History, Intertextuality, and Social Power Leprosy and Self-Understanding in Late 'I\ventieth Cen tury Greece

Some prel;en tationl; o f t h e h il;tory of leprosy c a n b e l;een a l; paradigmatic l;toriel; of how the knowledge of leprosy ha::; been conl;tituted i n a h istorical process. Con fl i ctl; i n the daily l i vel; of leprosy patientl; have aril;en al; a reo;ult o f two basica l ly oppoo;i n g stories. One em phas i ;r.e::; the conti n u i ty between leprosy in modern l i fe w i th its existence in an ancient past. The other emphas i ?.es t. he historical breaking points . These conflicting stories have diflerent repercussions as to which form of knowledge about leprol;y il; prod uced or reproduced. Power over the know ledge ofleprosy i s maintai ned l.Jy people that l.Jecome accomplices in these stor ies . This article demonstrates how a Greek woman who sutlers from leprosy incorporates her interpretations on history with her self-understanding. The an alys is shows how she transforms the pai n ful history i nto an e mbodied force using intertextual strategies. Two theoretical frameworks, folkloristic text anal­ ysis and discourse analysis in a Foucaultian sense, provide its points of departu re. The conclusion points to some of the consequences of a linkage between these two frameworks and shows that the intertextual strategies of leprosy patients can be connected to each . Th is assumes that in tertextu ality can be viewed on two analytical levels. One level concerns the strategic intertextual constructs of the leprosy suflerers. The other concerns the contexts of meaning in which these constructs are a part.

My thoughts about expressive strategies and the control ofhistory are based on my fieldwork between 1 987-1993 at a center for social reha bilitation of leprosy patients, in a suburb of Athens.1 According to the WHO , the spread of leprosy will definitely be able to be stopped by the turn of the century. However, in Greece, there are still a few men and women who undergo regular health controls as a result of the risk for a recurrence of the illness. The painful history of leprosy still lingers like a dark shadow over their daily lives. I did not realise this until I began my fieldwork and my own view of the history of leprosy was ques tioned by the people whose daily reality I had come to research. Before embarking on a project that is now a book (Drakos 1997), I had pro duced a radio documentary for Swedish listen ers about a now closed asylum for leprosy suf ferers on the island of Spinalonga, outside of Crete. I recorded an interview with two men who had been exiled there for many years , and who were subsequently transferred to facility in Athens. They participated, reluctantly, in the interview. Mterwards , I let some of the patients listen to a translated version of the radio docu mentary. Their critique was harsh. "The story of leprosy patients as living dead must finally come to an end", one of them explained. They did not want to be associated with the leprosy sufferers of a distant past. Discussions regard ing the history of leprosy were repeated in many forms during my subsequent fieldwork.
In this article, I will show how a Greek woman, who suffers from leprosy, incorporates her interpretation of history into her self-un derstn n d i ng. f w i l l d i HCUSS the history o f l e p roHy from two do m i n :. m t i n te rpretati ve pe rspectives . One emphasizes the hi storic continuity betwee n the ::;oc i a l exi ::;tence of l e pro::;y patient::; today with notion::; of l e p rosy i n an ancient past. Th e other emphasi zes the breaks i n h i storic conti nui ty. Wh en I speak h e re about the w ays i n wh i ch l eprosy patien ts co n t rol the i r h i story I refer to thei r ::; trategic rel ati on::;hip to the::;e two interpretative perspecti ves. Wh en 1 talk abo ut lepro::;y patien t�;' un der�;ta nding of �; e l f I am referri n g to how they create them::;el ve::; a col lective l, a su bj ect, which is l i nked to th e ways in wh i ch the o utside w o rld may m ake them into objects . I will discuss their construction of a subj ect in light of their i n tertextual strategies . This is also how I shall approach the ways in which the self understanding of leprosy pa tients is woven together with the constructi on of history (cf. Feldman 199 1 : 2). I shall soon solidify th ese ideas and demonstrate how their self-understandings and constructing of histo ry resonate in one proverb . But fi rst, l et m e sketch the historic backgrou nd.

Discursive B reaking Points
Despite recent medical advances, leprosy con tinues to be associated with outdated under standings of the nature of diseases. A decisive reason for this was that these medical advances took place in the context of the expansion and consolidation ofEuropean imperialism ( cf. Gus sow 1989). The first standard scientific work on leprosy was published in the middle ofthe 19th century, and in 1873 the cause of the illness was linked to a bacteria. The majority of the world's leprosy victims were in Mrica and Asia and not in Europe. Leprosy was, therefore, associated with the inhabitants of the colonies. As a result, attitudes towards people infected with leprosy were structured along the same class bound and racist categories that were applied towards the inhabitants of the colonies in general. The fear of leprosy in the industrialized west was based on fears that the illness would also come to taint Europeans . Leprosy was seen as funda mentally different from diseases of the west. The expansion of European imperialism at the end of the 19th century was followed by a rel i g i o u s ren a i s�; a n ce i n England a n d i n te n�;i fi ed m i ss i o n a ry work in the co lon ies. P r i o r to the en gage m e n t of m i ssionaries in colonial project�:� , the l i n k betw een the bibl ical and the med i c a l concepts of l e p rosy had not been a cen tra l i ssue for th e Christian chu rch . The i n te re�;t i n co n n ecti ng the two concepts res u l ted in a paradoxical situation . Fro m the middle of the 19th century an d onwards l eprosy repre �;ented, on the one hand, a more limited medical e ntity th a n before . On the other hand , leprosy i n corporated a l l of the con n otations o f b i b l ical l epro�;y since it was in the interest of the mis sions to view medical leprosy a�; biblical leprosy. A seri es of i nci dents poi nt towards the 1940s as another discursive breaking point in th e histo ry of leprosy. A central event that changed the conditions for how leprosy patients were viewed, was the creation of the fi rst etlective medi ca tion. From a medical point of view, leprosy became a treatable disease. The result was that patients were gradually released from the asy l ums. From a his torical perspective, the ad vances in medicine coincided with the autono my of the colonies in Asia and Mrica, the estab lishment of new, independent nations and the creation of the WHO . What about today?
Today's profound conflicts concern the dis crepancy between the ways leprosy patients present their own history and the ways it is represented in historical writing (cf. White 198 1:2 f). I am interested both in how history is constructed in the world surrounding leprosy patients and how they construct it themselves . The interests of the Christian missionaries, in the 19th century, to link leprosy in the colonies with the leprosy ofthe Bible, is just one example of an attempt, in modern times, to emphasize the historic continuity. But the Christian mis sionaries have not been alone in making them selves interpreters of such an unbroken history.
In reference books, journalism and literary work the leprosy of the Bible has also been used as an effective metaphor of continuity despite medi cal advances. The story of this continuous his tory has dominated the discourse on leprosy right up until the middle of this century. Since then, however, historic breaks in the history of leprosy have been emphasized. One example of this can be found in the Greek language where the term i n oso. tu Chri.n scn ( i .e. Hansen 's disease) i s now used i nstead of lepra. ( i .e. lepro sy) .
The interpretation of the h istory of leprosy has had consequences regarding the violence shown daily in the bodily and spatial practices leprosy su tlers arc subjected to . And now I come to the woman I mentioned in the introduction.
I call her Dina. She was in her 60s when I got to know her, and she emphasizes that things were worse back when she became sick as a twenty year old newlywed i n 1. 960. Sh e to ld me that her whole family became stigmati zed in the eyes of the villagers, and that her husband abandoned her. When the diagnosis was confirmed, she was admitted to the institution in Athens where I met her thirty years later. She had her bed and a few personal possessions in a large hall in the deteriorating women's building at the facility. She has never returned to her home communi ty. Dina's story demonstrates the tenaci ty ofthe stereotypes regarding the illness. But her self awareness prevented me from connecting her story with the ancient history of leprosy. The first time I visited the women's building at the center, in order to speak to the residents , it became clear that Dina was the women's leader. Everybody stepped aside and referred me to her. She positioned me in the middle of the sleeping hall on a rickety chair. She declined my suggestion to sit down, choosing to remain stand ing in front of me. In this position she encour aged me to pose questions so that she could answer. The other three or four women in the partially occupied hall sat during this time on their beds , forming our audience .

((0 pathos jatr6s"
The obvious way in which Dina made herself the interpreter for the women, and for other patients who were not present, made her narra tive both monophonic and polyphonic. The wom en who expressed their agreement silently or explicitly, contributed to the polyphony and so did the many voices that echoed in Dina's ways of speaking. In her narratives I heard the voices of medical science , the Greek orthodox church, the international leprosy mission as well as several others . And now I come to the proverb.
Early in o u r fi rst conversation, Dina let these voices speak th rough a proverb wh ich she sub sequently used several ti mes . On this occas ion she used a p roverb to reply to my comment that she must have had time to do a lot of reflection regarding her experiences with the illness .1 Dina: "Listen we have been living with it for years l yes l and you can hear people around you saying "The sutlcrer is doctor" ("0 rnath6s inejatr6s"). But we have a lso heard that from professor:; who have been passing through. The first pro fessor I met was Markianos, Joannis Markian os, who was the most renowned leprologist in all of the Balkans, and he travelled abroad to various conferences as a representative for Greece. There were others in his entourage, but for us it was the university lecturers, from the university extension service. Oh, on the fif teenth of every (month) a group came to visit.
Brothers of the weakest (Adelf£ ton elachis ton) Christian Orthodox, and they held lessons for us in the dining room where we all gathered. Each lesson ((was )) two hours long. The univer sity extension service. Oh, that was invaluable for us. Various Christian organizations also came from outside in order to enlighten us about their message. Urn, at the same time there were also many meetings and many pub lications (were distributed), and many parties were organized by the French missionary Raoul Follereau [I have heard his name mentioned] .
The French missionary Raoul Follereau be gan working as a seventeen year old [yes] .
And even though he studied to become , urn, a theater manager, or whatever it is called, he subsequently visited ((inaudible)) Honolulu. It was there that he saw people who he had just passed by in a vehicle driving into the forest. As soon as they heard the vehicle honk, they ran away and hid. And he asked "WHY?" And in that manner he made an impression on them and he changed his career in order that he could be (lowers voice) a missionary to the Hansen's disease patients . He also made annual visits to all of the countries in the world where there were hospitals for (lowers voice) Hansen's disease patients.
The econd person from the left i Raoul Follereau, the founder of the international lepro y day, visiting the sewi n g workshop at th e center for leprosy patients at Athens 1.96 1 .
And he came here to visit many times and we ate and drank. I shall show you a photograph where we are all together [yes, how nice] Yes." By using the proverb she articulated her under standing of self in relationship to how knowl edge about her disease has been controlled in different times . The most common Greek ver sion of the proverb is: " 0 pathos mathos". It means, literally, ''The sufferer [is] learned". In her version (which she reiterated on several occasions ) Dina replaced the word mathos (learned) with the word jatros (doctor). With her reformulation, " 0 pathos jatros" (The suf ferer [is] doctor), and her ways of embedding it in her speech, she turned the proverb into a significant part in a dialogic negotiation re garding the ways in which the ideas about the disease and its history should be interpreted (cf. Haring 1992:63 ff, Hasan-Rokem 1992, 1994.
Dina emphasized that she had heard many people use the proverb, including a famous leprologist to whom she often referred. So did many other patients . She suggested a meaning of the proverb by emphasizing the value of having had many years of personal experience with the illness. She also contextualized the proverb in relation to a series of contemporary events , the rehabilitation and education of pa tients, the mission ofthe Greek Orthodox church, and not least of all , the annual information campaigns held in conjunction with interna tional leprosy day. By letting these events frame "0 pathos jatros", she linked the proverb not just to actors in the contemporary, surrounding world, but also to a new and different discourse, that is to say, to a new understanding and a new way of speaking about leprosy compared to the older one.

lntertextual Strategies and Social Power
Dina's contextualization of the proverb is char acteristic ofthe expressive strategies of leprosy patients and of their attempts to control histo ry. I have found that a distinguishing character "Welcome our great protector" was w ri tten in French above the en trance of the centre for leprosy patients at Athens when the founder of the intern ational leprosy day arrived in 196 1.
is tic of the conversational conventions used by leprosy patients is that they distance them selves, intertextually, from past conceptions of their disease. In this respect I have been influ enced by Charles Briggs' and Richard Bau man's ( 1992) actor oriented problematization of genre and intertextuality. An important point in Briggs' and Bauman's argument is that inter textuality is not just about describing intertex tual connections and relationships , but rather it is about focusing the analysis on how such connections and relationships are created. I am referring to their co-authored article in the Journal of Linguistic Anthropology entitled, "Genre, Intertextuality, and Social Power". Leprosy patients' understanding of self -I am referring here to their constructions of a collective subject -have, since the mid 1950s, been interconnected with their desire to dis tance themselves, intertextually, from speak ing about the leprosy of the past. They have openly expressed critique of history during the annual information campaigns in connection with international leprosy day. During the most active years of the patients' movement in the 1950s and 60s, the central motto of the cam paign was to "free the world from the prejudiced fixation with leprosy's old history". The patient movement emphasized, on posters and flyers that it was possible to cure leprosy and that it no longer posed a societal danger. At the same time , many patients complained that they were subjected to people's prejudices . One of th e slogans that was advanced during internation al leprosy day in 1958 volumes: "Leprosy was cured but the lepers remained". Expressed an other way, one can say that the leprosy patients of today are stigmatized by being linked to the lepers of a distant historical past. This stigma tization and the idea of an unbroken historical tradition, has led leprosy patients in Greece to feel forced to protect their personal identities. At first, most of them were adamant about being anonymous in their meetings with me. Many chose, for example, not to reveal their names when I interviewed them. But the secre cy of name and identity was also a strategy to retain an interpretive advantage in conversa ti om; about th e i l l ne:;; s; that iR to say, a strategy to control the po:-;H i bi l ities of interpretation in a defi n ite direction. D i n a':; account:; of her own h i :;tory of illne:;:; in our fi rst conversation is an example of thi s. Actu ally, she waited fi:>r over four years , until the seventh period of' my fieldwork, to reveal to me th at her father had also suffered from lepro sy. Now, in hin dsigh t, it is impo:;siblc to miss the fact that she consci ously refrained from men tioni ng her father's illness, i n order to empha size causes other th an con tagion as to why she became sick herself. Instead, she steered my attention towards other th emes whenever she got onto the subject ofher own contraction of the illness. She compared her contraction of the illness to the suflering that people experienced during the 1946-49 civil war in Greece. She gave no explanation as to why she, in particu lar, contracted leprosy. She claimed, like most of the other patients, and in contradi ction to med ical science, that leprosy is an inherited afllic tion. Her explanation was that all people bear all sorts ofbacteria, and that leprosy only breaks out in those who are genetically predisposed to the illness. A reasonable assumption, on her part, was that keeping her father's illness a secret was a prerequisite for my accepting her views on the spreading of leprosy. If, on the other hand, she had begun her story with re counting her father's illness, then she would have immediately created the opportunity for me to interpret her contraction of the illness as being a result of contagion within her own family.
The second time I heard Dina use the prov erb was in a conversation regarding the difficul ties doctors have in diagnosing leprosy. She gave a self-conscious account of the typical symptoms of leprosy and by using the proverb she emphasized her ability to diagnose the illness.
Dina: (in a low voice) "These are the symptoms of the illness [hmm] . And the sufferer is doctor (o pathos ine jatros). By having followed all of this, ifl see someone out in public [she recogniz es]3 I can recognize it. Yesterday, I went to the marketplace, in order to, to the local market place just above here, and I was walking when I saw Romeonc who, one co u l d say, had devel oped th e illness.
But I don't dare say anything to h i m :;ince I don't kn ow how h e w i l l take i t . l i,But you I I can recogni ze it now. I am not a docto r or sci entific, but since I have been living with the illness and sec the symptom s, sec the types, see different in dications. No matter whom I see outside (lowers voice) 1 am able to recognize it.
(whispers ) He has this illness. (rai ses voice) It could be th at he would not believe me ifl tell him. But I don't come to an end to recogn i ze it.
Since-some have a benign kind and what they have is insignificant. (whispers) I recog n ize it." Dina framed the proverb with a story ofhow she had noticed that a man, who was visiting the local fruit and vegetable market suffered from leprosy. She had never met him before, but still spotted his condition. She emphasized that her ability to identify the outer symptoms of the illness was based on her many years of experi ence living with the illness. When she used the proverb as support, she converted her stigma tized body into a source of knowledge .
The third time I heard her use the proverb, she embedded it in a story in which she empha sized that leprosy patients are actually better equipped than doctors to evaluate symp toms of the illness and to prescribe medicine. This time the proverb was triggered by my expressing satisfaction with our conversation, which was winding up.
Dina: "Look, we are alive. The sufferer is doctor (0 pathos ine jatros). When they go up to a patient and say "Say there, how did you cure your stomach?" Or "how did she get over her influenza? What can I do to get better?" [yes] That is the meaning ofthe suffering doctor (o pathosjatros) [yes] . When we arrived here and asked Joannis Markianos, professor and lepro logist. He was the only leprologist in all of the Balkans . Now they are all skin specialists [yes] .
Oh, he said to us ''You should do this, you should do that!" "Mr. Professor, what more do we need to do for this and that?" "Continue upstairs! You should go to the infirmaries, or to your rooms, you w i l l find nwny doctor::; there !" H e was referring to l i.D id he Ray so l our fe l l ow patient::; lyes l . "You will be able to find many doctor::; w ho can give you advice." l h m m l He was referri ng to those who were suflerin g [yes] . Since it is patients who arc sti ll living and know how th ey remedied th ings yesterday l m m l they can also advi se you lycs l .
The proles::;or gave them an exam ple: "He should take three tablets a day" lycs l . We who were there : "One sho uldn't take three tablet::;. Don't let it m ake you bedridden at once, since the medicine is strong" lycs l . "Take one tabl et this week l mm l . The second week you can take two [mm l and after another month, then three." Since a sudden treatment is strong and on top of all the other problems one does not eat well, one does not sleep well [mm] . "Don't let it make you feel bad lmmJ and make you sick and bedridden . Then you can't be treated at all" lmm mmJ . You understand, it is systematic to just take a little, a little (bit of medicine) at a time [yes] . We gave that (advice) at once [yes] ((inaudible)) can't take the medi cine like that lmm 1. We understand the (illness) in reality f mm] (whispers) Do you understand now? " As used by Dina the proverb becomes an effec tive linguistic tool to convert personal experi ences into a collective, comprehensive body of knowledge. From that perspective, she was not just using the proverb in order to lend weight to her knowledge ofleprosy, but also to control the discourse on knowledge according to how lepro sy patients are categorized and evaluated in the outside world. Dina's usage of the proverb, especially in the first instance, when she clearly contextualized it in relationship to the new discourse about leprosy, meant that she maxi mized the intertextual gap to the older dis course regarding leprosy. At the same time, she sided with her fellow patients' way of talking about the realities of their own illness.
In conclusion, let me say a few words about my own thoughts on intertextuality. It is my contention that the strategic intertextual con structs of the leprosy patients, show how they act as subjects in relation to how they are made ::;ubjcct::; in th e outside world. It is also my conten ti on th at a focus on in tcrtcxtu al ity sh ed::; light on th e relationship between genre and d i::;cur::;ivc contexts . From one pcr::;pcctivc , the an alysis in this case can give insight into how leprosy patients create intertextual connections and relationships, in the context of genre con ventions. From another perspective, the an aly si::; can be focused on how they relate to di::; courses on leprosy, that is, to how knowledge of leprosy is controlled. The analytical quc::;tion, i n th at case is: what consti tutes the con text of meaning that their intertextual constructs arc a part of? I call this context of meaning the intertextual environment. I suspect, taking in spiration from Foucault's thinking, that this intertextual environment is created from a hi erarchy of subject positions, where every sub ject has at its disposal, a convention regarding the way to talk about leprosy. This intertextual environment offers a limited number of possi bilities, by which the leprosy patients are cate gori zed and evaluated by the outsideworl d.
To summarize, I have presented an analysis of how a Greek woman, who suffers from leprosy, uses a proverb as an element in an expressive strategy to control the representation of histo ry. I have discussed this strategy in terms of intertextuality in relation to genre and discur sive contexts. If intertextuality is viewed from these perspectives, then the intertextual strat egies of the leprosy patients -as a form of subjectivation -can be linked both to a dis course analysis and to a textual analysis. One point that I want to make, is that on the one hand the interpretation and textualization of leprosy sufferers' history generates a subject for a certain form of knowledge. But at the same time, the strategic position of the leprosy pa tients' toward history can result in their chang ing this subject and converting history into a social force . Notes 1 . 'l'h iH a rticle is based on a paper prese n t ed i n a panel en tilled "Express ive s t rategies and th e con t ro l o f h i Ht o ry: con t e m porn ry l u ropea n and N ort h American cases" a t. the A n n u a l M eet. i nJ..: of the American Fo l k lore Societ y in Austi n , Texas on Oclobcr :J J , 1 997. I a m �-:ralcfu l lo Bn rbro Klein a n d Lol ten G usla fHson fiu· com men t s on t h i s pa per.
2. l have had severa l exa n1ples in fiu·nll. l ia t i ng the slru clu re o f the eth nopoctic tra nscri ption of the ( ( i n double parenthesis)).
3. Inflected acknowledgment, made by a woman in the hall.