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
ndia carries the dubious distinction of being home to the
world’s largest number of leprosy affected people. Despite
a substantial decrease in the number of reported cases over
the past few years, the World Health Organisation’s (WHO)
figures show that 1,48,910 people, or 1.4 for every 10,000
members of the population, were still registered for leprosy
treatment at the beginning of 2005.1 A further 10.8 million plus
cases have already been cured [Rafei 2003:2]. The Indian govern-
ment deals with its leprosy situation in line with an international
strategy to eradicate the disease as a public health problem,
through the National Leprosy Eradication Programme (NLEP).
Having missed the previous global elimination deadline of Janu-
ary 2000, the WHO gave India an extension until the end of 2005.
And on January 31, 2006, India’s press declared that the target
had finally been reached: with a new national prevalence rate
of 0.95 cases per 10,000 members of the population, India had
achieved the “globally accepted level of elimination” (The Hindu,
January 31, 2006).2 Welcome though this is, the WHO’s redefi-
nition of the term “elimination” – to signify a prevalence rate
of less than one case per 10,000 people rather than, as a dictionary
definition might suggest, to have got rid of leprosy altogether
– invites further scrutiny. Such scrutiny reveals a number of
concerns with this internationally shaped approach towards leprosy
control that still remain under-explored.
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 prac-
tical 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 in-
volved 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 legis-
lation on leprosy – both as written statute and legal practices
– in order to draw out some of the main contradictions between
the law as it stands and the aims of the NLEP. Having observed
the ways in which official policy appears – despite its stated
intentions – to uphold stigma against leprosy affected people as
much as to counter it, I will turn to look at the narratives of leprosy
affected people themselves.
In so doing, it is not my intention to herald a victims’ discourse
in favour of state rhetoric. The former is constructed in direct
relation to the latter and so neither perspective, taken in isolation,
offers satisfactory solutions to the problems either have iden-
tified. However, the voices of an older generation of deformed
leprosy affected people are largely missing in the contemporary
discourse on leprosy. Current policy on leprosy tends to consign
this group eternally to the sidelines and, as a consequence,
diminishes still further their capacity – and arguably, their right
– to engage fully in social life.
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 gov-
ernment as a health problem with the launch of its National
Leprosy Control Programme (NLCP) back in 1954-55. This

Economic and Political Weekly February 3, 2007 437

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 2004:71-
72]. 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 activi-
ties. 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 super-
visors, 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 re-
habilitation – that is, leprosy colonies – were outdated [Gopal
1999: xi]. With modern drug therapy, leprosy is rendered non-
contagious within days of the commencement of treatment,
eliminating any medical necessity for patients to be segregated
from their communities. The idea of community-based rehabili-
tation (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
438
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 socio-
economic 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
Economic and Political Weekly February 3, 2007
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 institu-
tional 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 com-
mitment 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
– to ensure social rehabilitation of disabled leprosy patients.9
In summary, leprosy policy in India – while never monolithic
– has always been framed by an international health agenda. The
focus has been overwhelmingly on “elimination” and, therefore,
on those diagnosed with the disease and needing treatment rather
than those cured of but disabled by leprosy. Ways of dealing
with leprosy prevalence have been dealt with, chronologically,
by segregation – policy at the end of the 19th century (as enshrined
in the Lepers Act 1898); by treatment in patients’ own homes
and CBR; and, finally, by integrating leprosy care into the general
medical care system. Social consequences of the disease have
been met with SER programmes from NGOs, and by ongoing
public education aimed at hammering home the “leprosy is
curable” message. I will come back to examine critically the
presuppositions that underpin official policy shortly. First,
however, it is important to get an idea of how that policy is
translated in action on the ground.
Policy in Practice
Given that both the government and the larger agencies in-
creasingly 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].
Economic and Political Weekly February 3, 2007
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 ex-
ample – 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 in-
tegrated 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
439
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-eradi-
cation 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 – subse-
quently 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 re-
mains 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
440
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 chan-
nelling resources would start to disappear alongside the availa-
bility 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 disappear-
ance 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 reser-
vations 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
Economic and Political Weekly February 3, 2007
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’ dis-
course” 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 inter-
national policy and national socio-economic concerns. Within
this rubric, cured leprosy affected people will always be periph-
eral 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
Economic and Political Weekly February 3, 2007
targets also encourage a focus on areas where the highest con-
centrations 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 leprosy-
as-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 leprosy-
as-curse and “traditional” ideas as opposed to “modern” ideas
of leprosy-as-medical-condition, suggests an underlying accep-
tance of an Enlightenment doctrine of progress from primitive
to modern thought. Such a trajectory, however, is under-
determined 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 belat-
edly 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
441
leprosy affected people are stigmatised. The recent “India Shin-
ing” 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 identi-
fied 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 af-
fected 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 un-
welcome 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 pickle-
making, 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
442
motivations to solve disabilities. The people I worked with
patently did not want programmes that promoted economic self-
help, 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 counter-
productive – 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. EPW
Email: 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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