DE PROFUNDIS-:UNMAS-~ING THE CLINICAL PATHOLOGICAL AND S-OCIOCULTURAL AS-PEGS- OF

"Collective representations are the stigma associated with leprosy is an the result of an immense co- apparently moral and social consequence operation which stretches out not is understandable: society feels a need to only in space but into time as protect itself against aberrant and well." misunderstood concepts--if it does not, anomie ensues. Does this reality arise from the physical horrors of the disease or does it come from the socio-cultural contexts in which the disease exists? Are these socio-cultural ideologies universal? For centuries the concept of Is the leprosy stigma connected to disease has been fettered with particular historical and social conditions ecclesiastical overtones synonymous specific to each society? In this essay I with immorality, sin, and excess. From will explore these issues and seek to find Biblical times to the present, one of the the cause and effect of leprosy, both most misunderstood and widely pathologically and socially. More stigmatized diseases is leprosy, also specifically, I will delineate the key known as Hansen's disease. During the aspects of leprosy, including the medieval age, leprosy, with its terrible epidemiological and pathological physical deformations, was seen as characteristics of the disease; the social divine punishment for committing and moral consequences faced by the cardinal sin. One was thought to contract affiicted and the community; and lastly the disease by not washing, or the cause and perpetuation of social and maintaining proper hygiene, thus it was moral marginalization of the affiicted. associated with the poor and destitute. The unfortunate stigma attached to leprosy has been perpetuated since time LEPROSY: AN EPIDEMIOLOGICAL AND immemorial through many mediums, PATHOLOGICAL PERS"PEGI\JE: particularly those of literature, art, folklore, and mythology. Owing to these It was not until 1873 that the disparate agents, leprosy today carries believed cause of leprosy-- the same stigmatizing connotation as it , a schizomycete did centuries ago. Although the disease of the order Actinomycetales, from the can be grossly disfiguring, it also carries family Mycobacteriacae--was discovered with it an equally burdensome social by Norwegian physician Gerhard stigma: the stigma of turning the affiicted Armauer Hansen (Carpenter and Miller into moral and social outcasts who, upon 1964:15). Although a direct causal manifestation of the disease, are relationship between the bacterium (M immediately shunned from society. That leprae) and leprosy itself has not yet been found, the bacterium is assumed to Health Organization, are as follows: In play an important role in precipitating the Northern Asia, although endemicity of disease. Until Hansen's discovery, the leprosy is quite low in areas such as cause and spread of leprosy was thought Russia, China (especially in the western to be a corollary of poor hygiene, causing provinces) has a caseload of over widespread misconceptions regarding its 100,000 patients and the number is pathogenesis and transmission. rising. South and Central America's According to the World Health leprosy status is endemic at a low level Organization, the geographical of prevalence but has had, in the past, distribution of leprosy is quite large numbers of cases when the disease cosmopolitan. They state that of the 10 was brought into the region by the to 12 million patients suffering from French, Spanish, and Portuguese at the leprosy at present most of the beginning of the 16th century. In the concentration is located in developing Pacific Islands, the prevalence of leprosy countries in the tropical and sub-tropical is still endemic and has led to outbreaks belt. Although the disease was endemic known to last ten years or more. In nearly one thousand years ago as far Australia, leprosy still persists among the north as the Arctic Circle--especially in aborigines of the Northern Territory. regions such as Scandinavia--it is now During the 18th and 19th centuries, .considered completely extinct in the leprosy was· introduced into the United region. This extinction is considered one States and Eastern Canada by Chinese, of the great epidemiological paradoxes of French, German, and Norwegian any disease's history. The World Health immigrants. Leprosy persisted· in these Organization offers some possible factors areas in several clearly-defined foci for contributing to this fortunate outcome: it several decades--especially in Hawaii is thought that improved socio-economic during the outbreak of the 1850's--then conditions provided for improved declined rapidly, although some cases are nutrition and higher living standards; known to be in existence (W.H.O. genetic isolation of the population owing 1988:5). According to Waxler (1998) to their northerly geographical position; "an average of 100 new cases of and lastly, the selective mortality of leprosy ...[were]. ..reported each year in leprosy patients during plague epidemics the United States during the twenty-year (W.H.O. 1988:5). Although selective period following World War II ...". mortality of leprosy patients may be seen Prevalence of leprosy is extremely high as an inhumane means of dealing with in areas such as India, Sri Lanka, and the disease, it is a method used to clear a regions in Africa such as Nigeria, population of its infected--to eliminate Tanzania, and Ethiopia. transmissions entirely and leading to Transmission of leprosy is complete control and suppression of the usually spread through human-to-human spread of the disease. The concomitant contact. Although the most generally factors associated with this method, as accepted reservoir of leprosy is thought simple as they seem, conspire to make to be human, the nine-banded armadillo the sick only sicker--eventually fatally-- and Mangabey monkey have been said to so the healthy can remain healthy and provide possible zoonotic transmission stable. due to the detection of large bacillary The current standings on leprosy loads found within both animals. It has distribution, according to the World also been found that M leprae can produce a mycobacterial infection in Upon contamination with the mice foot-pads (Carpenter and Miller bacterium, the first indications are said to 1964:23). Arnold and Fasal (1973) be neurological: the patient experiences suggest that there may be vectors patches of numbness or anesthesia responsible for the transmission of throughout the body. The early physical leprosy: mainly bedbugs, mosquitos, indications of the disease manifest fleas, and possibly cockroaches, although themselves as simple or vague alterations there is no direct causal link between in the skin, usually in the form of cause (an effective bite from one of the hypopigmented patches or macules aforementioned insects) and effect (a (Brody 1974:25). The patient may also diagnosable case of leprosy in any of its experience slight paralysis or atrophy of forms). Contrary to myths and legends muscles in the hands, feet, and face. regarding leprosy, it is not as highly Owing to the disparity and variability of contagious as it has been thought. In these symptoms, prognosis is quite actuality, approximately 95 percent of difficult to infer, thus this stage of those persons exposed to the bacterium leprosy is often termed indeterminate are immune, a concept contrary to public (Brody 1974:26). This indeterminate opinion. Therefore the disease is now group is usually stable and is rarely considered to be 'very mildly contagious' bacteriologically positive, though the (Grolier 1992). Leprosy's main route of form may progress into either transmission is thought to be through tuberculoid or lepromatous leprosy, or nasal emissions and skin-to-skin contact. may even remain unchanged indefinitely Although the specific process of how the (Arnold and FasaI1973:19). bacillus enters the skin still remains The specific advanced state unknown, it is thought that one must leprosy may evolve into depends upon have a pre-existing lesion in which the the degree in which somatic tissues are bacilli can enter and multiply. Bryceson able to set up an adequate defence and Pfaltzgraff (1979) also suggest that against the bacilli. If the somatic tissue tattooing, and intradermal injections may response provides an effective barrier also create possible portals of entry for against the bacilli, the condition is the transmission of M leprae. The ideal termed tuberculoid leprosy. Although a growth temperature for leprosy is usually benign form, tuberculoid leprosy is still between 30 and 36 degrees celsius, thus capable of bodily disfigurement. its preference for the cooler sites of the Bryceson and Pfaltzgraff (1979) state human body such as the extremities and that tuberculoid leprosy is associated regions away from sweat glands (Ridley with erythematous skin lesions which are 1988:45). In terms of dissemination of usually elevated marginally or more M leprae through nasal emissions, it is extensively. There are also groups of transmitted as an aerosol, a means of epithelioid cells which are surrounded by transmission strikingly similar to that of lymphocytes present at the site. This tuberculosis. As a result of the arrangement is termed a tubercle. In the bacterium's slow development, the skin, cellular infiltration may even incubation period can range from as little extend up to the epidermis and involve as one year to an upwards of thirty years. the basal layer. The cutaneous nerve The pathological manifestations of bundles, both sensory and autonomic, are leprosy usually appear in the peripheral then destroyed by cellular infiltrate, and nerves, skin, and mucous membranes. as a result, larger nerves bundles usually become swollen, compressing and Pfaltzgraff 1979:7). In a typical case of ultimately damaging Schwann cells lepromatous leprosy, the (Bryceson and Pfaltzgraff 1979:5). histopathological process starts with When the Schwann cells are destroyed fluid, consisting mostly of macrophages, the myelin sheath degenerates and is thus leaking from the perineurium into the incapable of axon regeneration. Loss of nerve itself. The Schwann cells motor function and sensation are usually reduplicate in an attempt to repair and a result (Benjamin et al. 1997:363). reconstruct the damaged axon. The In a patient where cell mediated damage occurs at a more accelerated rate immunity fails to eradicate the rapidly in non-myelinated fibres due to the lack invading M leprae, the form of leprosy of insulation that the myelin sheath is termed lepromatous, a malignant and provides. In myelinated neurons, the progressive form (Bryceson and damage progresses much more slowly: it Pfaltzgraff 1979:6). The two forms of begins with axonal degeneration which is reaction in lepromatous leprosy are then followed, sometimes many years termed erythema nodosum, and later, by hyaline degeneration and progressive lepra reaction. In terms of fibrosis of affected nerves (Bryceson and gross pathology, the lesions of erythema Pfaltzgraff 1979:7). Finally, the nodosum manifest themselves as Schwann cells rupture due to the rapid elevated and inflamed 'rose spot' nodules. rate of multiplying bacilli. Brody (1974) They may also appear as dark-red or adds that upon rupture of Schwann cells copper coloured macules with there is tremendous swelling and complications such as ischemic necrosis degeneration of nerves. In areas and eschar formation, conditions which involving tendons and joints (primarily cause the skin to appear almost fingers and toes), dislocation, rigidity, putrefactive and cancerous. The lesions paralysis, and ultimately resorption of of progressive lepra reaction, are affected bone are usual pathological characterized by small pyogenic nodules responses to the disease. In cases of located subcutaneously (Bryceson and severe anesthesia, as a result of axonal Pfaltzgraff 1979:7). These lesions are destruction, the patient's ability to sense usually in the form of large crater-like or feel pain disappears completely, nodules located on the extremities of the rendering the patient unable to detect any patient. Progressive lepra seems to be form of bodily trauma. If the trauma more severe than does erythema were to remain unnoticed by the patient, nodosum as the complications associated Depending on the severity of the with it are not only deforming but in the injurious insult, infection would ensue long-run, deadly. Secondary pathologic and--if medical attention was not sought- complications are quite diverse and range -would result in dermal, muscle, tendon, from ophthalmic diseases to tuberculosis. and bone marrow inflammation. The end The histopathology of result is often complete loss of the lepromatous leprosy--concerning both affected area, which is usually confined erythema nodosum and progressive to the digits of the hands and feet. lepra--is characterized by large numbers The disease is usually not of the bacterium M leprae present in localized and spreads very rapidly Schwann cells of cutaneous nerve fibres throughout the body via the circulatory within perineurial, cells and in vascular and lymphatic systems. Affected areas endothelial cells (Bryceson and tend to be the skin, nerves, mucosa of the upper respiratory tract, eyes, testes, 'flat-nose' deformation associated with lymph nodes, the marrow of the many victims of leprosy (Job 1994:211). phalanges and most organs of the body Edema of facial tissues accompanied by (Bryceson & Pfaltzgraf 1979:7). chronic inflammation causes erosion and In the occurrence of the third necrosis of nasal bone and cartilage. form of leprosy, dimorphous, the patient Brody describes: usually exhibits a combination of both tuberculoid and lepromatous leprosy. "In advanced cases, extensive The two categories of dimorphous nasal involvement presents a leprosy are macular and infiltrated. Both tragic picture, with a foul- characterize a generalized distribution of smelling discharge giving rise to lesions throughout the body and mayor a heavy and musty odour, and may not precipitate anesthesia and with distressing symptoms of ultimate loss of localized function nose blockage due to extensive (Brody 1974:28). edema of the mucosa, ulceration, Whether it be tuberculoid, and septic complications with lepromatous, or dimorphous leprosy, the marked crust formations." physical deformity produced by this disease is the catalyst precipitating wide- spread stigma and fear. With the exception of minor pathological Lesions and deformations alterations associated with tuberculoid associated with the mouth are quite and dimorphous leprosy, it is the severe and are capable of hideous results. advanced stages of lepromatous leprosy The lips and gums usually swell quite which cause the most hideous and considerably, sometimes to twice their deforming changes in the body and face. size; gingivitis is usually a secondary Lesions of the face are usually in the reaction leading to bleeding and form of erythemous and edematous boils. ulcerating gums. The tongue is also Cytopathologically, macrophages packed affected and may develop large nodules with M leprae infiltrate and destroy the or ulcerating lesions sometimes bony and cartilagneous structures of the producing large fissures on the surface of nose along with mucous glands. The the tongue. The hard and soft palate are ultimate collapse of the nose, as seen in also involved along with the uvula, many patients with advanced cases of displaying considerable degrees of lepromatous leprosy, is facilitated by a deformity and destruction depending on secondary infection by a pyogenic the advancement of the bacterium. infection, which eventually leads to Adding to this gruesome illustration, destruction and loss of architecture in the Brody (1974) describes that not only is septal cartilage. In some cases this the architecture of the face and body complication leads to exposure necrosis deformed drastically, but the voice is of the nasal region. Upon advancement also affected. As the bacilli invade the of pyogenic infection, resolution of the larynx, the vocal cords become inflammation--the body's attempt at paralyzed. If the case is progressive and correcting the pathological situation-- ulcerative, secretions invade the pharynx results in fibrosis, a reaction which leads and larynx, producing not only to contraction of the nose further in hoarseness of speech and dyspnea, but towards the face, resulting in the typical also creating a possible means of individual would be a threat to suffocation. the unity of the social body..." In all of its bacterial magnitude, it is probably the extremely slow progression of M leprae it one of the most successful parasites. Perhaps the Adhering loosely then, to most horrible quality of leprosy is that it Durkheim's theory, it would appear that a gives its host a slow and silent death, society views the social 'other', (those disfiguring him/her centimetre by displaying different physical centimetre, until hel she becomes but a characteristics, interests, beliefs, or any ghastly symbol of living death. other form of behaviour which sets them apart from the common social matrix in which they are part) with apprehension THE CAUS"ES"MD MECHMIS"MS" OF THE and as a threat to their existing solidarity. MORAL AND S"OCIIiL DEFINITION OF This reality presents itself in myriad LEPROSY ways in societies across the globe and it has been thus since time immemorial. It was Emile Durkheim, the Whether the scenario be Nazism in pre French sociologist, who stated in his World War II Germany, in North landmark paper, Division oj labour, America during the 1950's and 60's, or crime and punishment, that social the contemporary, ever-growing stigma solidarity in its simplest form is based on of AIDS patients globally, the fear and people with like interests, appearances, ignorance of the 'other' is still present and motives; hence his definition of the with as much force as ever. social concept, mechanical solidarity. It was in ca.1749 that the Although the term mechanical solidarity Norwegian leper, Peder Feidie, wrote on was intended to be definitive of a small, the social misery and physical pangs of 'primitive' society, the term is still leprosy: expressive of the way in which medieval peoples organized themselves: communal units based on the family, "We lepers here can no doctors get: controlled by the doctrine of the Bible Here must we stay and wait and fret and priest, to which every man, woman Until our time is up... and child was subject. Durkheim Because on God's grace...[we]...did succinctly explains the concept of wait; mechanical solidarity: o God, break now the chains Which bind our limbs with pains." "Thus they [people] are solidly joined together...[because of this]...results a solidarity sui generis which, deriving from Pathologically and socially, shared characteristics, directly leprosy is a very unique disease links the individual to society. deserving special attention. As a result ...[This state of affairs requires] of its physically deforming attributes, it from each of us a minimum of can be the ultimate social curse one can similarities, without which the receive in any society. By force of appearance alone leprosy sets the afflicted aside from the collective our faces, (in North American society) without sympathy or consideration. are perhaps the most important means When anyone defies the social order by upon which human communication is contracting a deforming disease he or she based. Thus, when our faces betray us in transgresses the culturally constructed disfigurement our entire essence seems ideologies of public image and endangers threatened, and anyone unfortunate society simply with their presence. enough to contract a disease such as Because this disease transforms the leprosy is retaliated against by a fearful 'natural' state of one's physical self, the society that attempts to adjust to the afflicted are seen almost as deranged situation accordingly. It feels the need to monsters. It is this primary fear of protect itself from contagious 'deviants' turning into a 'hideous monster' coupled who pose a threat to the community in with the fact that the disease is some way or another. The impetuses communicable that transforms leprosy responsible for these moral ideologies into a distinct social classification. The sometimes have historical consequences. most common and basic characteristic a That leprosy was seen, as in medieval society shares amongst its organizational times, to be the personification of dirt, qualifications is a semblance of filth, uncleanliness and poverty, is the appearance, or some form of physical result of historical forces having their homogeneity to which all can relate. roots in Biblical law. When anyone opposes this socially It is in Levitical law that concepts intrinsic law, he or she is placed in of purification and cleanliness as they somewhat of a liminal category. The pertained to medieval society were afflicted become social spectres stripped propounded. To medieval man/woman, of all their social attributes. They are, in leprosy was a dreadful taint; it was the essence, marginalized to the edges of epitome of all that was unclean and society. These deep psycho-social undesirable and a horrible means to an complications upon which each society's end through complete segregation from mental organization is based provide for society. It is in Leviticus 13: 44-46 that the feelings of aversion and tension the best description of the concerning anyone 'abnormal' or metamorphoses of the leper from a physically deformed. This is sometimes normal citizen to a social pariah is found. evident in instances where children first encounter someone who is physically ''Now whosoever shall be defiled 'different.' At first children may seem with the leprosy, and is separated mesmerized and stare--not out of by the judgement of the priest, ignorance but out of sheer bewilderment shall have his clothes hanging at what they are observing. It is only by loose, his head bare, his mouth following their mother's or father's covered with a cloth, and he shall reprimand that the child's curious gaze is cry out that he is defiled and broken. Ostensibly, we, as a North unclean. All the time that he is a American society, place extraordinary leper and unclean, he shall emphasis on physical appearance, a dwell alone without the camp." concept that is burgeoning and extremely prevalent in fashion magazines, television shows, and mass advertizing campaigns. Our appearances, especially The aforementioned passage clearly other place where he could endanger the denotes the austere social and moral rest of the faithful community (Brody consequences of leprosy as seen in 1974:66-67). Although purely Biblical and medieval times. As leprosy hypothetical, I think it would suffice to was seen to be some sort of sign from add parenthetically to the concept on God, it was usually assumed that ritual that, according to Durkheim's whoever received this sign was morally functionalist notions on mechanical corrupt and in dire need of salvation. solidarity, that the ceremony used to Whether that salvation was death or banish the leper acted first as a means to banishment was left for society to decide. protect the community from the leper; Under the hegemony of the church, it and second, to maintain group solidarity was customary to banish any potential by means of latent levels in ritual threat to society, thus lepers were either function. According to Durkheim burned alive or in some cases banished to (1893), the latent functionalist use of leper colonies to exist in a social ritual was used to sustain social purgatory. solidarity, especially in times of social The ritual based on Levitical law anomie. In turn, the ritual of banishment used in the banishment of medieval would not only rid society of the threat lepers consisted of allegorical acts but also draw the community closer symbolizing the lepers' death and rebirth, together, strengthening ties between relegating him/her to eternal life far away people; however, historical catalysts in from society. The priest--the connection the form of religious doctrine are not the between the leper and God--was given only means of generating stigma. As the right of examination of all lepers in would appear likely, the methods of his community. This was a problematic generating social and moral stigmas are and thoroughly biased procedure as, culture-specific. irrespective of the actual diagnosis of Although medieval European leprosy, if the patient examined exhibited treatment of leprosy was prejudiced and any signs of skin blemishes, he was harsh, the causal factor involved in its immediately deemed a leper. Although perpetuation was primarily religious the ritual of banishment differed from ideology based on Biblical law. The region to region within the Christian picture of cause and effect regarding world, it retained the same characteristics in different regions of the in whichever medieval European country world is often quite different. For it was practiced. The ritual itself usually example, contemporary India's treatment involved the leper, the community, the of lepers bears striking resemblance to priest and the rest of the ecclesiastical the medieval European method of body. The procedure consisted of the treatment both in theory and practice. As symbolic pouring of dirt (obtained from a in medieval Europe, India's system church cemetery) onto the leper's head or is based on hierarchy: If one contracts any other part of his/her body as he/she leprosy, regardless of social position, the knelt, adorned in a black veil and robe, at unfortunate immediately drop to the the altar. This act was symbolic of the status of pariah. The treatment of lepers leper's death and ultimate departure from adheres closely to the format of medieval society. Upon completion of the banishment: whether by personal ceremony, the leper was prohibited from prerogative or blatant rejection from attending the church, market, or any society, the leper is left with no choice but to either admit him/herself to a leper the impetus responsible for the spread hospital or manage life as a beggar on the and perpetuation of racism of African- street. According to Waxler, the primary Americans amongst minorities. catalyst invoking a sense of fear in The Hawaiian epidemic of the Indian society is the fear of contagion. 1850s and 1860's produced some She describes contemporary accounts in differing moral and social results when India of people wearing handkerchiefs in compared with those of medieval Europe front of their faces in order to protect and India. At the time, native Hawaiians themselves from contagion when in the and white Americans alike believed that presence of a leper (Waxler 1998:150). leprosy was a hereditary disease confined Before 1950, India passed laws similar to to the household and family, free of any those of the Levitical law declaring that religious association. Contrary to all lepers, regardless of level of historical or religious ideologies infectiousness, be segregated, adding to responsible for the stigma of leprosy, the the perpetuation of the leprosy stigma. Hawaiian epidemic and its subsequent Lepers were not allowed to inherit land, social backlash was based on socio- serve in the military, or to travel using cultural, racial, and economic ideologies normal modes of public transportation. thought to be catalyzed by the Lepers in India were more easily rejected immigration of Chinese wage labourers. due to its caste system: justified by the During the height of Western ideology of impurity and sin, those of the imperialism, Hawaii experienced an upper classes were able to equate leprosy economic boom which later brought in with the same notion of uncleanliness an influx of cheap Chinese wage and sin as was seen in medieval Europe labourers to man the thriving plantations (Waxler 1998:151). This reality is very (Gussow 1989: 111). During the 1850's, similar to that faced by Mrican- Hawaiian authorities noticed a drastic Americans in the United States during increase in leprosy. By the early 1860's the 1950's and 1960's. The spread and there was a major outbreak of the disease perpetuation of almost any form of (Waxler 1998:151). Due to the influx of seems to have inherent psycho- Chinese wage labourers and the social connections. It appears when subsequent outbreak of leprosy, native someone is not like the collective whole, Hawaiians and white Americans could they possess an aura of danger somehow no longer put faith in the notion that threatening the social whole with their leprosy was a hereditary condition (as it presence alone. In defence, the society had been viewed previously). Belief in retaliates and does what it thinks is right- contagion became chief concern. -it has the potential threat removed. The The marginalization of the prejudice against the Mrican-American Chinese was brought on by the fear of of the 1950's and 1960's seems to be, for economic dominance coupled with' the the most part, based on the lingering doctrines of 19th century biological concepts of 19th century biological determinism. These concepts acted as a determinism and the paradigm of safety net to cushion the Americans from unilinear evolution conceived by the the threat of economic takeover by the anthropologist Lewis Henry Morgan. Chinese. According to the Americans Although now seen as a naturalistic the threats were evident: the Chinese fallacy, the concept of biological were abundant in number, hard-working, determinism and racial hierarchies was industrious, and cheap to employ; this spelled social anomie to Americans moral definition arose out of northern searching for a living during times of Tanzania. This is an instance of leprosy economic boom. Incidentally, American inadvertently attaining a stigmatizing researchers found that the Chinese may moral definition by means of Western not have been responsible for the medical intervention from the west. transmission of leprosy to the native Before the advent of Western medical Hawaiians and Americans. The Chinese, intervention in Tanzania, leprosy irrespective of whether they were totally received little stigma: lepers were responsible for the leprosy outbreak, assimilated in society as though they had came to bear the full brunt of Hawaiian not contracted the disease. Owing to and American accusation. In essence, vastly different religious, social, moral, they became the ultimate scapegoats for and cultural systems, Tanzanian society the American's social and economic viewed leprosy with little fear and insecurities. It seems that the physical rejection. It was not until the manifestation of leprosy itself was only a introduction of the Geita Leprosy subtle variable in the interplay between Scheme in 1966that the social climate of social, cultural, and economic ideologies acceptance changed drastically. The task involved. The cause for the of the Scheme, according to Waxler marginalization of the Chinese was two- (1998), was to focus not only on cases of fold: first, it gave the Americans the right leprosy and their treatment, but also on to isolate and relegate the looming public education--aimed primarily at economic threat--the Chinese, and, young school children from grades five second, it strengthened the racial through seven. A research survey ideologies of the time period, giving completed in 1971 showed that the white Americans confirmation of the previous view of leprosy as a product of racial inferiority of the Chinese. The role heredity or witchcraft had given way to of leprosy in this complex chain of the Western mode of thought: that events acted as a double-edged sword: leprosy was caused by certain bacteria First, stigmatizing both the Chinese for and that transmission was achieved supposedly bringing leprosy to Hawaii, through bodily contact. Contrary to what and second, the disease itself became Western medical practitioners had been stigmatized because it was highly advising--that there was no need to prevalent among the Chinese (Waxler isolate patients from society given that 1998:152). certain modes of hygiene were carried The events of the Hawaiian out--the children acquired newly learned leprosy outbreak in the latter half of the entirely different notions regarding the 19th century carried a different sense of treatment and status of lepers. Waxler stigma compared to the historical and (1998) states that the children were religious connotations common to diametrically opposed to the Western leprosy in medieval Europe or view of the assimilation of lepers. They contemporary India. In the Hawaiian believed that all leprosy patients should example it was the economic and social be segregated, not being able to insecurities of the Americans that intersperse, at any level, with non- provided a milieu for the creation of a infected patients. moral definition of leprosy. In this instance, the previously Perhaps one of the more unique held view of leprosy--that lepers be aspects of leprosy in attaining a specific integrated and not separated from society--was transformed directly and With the advent of modem drastically by Western scientific medical technology, the progress and intervention. The previous notion had development of the health industry has been altered inadvertently from a state of wrought remarkable solutions to age-old tolerance to medical quandaries. Although there is a state of stigmatization by means of a still no known cure for leprosy, an change in public attitude. This case effective treatment, a sulphone, namely displays how circumstances completely DDS (Dapsone) was found in 1908 by unrelated to religious, historical, or Fromm and Whittman of Freidburg economic factors can influence the moral University (Yawalkar 1968:80). Other definition of a disease. In the drugs such as rifampine, clofasimine, and aforementioned cases of leprosy in thalidomide are other drugs used to treat medieval Europe, India, and Hawaii, the dapsone-resistant cases (Gorlier 1992). moral definition and social stigma of the Perhaps one of the most pertinent disease were inextricably linked with questions regarding the spread and steadfast ideologies built primarily on perpetuation of the moral definition and historical, religious, and/or economic social stigma of leprosy is, why do scaffolding. Western medical people vehemently fear the disease? One intervention in Northern Tanzania would think with scientific advancement illustrates the fact that the social climate and the introduction of a viable can be changed indirectly, even through treatment, the fear and stigma of the benign forces: The status quo in this case disease would subside. Unfortunately, was modified negatively by means of this reality has not yet· been attained. education. Instead of succeeding through Paradoxically, of the causal factors education and focusing on a cure for contributing to the perpetuation of the leprosy, Western medical practitioners moral definition and social stigma of instilled a new climate of fear in the leprosy, the most dominant contribution school children they were trying to reach. has been the leprosy organization, or the Where lepers were once accepted in the leprosarium. The leprosy organization society, they are now seen--by the school takes in lepers the society in question children--as a potential threat of does not want. As a means of providing contagion. It seems leprosy sits atop a care for them. As Waxler describes, precarious social perch tottering back and these leprosy organizations are forth through the winds of social, sometimes autonomous social units unto historical, economic, and religious themselves, completely segregated from influence. For the most part, depending the uninfected, normal society: on what social, historical, economic, and religious circumstances are influencing a "Inpatient facilities are particular society, the perception of often completely constrained leprosy is a provisional concept, subject villages providing not only to change with the vicissitudes of the treatment, but also employment, social climate. education, and recreation. There is often no need for a leprosy patient to leave this "asylum" PERPETUATION OF THE MORAL and, in fact, it is sometimes DEFINITION: THE PARADOX OF physically difficult to do so INPATIENT LEPROSY ORGANIZATION) because leprosy hospitals are often found on islands...er in the attained, then social restoration of the remote countryside. " patient can be completely invalidated. Bryceson and Pfaltzgraff (1979) also add that the concept of early treatment rapidly reduces the level of infectivity so Unfortunately, this scenario is what that transmission dissipates and ceases perpetuates the stigmatization of leprosy. after a few months. If this is done, the As it would seem, emphasis is placed on home unit acts as a barrier providing treatment and rehabilitation, rather than what Bryceson and Pflatzgraff (1979) on education regarding prevention and call a "chemical isolation". Adhering to reduction of stigma (Waxler 1998:155). these suggested steps greatly reduces In order to obtain funding, patient estrangement and allows the leprosariums must implement a tactic infected to carry on with social directed toward charities emphasising the relationships uninterrupted. Regardless threatening, disfiguring characteristics of of the artillery of chemicals used in the leprosy. This invokes a certain sympathy fight against leprosy, a true and effective which may appear to have its benefits: beginning should start with widespread Philanthropists the world over, affected education and understanding. Although by the silent pleas of lepers seem to this concept appears to be an ivory tower contribute extensive amounts of financial considering the seemingly inexorable backing. The more leper hospitals state of affairs regarding cultural, social, receive funding, the longer they will religious, economic, and historical exist, inadvertently perpetuating the constructs, this type of design is possible stigma. with planning, effort, and perseverance. I think the current means of dealing with a disease such as leprosy is both problematic and backward. INfERENCE: DI5CL051NG THE Segregation of any group within society MI5UNDERSTOOD CHIMERA not only insinuates to society that there is something wrong with the group being Within the dynamic interplay of segregated, but also signals to the group- social variables regarding leprosy, it has -especially when they are placed in been demonstrated that the disease, as separate areas--that there is something deforming as it may be, is only mildly wrong with themselves. To combat this communicable and really not a threat to disease effectively and thoroughly, any society as long as proper hygienic emphasis must be directed from inpatient precautions are followed. The salient care (treatment and rehabilitation), to factors contributing to the moral outpatient care. To attain a level in definition and social stigma of leprosy society where outpatient care is accepted, are deeply rooted in historical, religious, education must be foremost. When cultural, social, and economic systems society is educated about the inherent in society. In this essay, I have transmission of the disease dispelling all delineated the pertinent physical and myths of contagion, it can attempt to social issues of leprosy, ranging from the keep hospital treatment at a minimum. bacillus thought to cause leprosy, to Efficacy of treatment is based on keeping gross and micro-anatomic the patient at home with as little time (histo/cytopathological) complications. spent away as possible. If this is At the beginning of the essay, I generated specific questions such as: Is leprosy leprosy as a major physical and social universally stigmatized? What factors dilemma. If inpatient care can be allow for the creation of the leprosy transformed into an effective version of stigma? Do all cultures treat leprosy the outpatient care with the infected same way? The answers to these remaining at home, the disease can then questions remain varied and complex. I be viewed on an individualized basis, have pointed out that the social stigma rather than on a generalized, biased one. attached to leprosy arises from particular Giving leprosy an individual face, historical, religious, cultural, and social instead of viewing it as an anonymous issues peculiar to each society. This was scourge, should eventually dissolve the illustrated in examples from medieval cultural, social, religious, economic, and Europe, where particular historical and historic barriers time and society have religious factors--specifically Levitical constructed, providing non-infected law--played the major role in the moral patients with needed insight and definition and social stigmatization of the understanding into such a misunderstood disease. In India, particular cultural and disease. social factors helped define and maintain the moral definition and stigmatization of lepers. In Hawaii, it was the particular economic, political, and racial milieu which provoked the stigmatization of the Arnold, H.L. and Fasal, P. 1973. Chinese--whether they were responsible Leprosy: Diagnosis and for bringing leprosy to Hawaii or not. In Management. Springfield: Charles Tanzania, it was the implementation of C. Thomas an educational program designed to combat leprosy which inadvertently Benjamin, C.L., Garman, G.R. and perpetuated the stigma. By surveying Funston, J. H. 1997. Human Biology. these particular cases, I have been able to New York: McGraw-Hill discern that the moral definition and Companies, Inc. social stigma of leprosy is unique and particular to each society. I have also Brody, Nathaniel, Saul. 1974. The attempted to show why and how the Disease oj the Soul: Leprosy in moral definition and social stigma is Medieval Literature. Ithaca: Cornell perpetuated through the paradoxical University Press. concept of leprosy organizations. 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