Leprosy and Social Exclusion: A Study among theLeprosy Patients in Sanjay Gandhi Nagar, Moula-Ali,In City of Hyderabad, Andhra Pradesh. Srikanth M.V 1 and Aparajita Mishra 2 Social exclusion is a multidimensional process of progressive social rupture, detaching groups and individuals from social relations and institutions and preventing them from full participation in the normal, normatively prescribed activities of the society in which they live. In other words it is the outcome of multiple deprivation that prevent individuals or groups from participating fully in the economic, social and political life of the society in which they live (Rodgers & Gore,1995). The notion of social exclusion as an analytical concept originated in France in the 1960s and emphasized the risk associated with the breakdown of the social fabric through progressive rupture of the relationships between the individual and society and the ensuing loss of collective values (Bhalla, 1998; IILS, 1997). The main features of the social exclusion framework are a focus on process, in which deprivation is analyzed as a result of dynamic causal factors rather than as a measure of outcomes (Bhalla, 1998) and a focus on the social actors and power relations involved in the processes of exclusion (and inclusion) (Rodgers, 1995). Social exclusion is evident in deprived communities; it is harder for people to engage fully in society. In such communities, weak social networking limits the circulation about information, jobs, political activities and community events. However, social exclusion relates to the alienation or disenfranchisement of certain people within a society. It is often connected to a man’s social class, educational status, relationships in childhood and 1 Ph.D(CSSEIP), University of Hyderabad, Hyderbad-500046, Andhra Pradesh, India Email:[email protected]2 Ph.D (Anthropology)University of Hyderabad, Hyderbad-500046, Andhra Pradesh, India email: [email protected]
Transcript
Leprosy and Social Exclusion: A Study among theLeprosy Patientsin Sanjay Gandhi Nagar, Moula-Ali,In City of Hyderabad, Andhra
Pradesh.
Srikanth M.V1 and Aparajita Mishra2
Social exclusion is a multidimensional process of progressivesocial rupture, detaching groups and individuals from socialrelations and institutions and preventing them from fullparticipation in the normal, normatively prescribed activities ofthe society in which they live. In other words it is the outcomeof multiple deprivation that prevent individuals or groups fromparticipating fully in the economic, social and political life ofthe society in which they live (Rodgers & Gore,1995).
The notion of social exclusion as an analytical conceptoriginated in France in the 1960s and emphasized the riskassociated with the breakdown of the social fabric throughprogressive rupture of the relationships between the individualand society and the ensuing loss of collective values (Bhalla,1998; IILS, 1997).
The main features of the social exclusion framework are a focuson process, in which deprivation is analyzed as a result ofdynamic causal factors rather than as a measure of outcomes(Bhalla, 1998) and a focus on the social actors and powerrelations involved in the processes of exclusion (and inclusion)(Rodgers, 1995).
Social exclusion is evident in deprived communities; it is harderfor people to engage fully in society. In such communities, weaksocial networking limits the circulation about information, jobs,political activities and community events. However, socialexclusion relates to the alienation or disenfranchisement ofcertain people within a society. It is often connected to a man’ssocial class, educational status, relationships in childhood and1 Ph.D(CSSEIP), University of Hyderabad, Hyderbad-500046, Andhra Pradesh, IndiaEmail:[email protected] Ph.D (Anthropology)University of Hyderabad, Hyderbad-500046, Andhra Pradesh, India email: [email protected]
living standards and how affects access to various opportunities.It also applies to some degree to people with disability, tominority men and women of all races, to the elderly, and to youth(Youth Exclusion). Anyone who deviates in any perceived way fromthe norm of a population may become subject to coarse or subtleforms of social exclusion (Power and Wilson, 2000).
On the other hand, social inclusion, the converse of socialexclusion, is affirmative action to change the circumstances andhabits that lead to (or have led to) social exclusion. Socialinclusion is a strategy to combat social exclusion, but withoutmaking reparations or amends for past wrongs in an AffirmativeAction. It is the coordinated response to the very complex systemof problems known as social exclusion. The notion of socialinclusion can vary; according to the type of strategiesorganizations adopt (Leslie et.al. 2003).
Social Exclusion and LeprosyLeprosy is a chronic infectious disease caused by mycobacteriumleprae, which is transmitted during close and frequent contactswith untreated, infected persons (www.who.int). In much of therelevant literature, leprosy stigma is interpreted as ‘the chiefcause of the social and economic dislocation that people affectedby leprosy experience’ (Nicholls, 2000). However, the analysis ofleprosy solely through the lens of stigma has caused research toremain quite insulated. This approach has been countered by anincreasing number of authors, as the causes of stigma have beenfound to be context-specific (Biljeveld, 1977; Gussow and Tracy,1968; Jopling, 1991; Scott, 2000).
Leprosy is an age old disease. Leprosy patients not only sufferbecause of their disease but also due to the deeply rooted age-old attitudes and behavior of family, society and communitymembers relating to disease. The fears and the prejudicesregarding the disease of leprosy and leprosy patients remainingrained and persistent. The people are ignorant about thevarious stages of the disease which remains hidden from thesocially till the end product of deformity and social exclusion.Although, leprosy is easily treatable and no costs to thepatients but still people consider leprosy as a public as well as
social health problem at a national level. From the earliesttimes leprosy has been a disease set apart from all the othersand in a great many communities its sufferers has been rejectedby society (Bryceson, 1990; Jopling, 1991; Nichollas, 2000). Eventhose who are clinically cured still suffer the consequences oftheir disease (Collier and Seaton, 1997 De Stigter, 2000).
However, Leprosy is a significant public health problem in India.While almost all the states have leprosy problem, the nine statesof Andhra Pradesh, Tamil Nadu, Bihar, Maharashtra, Bengal,Orissa, Assam, Karnataka and Uttar Pradesh have maximum number ofcases. According to the present report, India has the alarmingshare of global new leprosy cases. According to the government( Health and Family Welfare Minister, Gulam Nabi Azad) total2,28,474 new leprosy cases detected world-wide out of which Indiacontributed 1,26,800 cases which is about 55.5 %reported in 2010.Now the matter of concern is whether it is possible to eradicateleprosy from the country? In this regard Health and Familywelfare minister, Gulam Nabi Azad said the ministry is nowconcentrating on achieving elimination of leprosy at districtlevel during the 12th plan (2012-2017). It would be done throughearly case detection, case management and capacity building ofMedical/ Para-medical staff and community workers besidesimproved monitoring and supervision. (The Hindu, 15th march 2012,pg, 18)3.
Leprosy was never considered as a ‘disease’ like other diseases.According to the literature survey in India, leprosy isconsidered as a condition caused due to wrath of supernaturalforces or sins committed. Therefore, in case of India more thanleprosy as a disease, the patients face the disease of ‘stigma’social death at family, community, society and work places.Hence, the patient is deprived of bio-psychic needs of affectionand belongingness particularly due to deformities caused byLeprosy as compared to other diseases. Here the concern is whatcan be done to educate the people, the members of the family,community and public at large about eradication of
3 The Hindu (2012), “India's Alarming Share of Global New Leprosy Cases”, 15th March, pp.18.
stigmatization? In India, there are several types ofdiscrimination on the grounds of caste, religion, language,gender, class and tribe. In such a situation a question arises asto- what kind of social change strategies would be initiated forintegration of treated Leprosy patients and eradication ofstigma?
Much of the current work on leprosy is predicted in externallydefined, de-contextualized discourses framed by concepts likestigma, social exclusion and rehabilitation. These discourseshave constrained and influenced the language through which peopletalk about and, presumably, experience the disease. An awarenessof these constraints is important in interpreting what peoplesay. Social exclusion is another development related term throughwhich the experience of the leprosy affected people is sometimestranslated.
Social Problem or StigmaGoffmann (1961) refers to stigma as an attribute that is deeplydiscrediting. He says it should be seen as a language ofrelationships. The classic theory on stigma, by E. Goffmann(1961) suggested that the stigmatized individual will definehimself/herself as no different from other human beings but thosearound him/her will define him/her as someone set apart. Thus, wesee that there is a gap between the perception of the patient andthat of others in the society. Sometimes patients themselvescontribute towards stigma. Self stigma is caused by thosepatients who passively act according to the directions. In theprocesses their self image is lowered. In sociology this processis called social labeling
Warren (1972) states that, much of problem connected with stigmais in the minds of the patients themselves who pass on the to oneanother all the stories they know of people who have beenrejected and ostracized and assumed that they face a real problemin trying to be accepted by the society. In India, the stigma andhistorical connections associated with leprosy are very strongand deep.
Hence, Leprosy has been described as a neglected tropical diseaseand social killer because it causes disability, has economicimplication and results in social exclusion compared with otherdiseases like malaria that are serial killers (Jeffrey Sachs 2007),Goffman (1968) has provided the most widely accepted definitionand description of stigma referring to bodily signs designed toexpose something unusual or bad about the moral status of thesignifier. Stigma itself is a complex issue, with the capacity toaffect all facets of a leprosy-affected person's life.
On the basis of an anthropological study combined with historicalinvestigation, this study will help to know the people’sresponses towards leprosy prior to the discovery of a cure forthe disease. The literature reviews indicate that the ambivalentperception of leprosy sufferers as anomalous figures led to theirambivalent segregation within the framework of the community. Theanalysis of this dual ambivalence is revealed as capable ofreconciling two approaches to the study of deviance, grounded inconflicting assumptions concerning individual and culturaltolerance of ambivalence: the first focusing on ambivalentperceptions of social deviants, and the second dealing withambivalent behavioral reactions towards them.
James Staples (2008) studied the leprosy patients of Bethanycolony in South India. His book ‘Peculiar People, Amazing Lives: Leprosy,Social Exclusion and Community Making in South India’ sets out to challengethe widely held and deeply ingrained perception that peopleaffected by leprosy are victims of the most terrible scourgeimaginable. The experiences of those living in Bethany a self-established leprosy community in South India tell ratherdifferent, more nuanced stories about what it is like to haveleprosy at the unset of the twenty first century. In his bookrichly ethnographic portrait of Bethany people’s lives whether athome in the leprosy colony, away begging in Mumbai orrepresenting their histories through drama performance, JamesStaple also explored how this apparently powerless groupappropriates, embodies and redefines dominant ideas about caste,religion, the human body and Indian ways of knowing and being inthe world. They do so, as the book reveals, against the backdrops
of colonialism, missionary endeavour, vernacular Christianity,Hinduism, medical practices, development and the State.
Social Aspects of Leprosy in IndiaIn India, leprosy poses a major health problem, leprosy, althougha medical problem is accompanied by social aspects. Leprosy inIndia is from the Sanskrit Kustha or Kusth, which may or may notcorrelate with that which bio-medicine now defines as leprosy.The historical Kustha refers to a much broader range of skin-related disease than modern day leprosy (Wise, 1845). Wise hastaken Charaka Samhita as his key text and again described that,“When a person dies with (Leprosy) Hindus believe that the personwill be affected with it in the next life, unless he/she performspraschitta, penance” (Wise, 1845, 258).
Stigma prevents the total cure. However, in India this leprosyaffected individuals are not considered as those are the victimsof germ over which they have little control, but as theindividuals who have not observed certain codes of conduct,including practices concerning eating, defecation, exercise andsexual intercourse. This is also consistent with Hindu Law. TheLaws of Manu, said to have been compiled between the years 1 and500 of the Common Era (Burnell and Hopkins 1971,xxiv), describeleprosy as a consequence of the affected person’s bad Karma in aprevious life. Manu states “some evil minded persons for sinscommitted in this life, and some for bad actions in a precedingstate, suffer a morbid change in their bodies. They bear themarks of their yet unexpected crime in the human form (so that)an atrocious sinner becomes leprous”. (Stranger, 1859, 155)4.
It is generally recognized that in the case of leprosy, socialtreatment has priority over medical treatment. As far as socialscience research in leprosy is concerned there are a number ofstudies both by national agencies and individual experts. Thesestudies were conducted in different areas of the problem.(Morankar, 1987).
4 Strange, T. (1859). “Hindu Law”, Principally With Reference To Such Portionsof It as Concern the Administration of Justice, In The King’s Courts In India.Third edition, Vol 1. Madras.
According to the existing literature on disability andrehabilitation in a relation to leprosy can be classified underthe three broad perspectives similar to that of the literature ondisability in general.
Now, my main aim is to understand these three dimensionsthoroughly to study the facts how lepers are socially excludedand how far the process of inclusive measures helped lepers fromsocial exclusion.
Significance of the StudyAlthough, leprosy is easily treatable and no costs to thepatients but still people consider leprosy as a public as well associal health problem at a national level. On the basis ofavailable literature this study will help to know the negligenceand tolerant role of the society towards a leprosy patient andhow they are deprived of from their rights and social roles. Howthey are excluded from all the social and economic activities andfrom their main stream. The study will also attempt to know thesocial awareness of the leprosy patients and the inclusionpolicies implemented by the government towards their exclusion.This study will try to focus on the social aspects of leprosyfrom the grounds of inclusion and exclusion.
Selection of the Study AreaThe study is conducted in Sanjay Gandhi Nagar Leprosy Colony,located Uppariguda, Moula-Ali. This colony comes under theMalkajgiri Municipality Corporation (GHMC). In this leprosycolony a significant number of leprosy patients along with theirfamilies are staying together. This colony is located in thecity, and comes under urban settlement but still they are stayingin the demarcated boundary of the leprosy colony excluded fromthe main stream settlement, which also made researcher to conductthe field work in this colony.
Theoretical Proposition
This study is primarily an effort to explore personal experiencesof the leprosy patients. However, a number of theoreticalpropositions are framed.Major propositions are listed below:
Education of the leprosy patients enables them to cope withproblems associated with the disease and its treatment(illness behavior and illness career).
Socio-economic factors play a significant role in bringingabout acceptance of leprosy afflicted in the community andfamily.
Social factors have an important role in influencing patientcompliance.
Leprosy in general and deformity in particular has adverseaffect on the patients self esteem, social interactionoccupational status, marital relations and interpersonalinteraction in the family.
Objectives of the Study1. To bring out details of intimate and personal experience and
perception of the disease by the leprosy patients throughrepeated in-depth interviews and their position in thesociety.
2. To examine interpersonal relations in families of theleprosy patient and the ways in which patients and theirfamilies have been coping with the crisis through longillness career.
3. To know the aspects of social exclusion created by thecommunity and society towards the patient and its family
4. To compare the problems and experiences of the urban leprosypatients belonging to different socio-economic levels,relating to disease career and treatment.
5. To know the role of government organizations and NGOs inreducing social stigma faced by the leprosy patients andtheir changing social-economic status after getting cured.
Tools and Techniques of Data CollectionA qualitative framework is applied to explain the experiences ofthe people affected by leprosy and shows how different groups(such as women and beggars) are affected in different ways,
experiencing different processes of exclusion and outcomes ofdeprivation. Qualitative tools and techniques, observation (bothparticipant and non-participant), focused group discussions, keyinformant interviews and case study methods, are used to get adetailed account of the life (both social and family),experiences of the leprosy patients and how this disease turnedas a social trauma for them and get deprived of from all theirsocial rights. However, most of the qualitative data was obtainedwith validated semi-structured interviews. The following itemswere included in the interview-guideline: basic knowledge onleprosy, social participation, self-care, discrimination, socialrelationships, exclusion, restrictions and self-esteem, benefitsreceived/receiving from government and NGOs for the upliftment.The interviews were also recorded for reasons of accuracy afterconsent of the interviewees had been obtained. These tools alltogether helped to understand the peoples’ concept and viewstowards leprosy patients in present era and the disease itself asa social and a cultural issue as well. SPSS software also appliedto obtain the quantitative information and for the analysis ofhouse hold census data.
Data from secondary sources are gathered from books, articles,published reports and unpublished dissertations, census reports,government reports and internet.
The statistical details of the study area is given below (FieldSurvey)
Distribution of the Population based on Age and SexAge Male Female Total
Distribution of the Population Based on Sub-Castes
Leprosy Stigma and Social ExclusionThe medical history of leprosy goes hand in hand with its socialhistory. For hundreds of years leprosy has been known both as aparticularly severe physical condition and as an extremelystigmatized social phenomenon.
Much of the current work on leprosy is predicted in externallydefined, de-contextualized discourses framed by concepts likestigma, social exclusion and rehabilitation. Leprosy isassociated with extreme prejudice, fear, aversion and socialexclusion5
Causes of StigmaMany factors contribute to the stigma of leprosy, and these varyacross continents and communities. Some of the common reasonsare, Beliefs about the Causation of Leprosy, Death Sentence, Fear
5 Brown W. (2006) Can social marketing approaches change community attitudestowards leprosy? Leprosy Review,; 77: 89–98.
of the Contagion, Disability and Deformities, Odour, Self-stigmatization, etc
This research work also applied the above perspective to ananalysis of how stigma affects the lives of leprosy workers in anurban leprosy project (ULP) in India. Falling prevalence rates,changes in leprosy policy and the diversi cation of leprosyfiorganizations activities has meant that leprosy-affected peopleoften nd that their particular expertise is no longer needed. fi
The leprosy affected people argue that their marginalizationwithin the organization is a result of the stigma associated withleprosy work. Though there is undeniably stigma attached to theleprosy workers’ role, this article will demonstrate that such anoversimpli cation of the situation may serve to hide the powerfiand politics at play in the stigma process.
Hence, stigma plays a key role in the creation and maintenance ofleprosy affected people’s identity and is utilized as a strategictool in the struggle for in uence between different groupsflwithin the organization. Rather than being passive victims, theleprosy affected people creatively engage with this stigma andattempt to control its effects.
Majority of the leprosy affected people while being interviewedstated that they do not want to go back to their own villages orcommunity. This is because they have an inferiority feeling thattheir family members, society and community may not accept themwith respect. However, it is analyzed from the field data thatself-imposed stigma is a major cause, which forces them todifferentiate and exclude themselves from others. Hence,experiences of leprosy have been suppressed by the term ‘stigma’.Some of the patients stated that they do not want to mingle withothers with their deformed bodies. They do not want other peopleto look down and humiliate them because of their deformed bodyparts and ugly faces. They would feel uncomfortable wheneverpeople stare at them. It is this complex feeling of the patientswhich has also kept them away from the mainstream.
Insider and Institutional Perspectives on Beginning
In spite of the dramatic advances in its treatment, leprosy isstill regarded by both medical and social scientists as auniversally stigmatized health condition, and even as the epitomeof stigmatization. This pervasive view relies upon historical andcontemporary evidence that indicates that across cultures leprosysufferers have been feared, shunned, ostracized, and subsequentlyobliged to live by begging. To this day, even in countries wherethe rate of leprosy decreased long ago, the word 'leper'continues to be associated with social rejection.
James Staple has taken the same stand and noted in his studyamong the leprosy patients in Bethany Colony, South India thateveryday life of those engaged in begging, reveals the actualpractice and experience of begging is rationally and dynamically,(re)constituted and embodied. He started with the exploration ofhow begging is constructed and/ or interpreted subjectively, bothby those who beg, and by the non-begging people and those wholive along side. He also discussed about the important differencebetween begging as it is practically constituted in the ‘field’and begging as it is invoked and talked about in other context.With regard to begging James Staple talked about the distinctionapplied to the leprosy patients by the outsiders known asVictorian Distinction between the ‘deserving’ and ‘undeserving’poor (Staple, 2007, 180-81).
However, begging features prominently seen as an identity andeconomic choices for people of Sanjay Gandhi Nagar colony, withthis practice being, in many ways, as defining of the communityas is leprosy. As such, begging constitutes a useful embodiedpractice through which the identity of a ‘leper’ is associated.In Sanjay Gandhi Nagar leprosy colony particularly the practiceof begging started with the formation of the settlement. However,the entire leprosy affected persons are not involved in beggingalso. Begging is dependent on the economic condition of thepatient and his/her family. Those who are involved in begging,they beg in the local areas shops, bus stops, traffic posts,railway station, etc.
In terms of distinguishing who is going for begging, there is nodefining factor. Children and most young adults (18-25 years
old), were discouraged and excluded from begging by their leprosyaffected parents. So were the very oldest, most deformed leprosyaffected people, for whom welfare benefits are available in thecolony. Otherwise, however, economically the settlement is veryheterogeneous. Participants in begging varied from the verypoorest in the community. As the field data reveals, all theleprosy affected people are not beggars and some of them evenstopped going for begging because of the better economiccondition of their family. On the other hand, all those who gofor begging are not leprosy patients, but they are the poor andthe needy.
Community Making and Social ExclusionSanjay Gandhi Nagar Leprosy colony is purposely and voluntarilyfounded, of which they do not have the patta for this land.However, in this colony they are staying as a family. Somemembers expressed their community, their family and their societyexcluded them, their own relatives treated them badly andexcluded them. Hence, they continue to live with other leprosyaffected individuals in this colony. Irrespective of differentcaste, different religion, and different economic status theyconsider themselves as ‘Kustha Kulam’ (as one caste that isleprosy).
Though it is a heterogeneous community but they express a strongseence of belongingness. However, during the study it was noticedthat the leprosy colony people not help each other and extendtheir help to other lepers throughout the city like ShivanandaLeprosy Colony, Kukatpally, Victoria Memorial Hospital,Dicchpally, etc. The youth and the elders come together and offer
their helping hand and support both physically and economicallyto other leprosy colonies inside the city of Hyderabad andSecunderabad. They consider themselves as one. They have formedtwo organizations which are voluntary in nature namely SanjayGandhi Nagar Colony Association and Yuvatharam Youth Association.These organizations take care of the internal disputes and otheraspects.
Role of Government and Non-Government Organizations In Sanjay Gandhi Nagar Leprosy colony the families of leprosyaffected patients are getting the social support from thegovernment as well as from the NGOs. The children are gettingeducational facilities in the public schools along with otherchildren. They are not discriminated either by the schoolauthority or by the other children and their parents.
Economic RehabilitationA poor person affected by leprosy is doubly disadvantaged andoften stigmatized. Disability due to nerve damage furthercompounds the problem. They need training and monetary supportfrom NGOs and Government and also some community based vocationalactivities. In 2009, under SER, approximately Rs. 5,775,750 wasmobilized to support 313 individuals, through government schemes,LEPRAs Revolving Fund, support from philanthropists, and old age,disability and widow pensions (LEPRA Society, Final Report,January,2011).
Working of NGOs in Sanjay Gandhi Nagar Leprosy ColonySanjay Gandhi Nagar Leprosy colony is maintained by MalkajgiriMunicipality authority since its beginning. Two NGOs have beenworking for the community in this colony. The first one is aninternational NGO named Sasakawa-India foundation from Japan andthe other one is an Indian based NGO known as LEPRA-India workingfor the benefit of the leprosy patients and restore them withtheir self built in capacities within them. It conducts awarenessprogramme about the disease, symptoms, process of early detectionand to undergo treatment without neglecting, and other relevantinformation and prevention regarding the disease.
Puttaparthi Sai Baba Memorial Trust works for the development andupliftment of the colony people. This trust also provides theneedy support to the leprosy affected people in particular andcolony in general such as, health, education of the children ofthe leprosy affected parents (running a school near to thecolony), provides food to the leprosy-affected patients and theirfamilies once in a month, sanitation and drinking water supply,etc.. Seva Bharath is a Christian NGO, working for adultliteracy.
Few voluntary organization both Hindu and also Christianmissionaries visit colony to distribute some food material (rice,oil, vegetables) for cooking to all leprosy patients. ASHAanother NGO also works in the colony which creates awareness onTB, HIV-AIDS and distributes medicine to the TB affected and HIVaffected patients. Reduction of Social StigmaGovernment Agencies and Leprosy NGOs have been responsive tochanges in the status of leprosy as a contagious disease. Thecurrent approach remains primarily focused on its identificationon biomedical treatments with the promotion of community basedcare as opposed to institutional facilities, and an emphasis onovercoming stigma through the economic development of individual.The rhetoric has shifted from top-to down on more pluralisticway, patient-centered approaches, which are also manifested inall kinds of projects currently being promoted. However, culturalfactors remain resolutely subordinate to medical and economicones, and there persists an overarching assumption of‘normalities’ to which it is considered possible and desirablefor leprosy-affected people to return to post-treatment. NGOspartnership with GOs made many efforts in reducing the stigma ofthe leprosy parents as stated by the NGOs and GOs officials.
They strongly believe that the social stigma of leprosy personwill only remove when he/she him/herself tries to come out ofstigma. NGOs and GOs conducting many livelihood training coursesfor leprosy patients such as gauss bandage making, fabrication-garbage tricycle-making for GHMC, preparing candles and Vaseline
Management committee of the Colony
Interaction in public places (market, bus stop, train stations etc.) while begging.
to earn some money and will stand on their own legs and alsosupport their families by generating income of these livelihoods.
Government and NGO together are working for removing the stigmathrough IEC (Information Education and Communication) the sameactivity is so called as ACSM (Advocacy Communication SocialMobilization) through this approach Stigma can be controlled(Source; Interview with the Doctor at SRH).
Though it is a community of the socially excluded, Sanjay GandhiNagar Colony and its inhabitants are intricately linked to thevast range of other people and institutions that spider out wellbeyond the physical and imagined boundaries that demarcated it asa leprosy colony.
Diagram 4.1: Sanjay Gandhi Nagar Colony and its Social Networks.(Source: Field Survey)
ConclusionThe provision for appointing a trained Counselor to educatepeople with various methods of curability and treatment and tomake a positive notion among the people that Leprosy can be curedif proper course of medications and treatment is followed.
There should be a strategy to be formulated for implementation ofawareness programme on leprosy. In the new plans to eradicatestigma in leprosy, they have selected school children as agents,those who can pass the message that leprosy has a cure, if it isearly detected and diagnosed. This message has to be carriedforward with those agents and create awareness in all the ruralareas of India and awake all illiterate people to seek propercare for free of cost for the leprosy disease. If the child iseducated and aware about the disease then it can pass the messageto the family as well as to the society and community in general.
SuggestionsGovernment need to take proper measures to relook whether thepeople affecting with leprosy are taking proper care of theirhealth, food and nutrition or not? Whether they are following themedical instructions properly or not?
To find out the early stage or newly detected case government orNGOs working in the field of leprosy should appoint a personbelonging to the patient’s community and should train that personabout the early symptoms of the disease, which will be helpful tothe new detection.
High risk control methods such as early treatment, fast recoverymethods should be followed by the medical institutions. Ifagencies still wish to pursue economic enterprises and
rehabilitation projects as sources of income generation for theleprosy affected, then their planning needs to engage with theways leprosy-affected people can empower themselves rather thanwith assumed, abstract models of ‘empowerment’ and participation.
The existing skills of the leprosy affected people after thedeformity should be utilized to make them empowered and effortsshould taken to reduce the self stigma and making them selfreliant.
The agencies and NGOs basically focusing on the areas where thereare highest concentrations of leprosy-affected people, such ascities with well-developed infrastructure and leaving theleprosy-affected people from rural areas and mountainous andhilly areas poorly served, where the government should focus moreto reduce the leprosy and stigma. The needs of the cured leprosy-affected patients are also sidelined, the threatened eradicationof the category by which they have defined themselves leavingthem displaced.
Good and well planned leprosy eradication programme and educatingthe public can help in reducing the social stigma.
(The Authors are grateful to the informants of Sanjaya GandhiNagar Leprosy Colony. Special thanks to Dr. Ajiliu Niumai,University of Hyderabad, for her support and help during thepreparation of this paper.)
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