By Deben Bachaspatimayum
Access to essential healthcare services and social supports continues to be serious issues for PLHIV in the state while during the same time complexities of the problem and its inter-generational ramifications in the general population also continue to deepen beyond any local capacities to grapple. The state Govt even after seeing uncounted numbers of untimely deaths of youthful population and untold miseries of a section of society infected and affected by, and also after knowing well the serious socio-economic implications of HIV in the population, does not seem to accord the priority it deserves in the healthcare services. HIV and AIDS programming in the state under NACO through several 5-yearly phases which finally aimed at Halting and Reversing HIV (NACP-III: 2006-2011) have crossed over the finish line 2 years back without scoring the goal it wanted to hit in the state. While Targeted Intervention (TI) programs continue to pursue the issue to its finer specificities the supplies of essential medicines and services continue to be either irregular or far cry. Access to treatment for HCV still the worse, even when, HCV positive among sample population of PLHIV/PUD is reported to be as high as 92 to 95% (CoNE/Jan 2014). Why is the HIV programming in the state not performing to the level it is expected to perform and achieve results?
Who does the problems of HIV / HCV actually belong to, anyway? Who does the issue actually affect directly? Who ought to be actually taking the responsibilities of addressing the problems? What is wrong in the programming? While there may be several answers to these questions two experiences; one in Thailand, at a country level and another at tribe level seem to provide some hints to these questions.
Why things work elsewhere?
In Thailand, HIV is reported to be officially recognized as social issue requiring emergency measures than treating it as individual health issue like in India. And in the case of a small tribe like Chakheshang, HIV seems to be recognized a ‘threat to the survival of the tribe’ at the community level rather treating them wayward behaviour and characters of soiled youths like in Manipur. The responses, in both the cases, have also been serious, concerted and consistent. Govt of Thailand is reported to be providing all necessary essential medical and health services without having to ask for by the affected the people and in the case of small tribe, the whole of the community own the issue as ‘community issue’ and responded collectively as a community involving all sections of society. Stigma and discrimination became no more an issue for infected and affected persons rather they were given the care, comfort, support and nourishments they needed, as much. The issue of ‘confidentiality’ found its relevance only at the inter-community level not within or at the individual level as each of them were identified for collective care at family and community levels.
HIV considered as ‘social issue’ in Thailand, and as a ‘survival issue’ at a small tribe level were critical to effective management and appropriate responses it deserved. Chakheshang tribe was able to achieve the goals of NACP-III well before the 5 years phase ended while in Thailand the Govt provided all essential healthcare and social services without PLHIV having to go to legal Court or running pillar to post. Taking these models as diagnostic yardsticks for the perspectives and programming on the issues of HIV in India in general and the state of Manipur as one of the high prevalent states, in particular, may help find some answers to the questions above. This paper attempts to examine how HIV is perceived, located and approached to understand the existing programming responses in the state. Five predominant perspectives; Medical and Anthropological as two subject disciplines, Constitutional paradigm as the site of reference for the rights of an individual, Societal, Governmental/ Health system as the interconnected space which determines the health of a person, are considered to assess the level of priority, location of HIV issue in a sociopolitical space and analyse the healthcare responses. This paper also risks, based on the analysis, to consider options for re-designing response to the issue.
Locating the issues: Anthropology and Medical science
Anthropology locates a person in a family which is a reproductive unit of a lineage, a clan, a tribe, a religious community and a society, irrespective of his /her sex or health status. S/he is primarily a member of a family and society with age specific roles, status and responsibilities in the continuum of lineage and descent through a cycle of reproduction, transmission of culture and identity in a kinship based society. HIV status does not annul these roles and responsibilities. Medical science, locates HIV in a person isolated from the kinship system and society within which s/he lives and studies how and where the disease affects the parts of the body and mind of the person. Medical science has found out that a person infected with HIV may invariably suffer from AIDS or a state of defenceless health condition of the body to which all kinds of diseases may easily lead to premature death of a person, sooner than later. Further, HIV, being blood born disease, can be transmitted to another person through unsafe blood and sexual contacts between persons, silently. Life of an infected person can be extended to live longer only with life style change, and availability of and accessibility to healthcare support system. There is no cure for HIV and AIDS. While the research for a cure is going on medical science has also developed medicines that can weaken the potency of HIV and keep them under control inside the body to minimize chances of transmission. This again is possible only when the health system is geared up to provide all the essential healthcare needs and nutritional care and supports to PLHIV.
The discovery of and knowledge generated about HIV; its nature of spread and lethality to another person from Medical sciences, and the general social characterization of person infected with HIV (as Drug addicts) came as direct attack to the anthropology of a person living with HIV. Quick as reflexive action, as any living body would defend itself from any external attack, the person identified as HIV positive was rejected and thrown out of the family, kinship and society – stigmatized and discriminated. There was no return from them – separated from the family and isolated in the society. But the survival instinct of the HIV positive person with the dignity to preserve from degradation also began to either remained ignorant of or deliberately hide his/her HIV status to live another day till s/he faced the death. For the medical science HIV is an emergency public health issue and it must be and urgently so important to identify persons living with HIV among all in the high risk groups to protect the population from scourge of HIV. And it was the duty of the Health System to deliver all the needed healthcare services and supports essential for all the HIV positive persons in the population, adequately, acceptably, appropriately and timely. The focus of the both; Medical science and Health System is on the person/ individual in isolation from his family, clan and community.
The identification of HIV positive person in the population by Medical science, in response the isolation of such person by the family/society resulting into self-imposed resistance against disclosure of HIV status by the persons living with HIV and the entire efforts for care and treatment programs exclusively targeting them (TI programs) who did not want to targeted /identified /disclose, seemed to have collectively increased the opportunities for further spread/transmission of HIV silently and swiftly among the general population from IDUs to sexual partners, and then to children from the mothers. Reducing prevalence among the IDUs (from 80% to 20%) and increasing prevalence among general populations (7000plus positive women and 2000 positive children, appx. In the state) glaringly hints at collective failure in approach to the issue.
Is HIV an opportunity for neoliberal economy?
The issues of HIV and AIDS, despite, the high prevalence and silent lethality in the population has not been declared as “Public Health Emergency” in the state by the Government over the two decades of programming. On the contrary, the recorded stories of corruption in the concerned department tasked to address the issue in the state shows level of serious accorded by the consecutive elected Government that represent the issues of the people in the state! Given the situation of human rights crisis for the PLHIV, the international community began to intervene from the highest level through the Millennium Development Goals (MDG) including HIV and AIDS as priority issue and the policies like Greater Involvement of People living with HIV and AIDS (GIPA) for inclusive programming. In the context of increasing awareness of human rights, the State armed with the Constitutional provisions for Fundamental Rights for Citizens intervened to make non-disclosure or person(s) hiding HIV status or “Confidentiality” (without his/her consent) as legal right of the individual PLHIV to protect from social stigma and discrimination that are intended to diminish his/her right to equality and dignity.
Hence, PLHIV be must be protected from the society to which he belongs. It is rightful and legal not to disclose of HIV status to fight against social stigma and discrimination. In order words, the natural mechanism of self protection for a social body (family or kin-group or a society) against external attack by the acts of stigma and discrimination – became illegal and so punishable act.
What logically and probably follows from the above observations and analysis in the way HIV does to the human body immune system on one hand may also be the same in the way the State does to the family/society, on the other. Both are deliberately aimed at destroying any natural protective mechanism or system or actions of a living body or social body or solidarity of traditional community to ensure dismemberment of any traditional/ natural body constitutions into dependent parts or smaller units drawing survival resources only from the State’s system, institutions and service facilities. The state, therefore, owns the onus of and responsibilities for providing all the basic services and sustenance to all it’s people who it has deliberately dismembered into pieces and made dependent to it. The state is duty bound to serve equally with dignity that everyone deserves without any discrimination. This also goes to say that the state cannot shirk, even an inch, from its bounden duty to serve the people on moral ground. The state has no any right to or moral ground for withdrawing from its social and economic welfare duty and services. The whole policy and programs for liberalization and privatization of the state’s social services are sinful act of the State as it will kill many of its poor citizens who would have money to secure basic needs including essential healthcare. It must be withdrawn at the national level. But the situation is even more serious for the state of Manipur. Here, poor people are dying everyday even without the impacts of liberalization and privatization!
Is Manipur state suffering from HIV and AIDS?
Manipur state seems to seriously suffering from multiple disorders or at best multiple organ failure. The state is already surviving at 90% dependent on Central grant funding for the last 50 years and more. There is no sign of reviving in the body polity of the society. It seems to have already been moved into ICCU surviving on life support system under heavy security arrangements. The state is not even responding to any sounds of cries and yells of its people. The Central Government in its efforts to protect and save the life of the state has been doing everything it can, even when it knows much money, manpower and resources are going in the waste, by increasing annual budgets against growing debts and serious lack of any accountability, besides, by spending crores of Rupees in security arrangements for the state and unaccounted security related expenses. It is doing everything. Thanks to the Central Govt for keeping the state Govt of Manipur and Sharmila alive under life support system. For such a state how can HIV be any emergency public health issue when the state itself is already in the ICCU! One can only have mercy even when it is being run by the most stable form of elected Government with one party winning all time record absolute majority! When such is the critical condition of the state can its departments, the health in particular, do anything sensible to protect the population from HIV and AIDS? The whole of the State and its population is actually in an extraordinary situation where all the organs of the Govt seem to be laying on in an abnormal /paralytic functional status. Manipur is politically dying on daily basis and it is dying because the state is a stem-graft which had no any historical roots. The state machinery –a European construct, artificial – is also leftover of the colonial masters, which has already become obsolete, worn and overused, dead structures. It is not indigenous to the soils of the place where it was implanted. Options are increasingly hard to find in the inorganic /dead system called the state in Manipur. So, what are alternative options? Yes, the Organic systems!
It is survival: Declare HIV and AIDS as Health emergency
Declare HIV and AIDS as Health emergency any organic system or the traditional social system will respond as it did by way of stigmatizing and discriminating resulting into isolation of a HIV positive member at the family/society level and hiding status at the individual levels. These actions are all automatic response to conserve and protect a living body (social or individual) from any harmful external attacks that are life threatening. The whole is larger than the part. For a part the whole cannot be sacrificed as the organic system has to grow and procreate generation to generation to continue. But both these responses at individual and group level have been mutually detrimental as it occurred within a protracted social and political conflict context in the existing State system. This can be turned to a situation of advantage if we allow the traditional system to mediate. Drawing from biological analogy, the immune system of the body should be strong enough to accommodate or absorbed or contain any living diseased or infected parts in the body. The body has a system to discard only the dead parts of the body not the living. This is what happened in the case of Chakheshang community. Infected persons as part of a society should be able to survive within the body of family and society without dislocating or isolating him/her. Once any living body sense a danger it triggers a series of mechanisms to protect itself without jeopardising the parts. Such mechanism can be found in our traditional social systems too at family and community levels once it recognizes a danger sign or an emergency situation. Terminally ill persons with other communicable diseases have always been cared in the family and community and also given the same honour when s/he dies in our society. Therefore, recognition of HIV and AIDS as health emergency at the where it directly affects is critical to recalling and reviving the traditional social mechanism to respond positively, rightfully and honourably. It is here, anthropological knowledge comes to help.
Recall and revive the traditional social system
Recalling and reviving the traditional social system as the only best option must be taken up zealously by any indigenous community in the face of threats from HIV and AIDS and the failing state system in delivering basic services to the people. A person under the Indian democratic state system is just a digital number (UID/Adhaar) or at best, a count in the voting machine. This system aspects every person to be self-responsible and reliant for his/her health and livelihood. Sick persons are increasingly becoming a liability for them as they have relinquished the social responsibilities for the Private profit-making companies. The situation of a sick person, especially HIV positive, who need essential healthcare most, in a state like Manipur where Govt is run by Contractors and Bureaucrats for their own personal or group interests rather than to address public issues, is the worst. But, just turn to the family and the lineage/clan (Sagei)/tribe to which a HIV positive person belongs, s/he has indispensable roles to play for which to be cared and to care others in the family. There is a natural bonding and solidarity in the group. A paradigm shift can happen here if we move HIV as an issue of a family which belong to a clan or a tribe from being targeted /focused as an individual problem (as has been projected by the Medical science and also by the State). Once, HIV is recognized as an issue or threat to the clan / tribe the traditional social body will take charge by owning it as its responsibility to care and support to prevent or protect from the threat. This traditional organic system and mechanisms must be harnessed fully to respond to the growing threats of HIV if indigenous populations have to survive. Help and supports which are beyond the family and traditional community will come from international communities of humanitarian /charitable services if we take our local responsibilities first of owning the issue and the person(s) instead of isolating him/her as unwanted waste or slur in the clan or family – sinful!
Why victimize the victims? Where is the perpetrator?
Persons who came to be infected with HIV are innocent. They did not invent the virus. They did not deliberately want to get infected. It happened in their ignorance in their drugging habits into which they were pushed to fall. No youth in Manipur deliberately brought huge consignment of drugs to drug the youth population in 1980s in the state when armed struggles began to rise. It happened as part of the game. Drug addicted youth in the state are also victims of sum total historical and political conflicts in the state. Perpetrators are others who had vested interests to slowly kill the politically active generation of youth in the state. Drug addicts and HIV positive persons were systematically dislocated from their families and society under the death weight of a dying colonial state system trying to survive in a Neoliberal economy. It cannot continue. Winds of change have gripped the heart of country and now a new genre of India is emerging as a true democratic country of the people by the people and for the people. While all these happen outside we cannot neglect our home works. There are much to re-gather, re-organise and to create a synergy for change.
Re-locating where they belonged and re-targeting programs
A society that is living alive in big numbers can never be uprooted and disappeared or its history buried by all might of the military or the worst of the Acts. New generation will spring back from historical roots so deeply grown inside the soil of this land. We shall survive only when we begin to relocate HIV positive into their original homes, families and clans. And all existing and available programming resources targeted to support the families/clans/tribes with HIV and AIDS in their efforts to respond to the issue for their self protection and survival. They will do it on their own in the most honourable manners without compromising international human rights standards.
PLHIV, thus far, have remained dislocated from their families and clans to isolate them and then to gather them as COMMUNITY for targeted intervention programming. Such targeted programming with the philosophy of HARM REDUCTION have been drugging the youths by imparting them safer skills. Of the tens and twenty thousands of youth who used drugs how many have come clean in the all these years compared to the number who have died? This may be easy guess for anyone! Such targeted programming has also not only successfully deprived family and clan members of their responsibility towards their sons but also dislocated the youths from home to the community – where they are made to seek all social and material supports. Their homes/ family have been reduced to a mere bed room where he comes to eat and sleep only and no more a place for care and nurture of parents and family members. These programs must be redesigned to resources retargeted to the families, clans and tribes where targeted youth originally belong. If home or family or the community or society is where the problem is solution must also be found there not more outside of it in the COMMUNITIES of targeted people which has no social and cultural basis in the traditional culture and society. Dislocation of the issue and programming deliberated created space like community has also distorted the very sociological meaning of the term. Originally, a community is defined of group of people living in specific geographical area but the terms has been uprooted from the geographical space it is now increasing understood as a space where few people with common experiences come together. Let us stop this process of up-rooting, disorganizing and dismantling our traditional culture and society. NGOs can do a better job by making a paradigm shift is this direction as they are the only ones that work where Govt fails.
(Deben Bachaspatimayum is a peace and research consultant based in Imphal.)