Leprosy and the State
Internationally shaped policy on leprosy eradication in India has seen a shift in focus from institution-based care to community-based rehabilitation and, in Andhra Pradesh at least, the integration of leprosy services into general medical care. In tackling “encroachment” and “vagrancy”, both of which are seen to undermine state visions of modernity, there has also been an increase in municipal action against leprosy deformed people making a living from begging on the streets, without addressing their need to make a living. These moves have weakened the capacity of leprosy affected people to mobilise themselves as a distinctive discriminated-against group, while implying that their difficulties are located foremost in a biological condition, rather than in negative social interpretations of that condition. This paper aims to highlight the ways in which policies, ostensibly designed to improve the lot of leprosy affected people, simultaneously perpetuate prejudices against them.
JAMES STAPLES
I
My aim here is to question the implications of state policies and the everyday practices they generate for people affected by leprosy and the population at large. I will argue that there are important differences, both between official policy and its practical interpretation (in the form of local government and NGO practices); and between official contemporary rhetoric and the older legislation that continues to shape attitudes towards leprosy affected people. Beyond these fractures between official rhetoric, outmoded legislation and the everyday practices of those involved in implementing leprosy programmes, we also need to examine the presuppositions that underpin leprosy policy. How, for example, does the current strategy balance the self-acclaimed needs of leprosy affected people with those of the general population? Are the voices of leprosy affected people in India considered in the formulation of policy, and, if so, to what extent? And what broader factors – relating, for example, to ideals of nationhood and modernity – also come into play in the formulation of policy?
In order to address these questions, I begin here with an overview of official policy, a collection of strategies constructed not only with the WHO but also on the back of colonial legislation rooted in the tail end of the 19th century. I will then use my ethnographic encounters with policies on the ground to examine how these strategies play out in practice and to highlight the differences and connections between the two perspectives. My field research, conducted in a self-run leprosy community in Andhra Pradesh, also included encounters with employees of state leprosy services; with managers of major leprosy NGOs; and with leprosy rights campaigners, the latter category including leprosy affected people.3 I will also explore the existing legislation on leprosy – both as written statute and legal practices
Official Policy
I will begin, then, with a review of the public visions, aims and assumptions that have been generated by government policy, and which underpin the work of most leprosy NGOs. Leprosy was publicly recognised by the post-independence Indian government as a health problem with the launch of its National Leprosy Control Programme (NLCP) back in 1954-55. This programme later changed into the NLEP in 1983 [Duggal et al 1988:14]. The name change came with a commitment from the centre by the then prime minister, Indira Gandhi, to eradicate the disease from India by the year 2000. In 1991, at the 44th World Health Assembly, the global community published a resolution to eliminate the disease as a public health problem by the dawn of the new millennium.
By the time I began fieldwork in a self-run leprosy community in 1999 the deadline was about to pass unmet. This was despite the fact that the definition of “elimination” had already been qualified by the WHO as achieving a prevalence rate of less than one untreated case per 10,000 members of the population. At this level, the WHO suggests, the disease will die out naturally.4 This is a view that has been strongly contested5 [Staples 2004:7172]. Nevertheless, “elimination” remained the ultimate goal at the third International Conference for the Elimination of Leprosy in 1999. With 8,00,000 new cases still emerging annually (lepra.org.uk), the conference launched a new Global Alliance for Leprosy Elimination. The WHO’s “final push strategy” more recently set out to bring those countries with prevalence rates above the target into line by 2005.6 The impetus for policy formation in India has thus been international, drawn up in response to perceived global health needs.
In India, the NLEP began as a vertical, top-down programme, headed by a National Leprosy Eradication (NLE) Commission, with an NLE board, a leprosy division at the ministry of health and directorates of health services at the state level cascading downwards. The work of national and international NGOs were incorporated among these layers and were, according to the NGO representatives I interviewed, central to the programme’s activities. Many of the larger among them were also members of the International Federation of Leprosy Organisations (ILEP). At the bottom of this hierarchy were the government’s leprosy control units, temporary hospitalisation wards, survey, education and treatment (SET) centres and urban leprosy centres that worked directly with leprosy affected people. Each of these was staffed with specified numbers of medical officers, non-medical supervisors, laboratory technicians, physiotherapy technicians, health educators, paramedical workers, drivers and clerks [Umashankar 1987: 9-10].
The key government strategy, from the early 1980s onwards, was based on the new multi-drug therapy (MDT), a medical advance which led to the declaration that institution-based rehabilitation – that is, leprosy colonies – were outdated [Gopal 1999: xi]. With modern drug therapy, leprosy is rendered noncontagious within days of the commencement of treatment, eliminating any medical necessity for patients to be segregated from their communities. The idea of community-based rehabilitation (CBR) – often heralded as a more cost-effective option [Barnes and Mercer 2003:146] – is now ubiquitous, and replaces the arguments for segregation that dominated the latter decades of the 19th century [Buckingham 2002].
During the 1980s, the NLEP also stressed “educating the public, for better case detection and treating a higher proportion of these detected cases. An important component of this new strategy is health education” [Umashankar 1987:11]. Health education operates on the assumption that once people understand the “scientific facts of leprosy” [Mutatkar 1979:xv], the stigma associated with it will rapidly disappear, and access to treatment will become correspondingly easier. The government’s “mass awareness programme” continues, based on the perceived need to inform people, as Ashok Kumar, head of the Leprosy Division of the health services put it, “that leprosy was not a curse inflicted on them by the gods but a disease that could be treated very easily” [Kumar, cited De Sarkar 2003:152]. This is a view that finds support in the NLEP’s earlier campaign literature [Umashankar 1987:11] and among those currently working in the leprosy field. Stigma was declining, as a rehabilitation officer explained it to me, because of “education, good treatment that leads to less deformity, and increased awareness”.7
Although there has been an enduring emphasis on leprosy as a predominantly medical problem, since the mid-1980s socioeconomic factors have also received greater emphasis. The 1984 International Congress on Leprosy in Delhi, for example, was the first to include a full day on social aspects of the disease [Duggal et al 1988]. There are several reasons for this shift. The first is that development discourse in general was becoming more pluralistic [Gardner and Lewis 1996:21] and, with a new stress on “bottom-up” approaches, the twin notions of “empowerment” and “participation” have become increasingly prevalent, at least in policy guidelines if not in practice [Pottier 1993; Gokhale 1994]. International leprosy organisations – such as the Japanese Nippon Foundation – have also been vocal in demanding a shift in emphasis from the physical disease to policies aimed at countering social prejudices.
Agencies’ shift in focus is, of course, also closely related to the changing nature of the leprosy field. With “elimination” of the medical problem in sight, the survival of leprosy organisations in India has become dependent on extending their expertise to non-medical leprosy problems, or other issues altogether. Major leprosy NGOs have been expanding their remits to encompass such issues as HIV/AIDS and tuberculosis. An implication of this has been that leprosy affected people – those already marked with the disease – have begun to see themselves as marginal even within leprosy NGOs.
Responding to this shift in emphasis, organisations have begun to draw on the WHO’s broader definitions of disability. These definitions – also highly contested8 – describe the impact of a disease on an individual in terms of three areas: impairment, activity and participation. Participation – defined as relating to “the social consequences of impairment, such as economic dependence and social exclusion” [Nicholls et al 1999:xi] – is the area that most captures the agencies’ imaginations in a world where leprosy is seen as on its way out. The new outlook is captured in a speech from Arole, director of a leprosy project in India, at the International Leprosy Association Conference in Beijing in September 1998:
A change of paradigm is needed, recognising people as subjects,
not objects, and workers as enablers and not providers. Interven
tions must be supportive and responsive, empowering rather than
diagnostic. They must include addressing the needs and resources
of the community and extending its capacity [Arole 1998, cited
in Nicholls et al 1999: 2].
Social and economic rehabilitation (SER), which promotes the idea that “stigma” which is not eradicated through education can be challenged through economic development, is the major prong of post-medical work. SER is treated, for the most part, as a synonym for “social aspects of leprosy”. A regular income, says ILEP’s literature, can bring respect and overcome stigma [Nicholls et al: 3], a sentiment reiterated by the rehabilitation officers I interviewed. One told me about her “client”, a leprosy affected woman who had been abandoned by her husband. With a loan
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from the NGO and a related grant from the government, she had successfully set up a business and her husband had returned to help her run it. “If a patient has deformities”, she argued, “if he is economically well-placed then he is still treated as normal. People won’t accept a grossly deformed beggar, but they will accept a grossly deformed millionaire”. Consequently, business loan schemes were major practical components of the new strategy at the NGO level, along with house building loans, scholarships and vocational training schemes.
While government agencies and leprosy NGOs have clearly been responsive to changes in the status of leprosy as a contagious disease, the current approach remains focused primarily on its identification and biomedical treatment. This is followed up with the promotion of community-based care as opposed to institutional facilities, and an emphasis on overcoming stigma through the economic development of the individual. Among NGOs, there has been a shift of rhetoric from top-down to more pluralistic, patient centred approaches, which is also literally manifest in the kinds of projects currently being promoted. However, cultural factors remain resolutely subordinate to medical and economic ones, and there persists an overarching assumption of “normalcy” that is possible and desirable for leprosy affected people to return to post-treatment. In other words, the wider conditions of their existence – those shaped by existing political structures, for example – are mostly seen as beyond the scope of leprosy agencies.
As my first main period of fieldwork was drawing to a close at the end of 2000, the responsibilities of the NLEP were being decentralised to state governments – on the WHO’s advice – and leprosy services were being integrated into the general healthcare system. By 2004, these changes had mostly been put in place, and the government’s stated aim was to sustain political commitment to eradication at all levels, while further building the capacity of general healthcare staff to diagnose and treat leprosy. Other objectives included the prevention of over-reporting of new cases; a wider coverage of leprosy services, especially in remote rural areas and urban slums; and – towards the end of the list
Policy in Practice
Given that both the government and the larger agencies increasingly operate through smaller, local NGOs, there are often differences between official policy and what happens when that policy is translated into practices by thinking, embodied people with their own agendas [Cohen 1994].
Despite the neatly set out hierarchy in the NLEP’s structure (subsequently remodelled to fit into the general healthcare system), by the late 1980s discontent among the operational members of staff was already noteworthy. Yellapukar, for example – an NLEP consultant and a former director of leprosy health services – cites staff attitudes as a major stumbling block to the effective implementation of government policy:
While their aspirations for [a] better deal in terms of pay and allowances, facilities, opportunities for promotions, status, etc, are quite natural and have to be given due consideration by the authorities, the attitude exhibited at times to strike [from] work on unjustifiable grounds which could be settled across the table, reluctance to carry out certain duties which they were doing for years together and threats to close down – all such things create an undesirable atmosphere, where the sufferers are likely to be the patients – a fact which is forgotten by the workers [1987: 10].
Voluntary-sector employees were even more disgruntled, he suggested, because their salaries tended to be lower than those of government employees. Yellapukar also notes the reluctance of doctors to join the programme, those who did so becoming stigmatised by other members of their profession. A study by Duggal et al (1988) at around the same time records similar responses, with postings to leprosy control programmes seen as “a punishment”, and consequently met with low levels of motivation and antipathy towards the work [Rao 1982]. Worse still, leprosy workers “are not only most disinterested in their work but also exhibit stigma towards the disease” [Duggal et al 1988: 13].
The few staff I met in comparable positions 10 years later appeared more committed but, now dealing with the added stress of imminent eradication, were still dissatisfied. Pradeep, for example, was a government leprosy worker employed in the area where I did my fieldwork. His job was to collect leprosy drugs from his medical supervisor at a local government hospital, and to distribute them to leprosy affected people’s homes. His present concern was that, in incorporating leprosy work into the general healthcare system, his grade was to be integrated with that of a multi-purpose health worker, a lower grade on the government scale. Although this move had been resisted by his trade union, he told me that some of his colleagues believed their long-term prospects might be improved by losing the “leprosy” tag from their titles. In short, leprosy work carried some of the same stigma as the disease itself. With leprosy work to be fully integrated into general healthcare, there also appeared to be a real threat to jobs. Elimination of leprosy was an issue not only for those affected by the disease but also for institutions and their employees.
Other leprosy workers expressed frustration at their work being driven by government demands. “They (the government) wanted to get rid of leprosy by 2000, but it’s still here, so we’ve been given an extension, but things have got to be done very quickly”, as an urban NGO fieldworker explained it to me early in 2000. “That means we’re currently having to do a rapid survey of the entire population (of the city). In practice it means we’re all spending too much time counting and not enough following up, checking that patients are getting treatment and so on”. The government, he seemed to be suggesting, was interested in statistics; leprosy field workers, on the other hand, were more interested in serving leprosy affected people.
The managers I interviewed, while less willing to criticise the official lines of their organisations, nevertheless expressed anxiety about the future. “It mightn’t be so bad, we’ll just have to wait and see”, remarked one of them, hopefully. “First we only had until 2000, then it was 2002, now we’ve got another extension to 2005. Maybe there will still be more to do after that.” The other was pinning hopes on the NGO applying its skills to other diseases, such as HIV/ AIDS, which were gaining in prominence.
In beginning to look at how policy gets translated into practices, then, a slightly different picture than that drawn by official literature begins to take shape. Policies – and especially the move to incorporate leprosy care into the broader healthcare system
– are perceived by many practitioners to be driven by economic rather than health concerns, while others claim the continuous need for statistics hampers rather than aids efforts to administer treatment. The reluctance of doctors and others to work in leprosy programmes suggests more complex responses to leprosy rather than what the simple mantra of “leprosy is curable” can deal with. Finally, while SER now forms an important part of post-eradication work, it remains marginal to the main thrust of leprosy work and, as a consequence, under-funded and under-thought out. To these issues I will return. First, however, something needs to be said about legislation and practices relating to leprosy beyond the narrow confines of the NLEP. As the law shows, there are contradictions between the law and its enforcement on the one hand, and public rhetoric about leprosy on the other.
Leprosy Legislation
Under the Bombay Prevention of Begging Act 1959 – subsequently extended to cover Delhi – there are clear provisions for the segregation of leprosy affected people arrested for begging and other categories of beggars. Those believed to have leprosy, states the legislation, may be removed to a “leper asylum” (26i), either for the term of their detention or, where deemed necessary in order to administer medical treatment, for a longer period. However, given the absence of welfare benefits, begging was often perceived as a necessity by many of the people I worked with. So while the law was enforced with a relatively soft touch, there were instances during my fieldwork when the disabled, but non-contagious leprosy affected people I worked with were arrested and incarcerated in state leprosy institutions.
Alongside this legislation, the Hindu Marriage Act 1955 remains in force. The legislation permits a woman to divorce her husband if he is guilty of rape, sodomy or bestiality, and also cites leprosy – alongside adultery, cruelty and desertion – as grounds for divorce. The fact that nearly all the other acceptable grounds of divorce represent wilful acts of behaviour deemed socially unacceptable, implies a connection between leprosy and negative action on the part of the sufferer. If adultery, rape, bestiality and so on all require agency on the part of their perpetrators, then so, one might assume, do the actions that lead a person to contract leprosy. In short, the subliminal message this sends out adds weight to the idea, forcefully rejected and campaigned against by the NLEP, that leprosy is caused by curses from god. In this case, however, it is the law rather than perceived public opinion that implies leprosy is a moral condition and not just a disease.
What I am trying to illustrate with these two examples are the contradictions between the law, its enforcement and the messages it sends out on the one hand, and the stated objectives of leprosy policy on the other. While the law constructs leprosy as a highly contagious disease, the blame for which rests with those affected by it, official policy is to educate people that leprosy is curable and that treatment can best take place in the community, not in institutions.
View from Below
While elimination remained the central goal of global policy on leprosy, for the cured but disabled leprosy affected people I worked with, eradication was conversely perceived of as a threat to welfare benefits currently available from NGOs. If leprosy no longer existed, people reasoned, the infrastructure for channelling resources would start to disappear alongside the availability of resources themselves. Evidence that this has already started to happen, following the WHO’s announcement that leprosy had been resolved as a global problem,10 is to be found both in reports that donations to major leprosy organisations have declined [Staples 2004:81], and in the decisions of leprosy NGOs to incorporate additional diseases in their programmes. Such moves were seen by these organisations as necessary for their survival, and enabled them to utilise their resources most cost effectively. From the perspective of leprosy affected people, however, these shifts of emphasis left them feeling marginalised even within leprosy agencies. In short, eradication of leprosy meant eradication of what was presently still recognised as a disadvantaged identity from which claims could be made. The shared nature of this identity also enabled extensive networks of mutual support to be created: networks that the loss of a shared category would fragment [Staples 2004:76-77]. The disappearance of leprosy represented a loss of self.
From this sense of increased marginalisation, there had arisen a widely expressed perception among leprosy disabled people on the ground that the government had only a negative interest in them, in the sense that they wanted to render them invisible, either by eradicating their disease or, in some cases, literally removing them from the streets. The state consequently appeared to reject the attempts of leprosy affected people to enter the discourse on leprosy policy – largely, I would suggest, because their ideas could not easily be accommodated within a medicalised development discourse. The people I worked with, for example, wanted the leprosy-affected to be officially categorised as a scheduled caste; that is, to be legally defined as a distinctive disadvantaged group of people, for whom government reservations for jobs and college seats would be offered in order to redress the prejudice inflicted upon them by wider society. Their claims to this status – which my informants attempted to use in applying for grants to build pucca houses – were rejected. They also wanted to see a hike in welfare benefits for leprosy affected people across the country. While some states offered shelter and food rations, in others help outside the NGO sector was virtually non-existent. In Andhra Pradesh, the state pension for leprosy affected people was just Rs 75 per month, leaving no option for those with neither land nor a job but to go begging and risk arrest.
Within this context, state-promoted CBR tended to be viewed, as it sometimes is elsewhere [Ingstad 2001:778; Barnes and Mercer 2003:146-47], as a reluctance on the part of the state to commit fully to the welfare of leprosy disabled people. Notions of self-help and empowerment, as it has been embodied through self-established communities of the kind I worked with, may form the benchmark of official rhetoric, but the effect of policy is often quite the reverse. Furthermore, leprosy affected people saw any benefits they claimed from the state or NGOs – from pensions
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and food subsidies to loan programmes – as compensation for social injustice rather than the means by which to “rehabilitate” themselves. In short, they wanted handouts, not loans through which to pursue self-sufficiency.11
Discussion
By juxtaposing my interpretations of official policy and current legislation with perspectives from leprosy affected people, I have drawn out some of the problems in the relationship between “the leper” and the state. In this penultimate section I want to use these differences in perspective to identify and unpack the presuppositions that appear to underpin state policy on leprosy.
It is also important, in noticing differences between state perspectives and those of people affected by leprosy, not simply to dichotomise the two, valorising a particular “victims’ discourse” as the appropriate view, against a state perspective as entirely wrong-footed. For one thing, the views of leprosy affected people do not offer a single coherent perspective. The people I worked with were mainly cured, physically disabled leprosy affected people already living in leprosy colonies. Those being treated as out-patients and living in their home communities are likely to have a different take altogether. The same might also be said for state policy. As I have shown by comparing statute with more specific leprosy policy, the latter is far from consistent. Neither is state policy formulated in isolation. It is closely intertwined with international and NGO policies and activities.
More important, however, is the recognition that state policy on leprosy will inevitably differ from policy as leprosy affected people might like to see it because each is concerned with different problems. The state, on the one hand, has to concern itself with the health of the nation as a whole – not just with those already affected by leprosy – and does so against backdrops of international policy and national socio-economic concerns. Within this rubric, cured leprosy affected people will always be peripheral to mainstream leprosy policy. Although recommendations on policy must subsequently either accommodate or challenge the state’s broader concerns, creating spaces in which the voices of leprosy affected people can be heard needs to be included in the policy-making process.
The first assumption requiring scrutiny is that elimination in itself should be the most important goal of leprosy policy. While no one would dismiss elimination as negative per se, the particular elimination target – supported by the World Bank and to be met within a specified time frame – is shaped entirely by western influenced international health policy rather than locally defined needs. As such, it pays little heed to counter evidence that leprosy will not die out naturally once a given prevalence rate has been reached (see note 5), an assumption on which the formula that a prevalence rate of less than one per 10,000 equals eradication is based. Furthermore, achieving an overall prevalence rate approaching the target disguises the fact that in some areas in some states, the rate remains much higher. At the start of 2006, Delhi, Chandigarh and Dadra and Nagar Haveli still had a prevalence of 2 to 3 per 10,000 population, for example, with two Delhi districts having the highest prevalence in the country at 5 cases per 10,000 population.
By the same token, global rates as a whole would suggest that leprosy has already been eliminated, when it is clear that this is not the case. Statistics are not necessarily a helpful guide to assessing whether healthcare needs have been met. Elimination targets also encourage a focus on areas where the highest concentrations of patients can be treated most quickly, with a corresponding neglect of those in more remote areas where monitoring is more difficult and where patient numbers are not high enough to have a major impact on the statistics. Furthermore, as an NGO leprosy fieldworker complained to me, pressure to meet internationally driven targets not only directed leprosy workers’ attentions to enumerating rather than working with people, it also sidelined those who had been “cured” but remained stigmatised by the marks of their leprosy.
Another assumption underpinning policy is the idea that lay people see leprosy as a divine curse and that education is thus the key to tackling stigma. I am not denying the evidence that suggests links are made between leprosy and transgressions of alimentary, social and sexual norms in the present [de Bruin 1996:41]; nor that ‘sastric’ law cited leprosy as an impediment to inheritance for those same reasons [Buckingham 1997:59ff]. However, quite apart from the questionable logic that education necessarily reduces stigma [Farmer 1999:xxv; Staples 2004:73], I also would suggest that lay people’s understanding of leprosy is actually more complex than the simple reduction to leprosyas-curse can explain. Rather, contemporary ideas about leprosy are embedded in a mixture of colonially-formed understandings; local notions of untouchability, ritual purity and karma; various forms of media; and people’s direct encounters with sufferers of the disease.
In addition, the implicit link made between a belief in leprosyas-curse and “traditional” ideas as opposed to “modern” ideas of leprosy-as-medical-condition, suggests an underlying acceptance of an Enlightenment doctrine of progress from primitive to modern thought. Such a trajectory, however, is underdetermined by empirical scrutiny. It is true that the ‘Dharmashastra’ identified a relationship between leprosy and sin [Buckingham 1997:59ff], albeit a fluid one, but the significance of this needs qualifying. Firstly, the Dharmashastra was largely irrelevant to non-Brahmans [Mayne 1922:5; Buckingham 1997:62]. Secondly, there is strong evidence to suggest that references to leprosy in the Dharmashastra only became fixed as they were institutionalised under the British. In short, leprosy became a more absolute form of legal disability during the colonial era than it had previously been [Buckingham 1997:70] and, as a consequence, became more overtly stigmatised.12
Recognition that the social construction of leprosy as a stigmatised disease was a feature of the more recent past than contemporary references to traditional knowledge suggest is important because it challenges the basis on which leprosy awareness campaigns appear to be based. If attitudes towards leprosy were, at least in part, constituted by colonial legislation, then it is the legislation – rather than public attitudes per se – that needs challenging. It was, for example, the British-designed Lepers Act of 1898, a source of heated debate even within the colonial administration [Buckingham 2002:157-88], that led the institutionalisation of the “leper asylum” as a permanent fixture on the Indian landscape. Even though this legislation has belatedly been repealed, its implications remain, as I have shown, in current laws on vagrancy and divorce. Educating the public about leprosy, therefore, is useful only insofar as the structures that serve to reproduce attitudes are simultaneously dismantled.
In relation to this, despite a public rhetoric on leprosy that contradicts the tone of colonial-rooted legislation, it also appears that the contemporary state continues to create contexts in which leprosy affected people are stigmatised. The recent “India Shining” campaign may have been the brainchild of the electorally defeated Bharatiya Janata Party (BJP), for example, but there remains a broad political consensus that the streets need to be cleansed of, among other categories of people, deformed and begging leprosy sufferers. Begging, in particular, has been identified as a social problem to be tackled; a disturbance both to the local population and to India’s image on a global stage, impacting negatively on international tourism [Chaudhary 2000:293-94]. To my informants, however, begging provided a major income stream and, with it, a route to dignity. Their removal from the streets, alongside the NGO focus on community based rather than institution based rehabilitation, left many leprosy affected people feeling that it was they as a group of disabled people, rather than their disease, that was being eradicated. In short, there was a clash between the self-perceived needs of leprosy affected people and the state’s vision for a nation that mirrors the neoliberal values of the world’s wealthiest countries.
Existing concessions were inadequate to prevent leprosy affected people from begging, particularly when those engaged in the practice often aspired to share the “India Shining” enjoyed by the affluent. Access to cash was increasingly important if they were to provide for their families and marry their daughters relatively successfully. At the same time, those cured of leprosy found themselves not only marginalised by leprosy organisations but also by the integration of leprosy care into the general healthcare system. With the percentage of GDP spent on health down from 1.4 per cent in 1991-92 to 0.9 per cent a decade later [Zora and Woreck 2004], the cured but disabled leprosy affected people I worked with also found their general healthcare needs unmet. This was increasingly the case as they also began to suffer the degenerative effects of old age, but found themselves unwelcome in many hospitals. The overall effect of leprosy policy on those I worked with was to criminalise their main source of income and to deprive them of healthcare services that adequately met their needs.
Finally, given the focus on community based rehabilitation as the key to managing social aspects of leprosy, there are two issues relating to “rehabilitation” that also warrant consideration here. The first is that state- and NGO-sponsored microeconomic enterprises and other income generation schemes, despite some notable exceptions, are often ill-matched to the needs of those they are set up to serve. The people I worked with, for example, were offered training in such skills as soap, phenyl and picklemaking, and cigar rolling. Tobacco and food products made by leprosy affected people were in any case difficult to sell to a public who feared that they might contract the disease from consuming them, and there was already a wide range of branded products from multinational companies available in the area, at competitive prices. Blanket-training of these skills – to young villagers with college degrees as well as to older, more obviously leprosy affected people without formal education – further brought into question the validity of such projects. The idea that training, in itself, was always economically useful is another assumption that does not stand up to scrutiny.
The other point I want to make about rehabilitation concerns assumptions that underpin the current shift away from IBR to CBR. This shift is rooted, as van Dongen puts it, in the “modern obsession with autonomy and independence” (2001:406). In short, the universal value of CBR is assumed, promoted even though it might prevent the formation of communities with shared motivations to solve disabilities. The people I worked with patently did not want programmes that promoted economic selfhelp, something they achieved for themselves through begging. They wanted compensation for the social oppression they had endured.13 In addition, given that leprosy was, although not exclusively, a disease of the poor, the idea of maintaining the status quo during and after medical treatment was not necessarily something to be welcomed unequivocally. Many of the people I worked with supported institutional rather than community based rehabilitation because the former had a greater impact on the material conditions of their existence, and removed the necessity to conceal their disease from those around them.
Conclusion
The evidence I have presented suggests that the effects of contemporary state policy, locked into international responses to the disease, are insufficient – and in some cases counterproductive – in addressing the concerns of people affected by leprosy. There is a need to identify and then scrutinise the presuppositions relating to policies and practices on eradication targets, public education, CBR and skills-training for leprosy affected people.
The question that remains is how best the state can address the needs of people with leprosy. There are already stirrings in this direction. Both the Nippon Foundation and IDEA India, for example, have been vocal in their call for governments to address human rights issues in leprosy, and, in August 2004, the United Nations’ Sub-Commission on the Protection and Promotion of Human Rights reached a consensus to “take up the question of human rights violations inflicted on people affected by leprosy and their families”.14 This focus is to be welcomed, particularly if it addresses the state’s institutional role in reproducing oppression as well as addressing the violations perpetrated by individuals.
With leprosy as a disease-to-be-cured on the way out, cured but disabled people affected by leprosy are finite in number. They do not represent an indefinite drain on resources. This article has argued that the state, in considering the human rights of people affected by leprosy, should adopt policies that compensate for their social ostracism and ensure that it is not reproduced.
EPWEmail: js2@soas.ac.uk
Notes
1 Most recent statistics from the world Health Organisation’s Weekly
Epidemiological Record, 34,80, 289-296, August 26, 2005, www.who.int/
wer/2005/wer8035.pdf
2 See also press online press reports on http://www.indianexpress.com/
full_story.php?content_id=86942 and http://www.voanews.com/english/
2006-01-31-voa23.cfm.
3 For ethnographic background on my research, see Staples 2003a and b;
2004; and forthcoming.
4 Data from the World Health Organisation’s website www.who.int/health
topics/leprosy.htm and the WHO’s Weekly Epidemiological Record,
January 4, 2002, No 77.
5 A Congress of International Leprosy Associations concluded there was
no evidence that leprosy will die out at a predefined level of prevalence
rate, and that the statistics painted an overly rosy picture by western
countries where the prevalence rate is virtually zero. See the webpage
http://www.lepra.org.uk/review/june02/supplement/contents.html to
download a full copy of the Congress’ report, also published in Leprosy
Review 2002, 73, S3-S62. The Congress took place in February 25-28,
2002 in Paris, France.
Economic and Political Weekly February 3, 2007
6 A PDF file of ‘The Final Push Strategy to Eliminate Leprosy as a Public Health Problem’ can be downloaded from whqlibdoc.who.int/hq/2003/ WHO_CDS_CPE_CEE_2003.37.pdf
7 There are also contesting views on the value of leprosy education as a tool for tackling stigma. Gussow and Tracy (1970: 40), for example, argue that fear of the disease is more related to its proximity than to medical knowledge about the disease; similarly, a later study by Raju and Kopparty (1995: 264-279) found that less than 30 per cent of their Orissa sample in the “high knowledge” category also had a “high attitude level” towards those with leprosy; and Gokhale noted that “tribals do not know much about leprosy in medical terms and therefore in some respects they are less fearful of it” (1977, cited in Vidyakar 1983: 10).
8 See, for example, Barnes et al (1999:22-27), and Oliver (1990:4ff). 9 Current data accessed from the WHO representative to India website http://www.whoindia.org/CDS/CD/Leprosy/04-May/03-overview.htm.
10 The WHO reported its achievements in eliminating leprosy under the headline ‘Leprosy: Global Target Attained’. See, http://www.who.int/lep.
11 This is a theme I have pursued more thoroughly elsewhere [see Staples 2003b, 2004 and forthcoming].
12 As evidence that leprosy was once less feared than it became under the British, note the surgeon general to the Madras government’s comment that the “lower classes do not seem to have any special dread of associating with a leper, beyond that which might be due to his loathsome appearance” [Selections 1896: 29]; or that the Leprosy Commission that toured India in 1890-91 found: “That the native ordinarily does not fear the disease, may easily be gathered from the fact that in bazaars leprous vendors are not rarely found selling food or sweets” [Leprosy in India 1893: 265]. For further examples see Jackson (1901: 10) and Norman-Walker (1944: 41).
13 For discussion on disability as the consequence of social oppression rather than physical differences per se, see Oliver (1990; 1998), and Barnes et al 1999.
14 See http://www.ilep.org.uk/content/newsItem.cfm?NewsItemID= 46&SubMenuID=13&main=5
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