My parent’s home in Bangalore is on a lane that ends in a Mosque. Its location gets us many interesting comments from friends, guests and from total strangers too. One such comment “I thought of stopping by yesterday, but forgot it was Friday, the lepers were sitting in front of your home.” A supposedly self-explanatory statement, a reference to the weekly gathering of the needy and afflicted to collect the alms, dispensed at the mosque after the prayers. They usually sat under the shade of trees eating their lunch, talking among themselves and dispersed after sometime. Their very presence stops some from even considering venturing into this street. Why? A primal fear, perhaps. A fear that a rational mind should be able to overcome, given the amount of information in the public sphere on leprosy, that 95 % of humans posses natural immunity to it and when treated with antibiotics the disease loses its contagious state within 90 days. We have known for some time now that leprosy is curable and it is far less contagious than many other diseases. Yet!
Senses and objects
As a child growing up in Bangalore city, leprosy afflicted persons registered in my mind as people who went about their daily lives by mostly using some kinds of objects to move around. A wooden board with wheels, a metal rod with a flat base, a wooden grip to move the wooden board or a wheel barrow pulled by a rope. These mobility-aiding tools appeared to be made of material forced into a design stemming from determination and grit. Wood against tar, metal against concrete, human will against odds, providing the necessary mobility the rest of us take for granted. These aids lacked any kind of uniformity, a sure sign that they were not manufactured but innovated and handmade by the ones who used them. Manufacturing would’ve meant that the need and demand for these objects was translated into a process of providing. It would mean the involvement of several sections of the society other than the users. That could have included me. Why was I not involved? How do my senses and fears exclude me from their lives? Fear of losing those very senses, perhaps! The image of an impaired human body is distressing and remains in the subconscious even when it is no longer in the vision. The possibility of losing the functionality of body parts, and worse, being disfigured are not easy mental obstacles to overcome.
A few facts about leprosy are highlighted below from fascinating papers that recount the history of the disease and the ongoing struggle humans have with managing their fears that have no rational basis. This should help us along a bit to see the disease for what it is and the silent havoc our senses play on the patients –forcing social exclusion as the only way of life for them.
It has been known since a long time that leprosy and the pathogen, Mycobacterium leprae have evolved in the old world. Historians of the disease have explored two prominent lines of evidence, that of an African or an Asian origin. Recent studies have added significant archeological evidence that show India is probably the place of origin. In this fascinating paper (linked below), the authors reporting on the skeletal remains of a male, excavated from a burial site in Balathal, in Rajasthan, along with interpretation of Vedic references to leprosy gives us several insights into many aspects of leprosy and practices associated with it in Ancient India.
As the Sanskrit word kushtha referred to a plant used to treat leprosy and tuberculosis (rajayaksma), the Atharva Veda is also the earliest text to infer a connection between the two conditions, at least in terms of treatment. It is not common to find adult burials after 2000 B.C. In contrast, infants and children under 5 years of age are common in peninsular sites. These features of second millennium burial practice are suggestive of Vedic tradition. Given this, it is interesting to note that it is customary in Vedic tradition in parts of India to bury lepers alive rather than cremate their bodies, which as diseased are not considered an appropriate sacrifice to Hindu Gods. The biological evidence presented here indicates that similar mortuary behavior for people with leprosy was present at a rural Chalcolithic village in northwest India by the beginning of the second millennium B.C.
This ancient disease has elicited the most severe forms of ostracizing in all parts of the world, however, in this paper the authors note that it was not universal and many kings, knights and crusaders who suffered leprosy carried on with their public lives.
Robert I, King of the Scots (1306-1329)
Baldwin IV, King of Jerusalem (1174-1182)
Henry VII of Sicily and Germany (1212-1242)
Afonso II, King of Portugal (1212-1223)
Henry IV of Bolingbroke, King of England (1399-1413)
Constance of Brittany, Duchess (1186-1196)
Leprosy had long been rampant in the Eastern Mediterranean lands and apparently reached Europe during the Roman campaigns of the first century A.D. During the Medieval period, leprosy sufferers were often ostracized from society and condemned to living in seclusion without recourse to social contact with the community. They were declared legally dead and their goods were confiscated. Their spouse was however expected to honor the sacramental bond and serve the leper until his/her death. Once identified as a leper, a “Mass of Separation” (13th century) was performed by the priest at the site of the leper’s hut.
India has a long history of individuals and organizations dedicated to healing of leprosy patients, but to a large extent, the patients have been subjected to exclusion. In the few cases that I’ve known personally there was no ‘Mass of Separation’ just a massive dose of shame and self-preservation of family members and efforts to find a quick means of dispatch to an institution. That brings us to the role of infirmaries and institutions; legacies of care and treatment in different cultures are varied and well documented in some parts of the world. One of the best known traditions of caring for leprosy patients is the Order of St Lazarus.
The care of the sick was during the Medieval Period viewed a Christian duty. This attitude encouraged the philanthropic establishment of infirmaries or centers to serve the sick and infirm of the society, including lepers. The Latin Kingdom and some European leprosaria were managed by a hospitaller chivalric Order dedicated to St. Lazarus set up in the Holy Land with the specific aim of caring for lepers. Various members of the European and Latin Kingdom Royalty acted as benefactors to the Order furnishing it with land and monetary donations to help it achieve its functions.
Legend of the Leper King
Closer home, in Cambodia there are various versions of the legend of the leper king, including one that draws from Indian literary narratives of Rama’s banishment associated with leprosy. I found this interpretation of the Khmer legend riveting
Cambodia’s leper king is also the king who rebuilt the kingdom better than ever before, Jayavarman VII’s epigraphic exegesis of the conjunction of physical health and social justice embodied by the king is given full form in the legend and its artistic representation at the Bayon. Suffering with the people’s suffering, the king in these scenes finds curative source for his own body, thereby implicitly curing the body politic.
The fact that royalty who suffered from leprosy have ruled their kingdoms dispels two powerful and persisting myths, a) that leprosy always meant exclusion irrespective of class or position, b) despite the debilitating nature of diseases several of these monarchs led very productive lives, some of their actions have positively changed the course of World history. And modern medicine has proved that this disease is far less contagious than many other diseases that we routinely live with, without resorting to exclusion of the afflicted of those diseases.
Exclusion of leprosy patients is therefore only to shield us from our fears. There is no justification for it at all.
Take a peek at this bit of Institutional history of leprosy in India,
British government sent its Leprosy Commission (comprising both physicians and administrators) to India to investigate. The commission’s report in 1891 concluded, “the amount of contagion which exists is so small that it may be disregarded” . Initially, the colonial government accepted these findings but, under increasing popular pressure from England and within India, enacted the Leprosy Act of 1898. This law institutionalized people with leprosy, using segregation by gender to prevent reproduction. For the self-sufficient individual with leprosy, segregation and medical treatment were voluntary, but vagrants and fugitives from government-designated leprosaria were subject to punitive action. It was repealed in 1983 after the advent of effective multi-drug therapy for leprosy.
Current figures and claims
India recently made the dramatic announcement that leprosy was eliminated. Indeed, this is welcome news; does it mean that no more new leprosy cases will be reported? A more realistic picture appears to be along the facts and figures reported in this study.
The most striking trend in global leprosy in recent years is the decline in India, which reported 137,685 new cases in 2007, representing a decline of 74% from the 537,956 reported in 2000. This implies that India’s contribution to the global leprosy burden has declined from 73% to 54% of the world’s newly detected leprosy cases over these years. It is unclear the extent to which this decline reflects changes in ascertainment and criteria for new cases to be counted in India–e.g. Whether single lesion cases are being systematically counted, and whether cases are being counted only if the diagnosis has been confirmed by medical supervisors (both of which procedures have been used in India). Without such information, these important trends in India’s (and the world’s) statistics remain difficult to interpret.
According to the latest available information, intensive efforts are still needed to reach the leprosy elimination target in five countries: Brazil, India, Madagascar, Mozambique, and Nepal. In the United States there are approximately 6,500 cases of leprosy, 90 percent of which are in immigrants from countries where the disease is endemic. The number of cases with active disease and requiring drug treatment is approximately 600. There are 200 to 250 new leprosy cases reported each year, with about 175 of these being new cases diagnosed for the first time.
The above numbers are a sober reminder that the disease cannot be won be use of words, bold statements and incomplete information.
While we salute all those who have dedicated their time and effort in making the lives of leprosy afflicted better – social and medical, the task of eliminating irrational fears from the public seems quite insurmountable. Research and treatment of the lepromatous nature of our fears, our faith in believing, living and perpetuating myths by actions and words, needs equal attention.
In an imagined state of being safe from the microbe -we are the reasons for the existence of the thousands of leper colonies. As long as these colonies exist, they are reminders of our weakness of character and poor reasoning abilities. We cannot make claims of being moral, ethical or being in the possession of a scientific temper as a people.
Elimination of the disease will have to go hand in hand with the integration of the once affected and one’s in treatment back into civil society. That is entirely up to us. We can continue to be prisoners of our fears or conquer them.
Mobility-aids as school projects and shortening the path of integration of leprosy-afflicted, to be continued.
Leper King Source: History, Buddhism, and new religious movements in Cambodia / edited by John Marston and Elizabeth Guthrie.
For my Son, on his eighth B’day. To all the fears that paralyzed me before he was born and fears that constantly hover now, about his health and well being. Wishing him many many happy days playing and fixing with precision, bits and pieces of material trying to make them move. Wishing that he always remains curious and interested in the world around him.