective meaning, chronic illness, long-term inclusion, stigma and social transformation is assessed and some further areas of empirical research are suggested. The main points of the epilogue, which, in a way, are the central findings of the dissertation, concern: (a) the historical uniqueness of the Spinalonga leprosarium, which is more of an organized microcosm of patients with multiple internal divisions and less of a classical leprosy colony or a typical all-inclusive western asylum. This social world has the characteristics of an ordered daily life, which includes quarrels, love affairs, consulates and marriages, a sense of relative freedom and self-determination, moments of relaxation and leisure, internal differences and alliances as well as elements of self-organization, capacity, strong claim. and patient resistance. (b) the analysis of the particular characteristics of this particular microcosm, which is clearly related to the ways in which subjectivity and self-presentation of the four different cases-models of biographical action analyzed by their resistance projects and the issues they choose to address . From the analysis of all the empirical material, it appears that the daily life in the community ultimately retained aspects of the life of a village, that is, it contained elements of an organized "small state". These elements of banquet, entertainment, raston, leisure, erotic claim and quarrels which are intensely themed in the life narratives that are analyzed, finally gave the state of illness, inclusion and social stigma and positive aspects, mitigating and relativizing to some extent their disorganizing consequences. The epilogue is followed by an appendix, which contains information regarding the existing institutional framework of leprosy in Greece. It also mentions in detail the sources and types of empirical material used and contains summary tables with the social characteristics of the narrators, the duration and the volume of the biographical-narrative interviews. In addition, the appendix contains all four life stories that have been analyzed and extensive excerpts from legislation and publications in the local press about the disease, the Spinalonga leper hospital and photographs from the current state of its facilities.