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Health, Democracy and Sickle-cell Anaemia in Kerala

A study conducted of the sickle-cell anaemia patients among the Chettys in Wayanad district of Kerala exposes the failure of public action in healthcare. It emphasises the need for sustainable care of these patients, which can be made available only if panchayats take an active interest. But the sick get less support from the panchayats and mainstream political parties. This is also a reflection of the present crisis in the public healthcare system of Kerala, which is characterised by poor quality and falling utilisation rates.

COMMENTARYEconomic & Political Weekly EPW november 8, 200825Health, Democracy and Sickle-cell Anaemia in KeralaJ Devika, A K RajasreeA study conducted of the sickle-cell anaemia patients among the Chettys in Wayanad district of Kerala exposes the failure of public action in healthcare. It emphasises the need for sustainable care of these patients, which can be made available only if panchayats take an active interest. But the sick get less support from the panchayats and mainstream political parties. This is also a reflection of the present crisis in the public healthcare system of Kerala, which is characterised by poor quality and falling utilisation rates.Among the many explanations of social development in Kerala, those that highlight the efficacy of “public action” have been popular. Public action, as Amartya Sen has elaborated, refers to people’s efforts to demand action and make governments accountable. The gains from such activism, for example, were evident in Kerala’s equitable and accessible public healthcare system. How-ever, it may be important to understand how public action undergoes transforma-tion as the fields of politics and development experiences fundamental change. A host of changes have led to significant shifts in the fields of politics and development in Kerala since the 1990s, which includes the realignment of class relations and com-munity power, evident in the economic clout of a new globalised non-resident Malayalee capitalist class, the emergence of the consumer-citizen, and the neoliber-alisation of the mainstream left. State welfare is now highly individualised and is focused on minimum entitlements defined from above. In this context, one may ask about contemporary public action in Kerala, specifically about its location and conditions which enable it. We hope to raise this question here through examining the recent efforts led by members of the Chetty community to organise around sickle-cell anaemia by forming the Sickle-Cell Anaemia Patients’ Association (SCAPA) in 2006, in the northern district of Wayanad in Kerala. Sickle-cell anaemia in the hilly, forested, and once-malarial Wayanad district is prevalent among two social groups – the tribal peoples, particularly the Paniyas and the Kattunaykans, and the Wayanadan Chettys, a small agricultural caste group, classified among the other backward castes. A fairly recent account of the latter classifies them as landholder-farmers, who engage in cash crop cultivation – of paddy, coffee, ginger and pepper [Ravindranath 2002]. It also mentions that the Chettys, while not a powerful group, do seek modern education and healthcare, and use public services, especially family planning services, extensively (ibid: 1574). A recent study on agrarian distress in Wayanad notes that though members of theChettycommunity do hold land rang-ing from 20 cents to five acres and above, they have not acquiredmuchabove their ancestral property [Nair et al 2007].The ongoing agrarian crisis in Wayanad is indeed the broader context in which sickle-cell anaemia is perceived as a debilitating disease for the individual sufferer, the family and the community. Wayanad has been ravaged by the com-binedeffectsof fall in agricultural prices, ecologicaldestruction and crop failure since the early years of this century, leading to an upswing in suicides by in-debted farmers. Several studies of recent agrarian distress in Kerala have indicated a general fall in the standards of life in urban farming households, and rise in livelihood risks [Nair et al 2007; Nair and Menon2007],and this seems to apply well to the Chettys.We conducted in-depth interviews and focus group discussions with key individuals involved in the formation of the recent SCAPA in Wayanad, between February 2007 and February 2008, and also inter-acted recently with social activists and healthcare professionals involved in the ongoing effort to strengthen public health-care facilities for detection and treatment of the disease. This group, of some 20 activists, is better educated and with fairly good exposure to public life, and interacts with a fairly large group of Chetty and tribal people, who frequently approach them for advice and help. The Wayanadan ChettysModern community-formation in early 20th century Kerala shaped new axes of social power, in which powerful commu-nities, which acquired modern education and had economic clout were able to exert considerable pressure on the government to extend social development from the early to mid-20th century [Jeffrey 2003]. Early 20th century accounts of the Chettyindicate that they had sought education but were lax about strengthen-ing their economic power. C Gopalan Nair, These interviews were conducted as part of our research on “Gendering Governance or Governing Women? Politics, Patriarchy, and Democratic Decentralisation in Kerala”, at the Centre for Development Studies, funded by the IDRC. We also wish to thank the audience at the Centre for Social Medicine and Community Health, JNU, New Delhi, where an earlier version of this paper was presented, for useful discussions.J Devika (devika@cds.ac.in) is with the Centre for Development Studies, Thiruvananthapuram. A K Rajasree (akrajasree@gmail.com) is an independent researcher and feminist lawyer active in the Human Rights Law Network, based in Alappuzha.
COMMENTARYEconomic & Political Weekly EPW november 8, 200827writing on Wayanad in 1911, writes thus about them: The majority is illiterate but they are now sending their children to school. They are law-abiding and peaceful citizens living on the produce of their lands but are im-provident and always indebted to the clever Moplah moneylender of Sultan’s Battery…[Nair 1911/2000]. Unlike Kerala’s powerful communities, the Chettys remain divided; subgroups mentioned by authors in the early 20th century continue to exist (ibid: 50-57). Unification efforts, while not absent, remain unsuccessful. Ravindranath (2002) mentions the existence of a Wayanadan Chetty Service Society, and our inter-viewees have mentioned about their recent efforts to strengthen the community through alliances with powerful castes. In thelate 1990s, a group of educated Wayanadan Chettys apparently approached the power-ful Shetty community of Mangalore and a large meeting of the Chettys was organised at Panamaram, Wayanad, which was attended by representatives of the latter group. However, that initiative did not prosper. Soon, a Chetty Welfare Society was started with the view of offering smallloans to members of the community and encouraging small deposits. This too became defunct. As small farmers, this group seems to have borne the full brunt of the crisis, and the drying up of their incomes led to the closure of the bank. Early accounts of the Chettys claim that in contrast to their east-coast counter-parts, the Wayanadan Chettys enjoyed privileges similar to upper caste Nairs and non-polluting caste-status in pre-British Malabar and under colonial rule [ibid: 55-57;Innes 1908/1997: 123-24]. However, present self-perceptions of the Chettys about their place in the caste hierarchy are different,despite frequent references to “bettertimes” in the past in the interviews. A key activist of the SCAPA even remem-bered being teased at school for being a Chetty; she claimed that though this is infrequent now, …we are not a powerful group. I would say that there are no people more simple than us Chettys … we are not thought of as very important by anyone. There are very few of us who have gained really high education and employment, or made money by going to the Gulf. This probably explains the “things-fall-apart” scenario that surfaced in our inter-views with sickle-cell anaemia patients from the Chettys. They connected their illness to the extraordinarily bleak present in which the community was being reduced to “beggary”. The president of SCAPA told us: ... I had 2 acres and 88 cents of land. I have had to sell it, portion by portion, to treat this disease. Now I have just 40 cents … and debt so big that it cannot be repaid even if I had five acres to sell. Such sense of doom was absent in the narratives of illness by Paniyas and Kattunaykans, whose recent history has been one of continuous loss. Their accounts of the experience of illness were about how the disease trapped them in a vicious cycle of hunger and inability to labour. The Chetty interviewees interpreted this response as following from their being largely “simple folk”. On the one hand, historically, the Chettys do not seem to have acquired the capabilities to diversify their income sources under economic distress; on the other hand, such strategies are made increasingly difficult now precisely because the higher survivor rates among sickle-cell patients in the community mean that there is high demand for caregiving besides escalating costs of treatment, in a context in which the joint family system has ended. This means that a much higher share of time and energy, for families affected with the sickle-cell disease, will have to be spent on caregiv-ing and not on finding sources of income other than agriculture. Among the leading activists ofSCAPA, there are a few who have attained relatively better education and secured better chances of employment, who are severely limited by their illness. Indeed, researchers have found that of all the groups among which the sickle-cellgene has been found in India, the WayanadanChettys record the highest frequency[Feroze and Aravindan 2004].Counter-PublicTheSCAPA activists talked about the “com-munity” and, importantly, located their initiative outside the state and politics, though many of them had individual affili-ations to political parties. They spoke of the flimsiness of membership in the political public in the face of illness – some of the office-bearers are communist sympathis-ers, who, however, remarked that once the disease struck, they were forgotten. This experience of isolation was highlighted when they tried to explain why they did not expect much from political parties. However, rather than retreat into closed communities, the activists seemed inter-ested in transforming themselves into a counter-public. Perhaps, this is why local political parties appeared suspicious of theSCAPA. It is important, however, that the formation of this counter-public does not mean that community affiliations have been fully unhinged. Most importantly, the Chettys and tribals appear to be linked in a persisting moral economy that pre-dates the coming of the settlers. The history of development in tribal areas like Wayanad and Attappady are stories of tribal deprivation growing with govern-mental interventions [George and Krishnan 2006]. These have provided the conditions under which other forms of governance – in this instance, represented by Hindu mis-sionaries – began to incorporate the de-prived. The Swami Vivekananda Medical Mission at Muttil, in collaboration with the Department of Genetics, All India Institute of Medical Sciences, New Delhi, claims to have screened 60,980 persons and found 1,838 persons affected with anaemia and 8,228 persons with the sickle-cell trait (http://svmm.org/specialclinics.html). Both the web site and the annual report of the Medical Mission portray it as a “tribal dis-ease” though public health researchers have been clearly aware of its prevalence among the non-tribal Wayanadan Chetty population [Feroze and Aravindan 2001]. This is despite the well-known fact that the sickle-cell trait is a human genetic adapta-tion in areas, where malaria has been known to be endemic. The Medical Mission hospital has been the major agency offering care for the disease until recently. Treat-ment was free for tribals but not so for non-tribals. The Chetty activists expressed their ire at this, and felt that this was part of the Medical Mission’s effort to Hinduise tribal people in Wayanad. But the perception of such denial does not seem to be converting into resentment against the tribal peoples. We seem to bewitnessing, partly, the shaping of a biosocial community and counter-public
COMMENTARYnovember 8, 2008 EPW Economic & Political Weekly28[Rabinow 1996], one with claims of the capability to transform existing govern-mental categories and possessing exclusive knowledge of living with the disease, which, however, only blurs, not obliterates, local social boundaries.Researchers have noted that the Paniya tribal people were once bonded labourers to Chetty landowners. The lack of resent-ment noted above is probably related to the persisting “moral economy”: Chetty land-owners who had abandoned rice-farming in 2000 “reciprocated positively to the plea of the Paniya and Naykan households for sharecropping their land” [Nair et al 2007]. Both groups share deep distrust of settlers – our interviewees persistently constructed a shared history of loss. Feroze and Aravindan (2004) observe that higher the access to social development, the better the chances are for sickle-cell patients to sur-vive. The times indicated in these accounts, three generations back, may have been the pre-health transition period which may have masked the prevalence of sickle-cell anaemia in both Chetty and tribal people. In this case, this shared history of loss seems to work in such a way that those social rela-tions that structure “insider-outsider” rela-tions work against producing stigma. Stigma, especially of disease, has been identified as such relations that lead to the identification of the “outsider” as undesirable or dangerous [Takahashi 1998]. In this account, it is the “outsider” implied who is held guilty – the settler from the plains. No wonder that the sense of“we”,when it appears in the speech of our interviewees, seemed to refer at timesto the Chetty, and at other times, to a new community of sickle-cell anaemia patients, taking shape across blurred community boundaries.Community DemandsNot surprisingly, then, the demands of the SCAPA go well beyond better healthcare fa-cilities into “community demands”. They include reservation in educational institu-tions for sickle-cell anaemia-affected chil-dren and children of such parents, reserva-tion of government jobs and debt relief, be-sides the expansion of public facilities for detection and treatment. Each of these de-mands is justified by the activists as neces-sary to achieve relief from and control of the disease. The secretary of SCAPA argued that all children who have sickle-cell anae-mia deserve reservation in educational in-stitutions since they are more likely to drop out because schools are often far away and hunger is now endemic in Wayanad. This, she pointed out, affects awareness creation. Reservation in government services is de-manded as support for those who cannot do exhausting physical labour. The activists argued that debt makes it impossible for families to attend to the health needs of members who are patients. It is indeed striking that these demands – the weakness induced by the disease on the individual body, and the weaknesses suffered by the community in its failure to transform itself into a unified and economi-cally powerful interest group – immediately refer to each other. Sickle-cell anaemia works here as an elaborate metaphor ex-pressing the contemporary experience of the community: as a SCAPA activist elo-quently remarked, what had been a benefi-cial genetic adaptation became a terrible drain to the Chettys; social development that ensured entry into citizenship to all others had paradoxical results for them. This may resemble the history of sickle-cell anaemia patients’ activism in the US, where the disease was read as a metaphor for the historical experience of the African- American community [Tapper 1995]. But as mentioned earlier, in the activists’ narra-tives, the “community” referred to keeps shifting between the Chettys and the emer-gent biosocial community. Also, the bioso-cial community seems to hold out the pros-pect of transforming the way in which gov-ernmental categories are inhabited. The activists argue that they are for the inclu-sion of sickle-cell among “disabled per-sons”, a well-accepted governmental cate-gory, which, they feel, may be transformed into a platform to put pressure on the state.Contrasting ApproachesThe contrast between the manner in which the state and public health authorities, and the members of the SCAPA approach the dis-ease is best evident in their observations on the Comprehensive Care for Sickle-Cell Anaemia Patients in Wayanad and Attappady (CcSCWA), an extensive project aimed at im-proving the facilities for detection and treat-ment of the disease in district and primary level hospitals in Wayanad and Attappady. Through the project, now supported by the National Rural Health Mission, facilities for detection are being set up in district hospitals and primary health centres; drugs effective in controlling infections and other manifesta-tions are being distributed; doctors and para-medical personnel are being trained to han-dle sickle-cell anaemia; screening activities are being conducted and a database is being built at the Calicut Medical College which is supervising its implementation. Interestingly, both the members of the SCAPA and the doctors involved in plan-ning and implementing the project regard it as the fruit of their labour. The medical researchers from Calicut Medical College consider the project to be an outcome of their efforts; the activists regard it as the government’s response to their agitation for better facilities in the public sector, since 2005. They spoke of the dharna they had organised in front of the secretariat of sickle-cell sufferers – mainly children – to make their plight public in February 2006 (Indian Express, Kochi, February 2, 2006) and of their petition to the chief minister of Kerala, who announced financial aid of Rs 20,000 to each affected person. This was not a solution, though it en-couraged many people to undergo screen-ing. An office-bearer of the SCAPA re-marked that they had evinced keen interest in this project but they were granted no creative role in it. The complaints raised were not against the project per se, but that the given frame renders the sickle-cell anaemia sufferer passive. Here, the SCAPA’s sociological understanding of the disease stands in sharp contrast with the epidemiological view. Also, public health-care was valued also because “government doctors” were rated as “patient, concerned, and kind”. However, they insisted that doctors did not have the knowledge they possessed – of the experience of living with the disease, which they consider to be equally important. Women members stressed that for women, sickle-cell anaemia poseda wholly different set of anxieties, which may be alleviated only by women health-care professionals. Besides, the SCAPA members also seek to position themselves as active citizens medi-ating between the state/public health autho-rities and the masses. A SCAPA member cited a recent instance in which a teenager,

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