Health Movement and Civil Society Activism: An Interface of Overlap and Exclusion

Introduction

The era of globalization that began towards the late 1980s has been considered as an epitome of change in the social, economic, cultural and political field. In India, both the arena of mainstream politics and subaltern politics (generally captured by social movements and politically active civil society) received new challenges and opportunities. Globalization has been perceived as either positive or negative or a force that combines both. ² In the era of globalization, civil society activism and social movements got new opportunities to expand socio-political advocacy. Several exogenous factors led to the integration of civil society organizations (CSOs) at international level as well as at the national level, and have inspired CSOs to work in unison on several issues including health. ³ In the late 1980s, many international conferences, such as the Vienna Conference 1993, the Cairo conference 1994 and the Beijing Conference 1995, influenced the local-level CSOs in two ways—one, they strengthened the already existing movements and activism on several health issues. Second, they provided impetus for the emergence of the new movements, such as People’s Health Movement (PHM) that began in the year 2000.

In the late 1980s, the human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) emerged as a new health and developmental challenge in India. In order to tackle the issue, the Indian state has been making several policies and taking institutional and financial measures. The Indian state, having control over most resources, such as funds, personnel and administration, and being a crucial actor in guaranteeing rights of its citizens, has not been fully successful in ensuring health rights of people. The state governments in India have followed a myopic approach that has accorded priority to the medical perspective while neglecting the socio-economic rights of HIV positive people. Such an approach has resulted in their failure in assuring rights to HIV positive persons. There are also incidents of widespread discrimination, treatment denial and negligence in hospitals across the country and outside. ⁴ There are cases where women have been thrown out of their homes without being guaranteed any rights over property. The state has not taken enough steps to address these issues. The failure of the state, partial or full, calls for intervention by the civil society and health movements to redress rights violations and to act as protagonist of the needs and rights of the HIV positive people (Sahu, 2012).

Civil society organizations while playing a politically active role sometimes support health movements. There may be incidences when CSOs or movements initiate an alternative health discourse or demand an alternative policy framework in the belief that people’s health rights could be ensured in a better way. At times, these two forces, that is, CSOs and health movements come together, and their activities overlap. Although these groups are different in their nature, approach, strategies and so on, there may be some commonalities among them. Therefore, it is pertinent to understand the area of overlap and exclusion created by the interaction of health movements and CSOs. Moreover, it is equally vital to analyze the implications of the overlap and exclusion and the nature of exclusion and overlap which affect the strength of the movement on health.

The overlap on the one hand can be an indication of the strong advocacy on health. Exclusion of the two socio-political forces on the other hand reflects on weak activism and also highlights the diverse nature of these two groups. Moreover, when two different groups, having their own strengths and weakness, work together, they have the potential to emerge as a better advocacy body together. Health movement having a wide presence when interacts with CSOs, it gains the grassroots-based experience of health issues and tends to set a better health discourse. ⁵ Socio-political movements can potentially lead to a more vibrant democracy, as these movements act both as a check on the political realm and also civil society can draw their vibrancy from these movements (Yadav & Palshikar, 2009). The joint effort of movements and CSOs’ intervention has the potential of influencing the policy formulation and implementation in a better manner. Currently, HIV/AIDS has emerged as an epidemic. People living with HIV experience stigma and discrimination in several spheres of their life, and more importantly face difficulty in accessing health care. In such a case, if both movement- and CSO-led activism as a collective addresses the health issue effectively, there is greater chance that people’s health rights, and particularly HIV positive people’s health rights, can be protected better.

The article discusses movement- and CSO-led advocacy on health in India. It also analyzes the possibility of convergence and divergence between civil society and health movement and in the process, it further highlights the barriers towards strong health movement.

Methodology

The state of Karnataka is selected as it is one of the high-risk states (National AIDS Control Organisation [NACO], 2007 [2008]). Civil society is active on health issues in the state as the state has a history of active civil society participation for HIV. ⁶ Therefore, the role of CSOs in addressing health issues of HIV positive people is analyzed. A few activists and organizations in the state, which initiated and joined the ‘health for all movement’, have been addressing several health issues including HIV/AIDS; hence, the presence of health movement in the state is discussed in the article.

This article focuses on the involvement of CSOs-led activism on HIV/AIDS. For the selection of organizations, first, a list of all CSOs of the state is prepared. Then, five organizations (Karnataka Network of Positive People [KNP+], Community Health Cell [CHC], Arunodoya, Lawyers’ Collective and Milana) from the state are selected through a simple random sampling method. Data and related information have been collected from five organizations which are engaged in advocacy relating to HIV/AIDS. The heads of the selected organizations, programme mangers as well as grassroots workers of the CSOs were interviewed. A few key informants were also interviewed. Questions were posed to understand the organizations’ structure, function, coverage and strategy, level of work and rights issues raised by the organizations. In total, from all the selected CSOs, 20 people including the director, the project head/key informants and grassroots-based workers were interviewed through an in-depth interview method.

To understand health movements and women’s movements, in addition to the selected organizations, we interviewed the head or a concerned person of the organizations, such as Vimochana, and members of All-India Drugs Action Network (AIDAN), like Dr C.P. Prakash, and Voluntary Health Association of India, in Karnataka. In addition, discussions were also held with All-India Democratic Women’s Association (AIDWA) members in the state.

To analyze the national-level presence of the movement, apart from the view of the Karnataka- based activists, we held discussion with activists like Renu Khanna from Gujarat and members of Medico Friend Circle from Maharashtra. As far as selection of the individual activists was concerned, a snowball sampling was adopted.

Health Movements in India

Health movement is a part of the broader social movement. A social movement has been defined variously ⁷ by scholars and can be considered as an explicit or implicit effort by non-institutionalized or institutionalized groups seeking protection of rights and development by attempting to change or protest against change in the status. The origin of the health movement in India traces back to the 1970s, when a group of organizations and individuals started articulating health issues in India. The women’s movement acts as a protagonist of several women’s health issues (Chacko, 2001; Gandhi & Shah, 1993). During the 1970s, need for adequate availability of contraceptives being acute, several women’s organizations throughout the country demanded availability of reproductive health measures. ⁸ In the same decade, during the mid-1970s, the collective initiative of women’s organization, CSOs and individual initiatives took the shape of a health movement and mounted criticism against the Indian state for its coercive population policy (Chacko, 2001; Katzenstein, 1989). Since the 1980s, ⁹ the movement has been trying to influence state policy towards the promotion of safe contraceptive measures as against Net-en (Datta & Misra, 2000), Depo-Provera, quinacrine sterilizations (Rao, 2006; Viswanath, 2001), intrauterine devices (IUD), etc.

It was in the year 2000 that a united and prominent health movement came up in the name of Jana Swasthya Abhiyan (JSA) or Health for All movement. ¹⁰ The movement began as a protest against the Indian state for its failure to ensure health to all (Chandhoke, 2005). Several international organizations, CSOs, radical groups, individual activists and women’s groups decided to work together towards achieving the goal of health for all. It was an international initiative, and initially the movement in India was led by a Karnataka-based organization called CHC. The preamble of the movement mentions (charter for health) that health is a social, economic and political issue, and above all it is a fundamental human right. It was for the first time that the collective efforts by groups named their own activity as a health movement. As far as CSOs are concerned, as was evident from the primary study, All-India People’s Science Network (AIPSN), AIDAN, Asian Community Health Action Network (ACHAN), AIDWA, Bharat Gyan Vigyan Samiti (BGVS), Voluntary Health Association of India (VHAI), CHC and so on are members of JSA.

In India, the movement began to highlight the failure of the state towards protection of health rights. India, as a signatory of the Alma Ata Declaration, 1978, had promised to provide health for all, irrespective of class, caste or gender differences. The state, according to the movement, has failed in fulfilling its duty and assurance of health care and has actually deviated from its policy goal of health for all. There have been many maladies that are hindering the universal health provisioning in India. The health movement has targeted many such neglected areas of health including the failure of the state in strengthening primary health centres (PHCs) as an integrated health provisioning centre and failure in reducing gender gap in health and addressing HIV/AIDS as a major health challenge. It committed itself to work for the HIV/AIDS issue, with the special aim of ensuring the local authorities, national government and international agencies abide by their promises and actions.

In many instances, as mentioned above, the social movements and the CSOs played a complementary and supplementary role to each other. ¹¹ In some cases, the activism of CSOs indeed strengthened the ongoing health movements. Several CSOs working for health issues and particularly for women’s health issues joined the ongoing women’s movement; for example, Vimochana and Parivartan in Karnataka have joined the movement against female foeticide. As a result, several organizations that raised the issue of female foeticide, reproductive rights, proper use of technology and so on substantially added to the strength of women’s movement of the time. In the case of health movement, as is evident from the above discussion, some CSOs actively participated with the movement.

Civil Society Organizations and Activism on HIV/AIDS

There is civil society activism around a variety of issues including health (Deibert, 1997; Ford et al., 2009; Mathew, 1997). The ‘bottom-up’ pressures emanating from civil society activism highlight diverse health issues. A host of disease areas ranging from diarrhoeal disease to malnutrition and HIV/AIDS have been organized and financed better due to the positive influence of activism (Barnett & Whiteside, 1999). There is the indication of the influence of the civil society as one of the major drivers for ensuring adequate accessibility and availability of health care particularly in the field of the HIV/AIDS (Ford et al., 2009; Ndinda, 2011; Sridhar & Gomez, 2011). Civil society activism has also a greater role in enhancing or strengthening the campaign to create awareness and check the spread of AIDS in India, especially at the micro-level (Parikh, 2006). Civil society activism has helped better resource allocation in addressing health issues, such as HIV/AIDS, in India (Sridhar & Gomez, 2011). It is in this backdrop that we report the activities of the organizations under study here.

The selected organizations in Karnataka, while addressing the issue of HIV/AIDS worked at three different levels, such as social, administrative and at the policy level. They arranged rallies, fixed meetings with the ministers and organized public hearing at the policy levels. They mediated within the society, that is, within a household and community to ensure gender rights and finally they were engaged at the administrative level to reduce stigma, discrimination at the medicals/hospitals and in the process also intended to ensure accessibility of health care to HIV positive men and women. In the process, these CSOs tried targeting several socio-political power structures within the state. In order to ensure rights of HIV positive people, some of the advocacy organizations, such as Lawyers’ Collective and Human Rights Law Network, took the help of the judiciary. At times, a few CSOs performing socio-politically active roles have provided support to health movements. As far as the relationship between the civil society and health movement is concerned, there is porosity associated with their nature of work. There is possibility of convergence between CSOs and health movement.

In the following section, drawing inferences from the field, we analyze how far there are some possibilities of CSOs aligning with movement and the commonalities between CSOs and movements.

Conversion and Divergence between CSO and Health Movement

Civil society organizations in Karnataka used health rights issues within the human rights framework. The language of human rights has emerged as a universal language of communication and CSOs endeavour to explain health rights in an explicit manner. They are defining and redefining the parameters of health rights. The CSO-led advocacy on the issue of the HIV/AIDS has further helped in operationalizing the right to health under the human rights framework. Several health movements also are using human rights framework. Thus, when both movements and CSOs use the same language, that is, human rights, there is a possibility for both the forces coming together as a coalition that may further strengthen existing health movements.

Civil society organizations consider health under the broader framework of human rights. A few CSO activists in India have started making demands that go beyond the liberal notion of rights. The liberal notion ¹² of health rights aims at accessibility, availability and acceptability of health care treatment. However, the liberal notion is more concerned about the health outcomes and does not take into account the sociocultural implication of health and socio-economic background of the people into account. As a result, the liberal notion of health does not include the equity aspect of health care as an issue of concern. When CSOs, such as KNP+, Arunodaya and Milana, demanded assurance of food security, provisioning of rehabilitation homes and so on, they indeed went beyond liberal notion of health rights. The health movement and a few aligned CSOs also advocate a holistic approach to health which is integrated with social, economic and cultural consideration. Therefore, there is commonality of perspective among the groups, that is, CSOs and movements. This provides opportunities for a stronger alliance for collaboration and mutual cooperation.

Advocacy carried out by CSOs in the state of Karnataka on HIV/AIDS, of late, has a feminist perspective to it. In a patriarchal society of Karnataka, they advocated the need of gender-specific health issues and gender equity issues. The advocacy organizations working on HIV/AIDS in Karnataka have been speaking in a feminist language. The women’s health movement and the JSA also have a feminist perspective. Hence, there can be greater possibilities for coalition among CSOs and health movements. Civil society organizations, such as KNP+, Arunodoya, Lawyers’ Collective and Milana, working on HIV/AIDS issues, targeted patriarchy at the grassroots level. It can be argued that CSOs have characteristics of a movement (although they do not have an objective of building a movement), as they have been trying to target the socio-political power structures of the society. As mentioned earlier, a movement strives for socio-political structural change, and CSOs work towards social change (change is socio-political in nature; CSOs do not target the state). In this context, there is a further possibility of coalition between CSOs and health movement.

Civil society organizations, working at advocacy level, lobby for the fulfilment of the health demands and needs of people. While translating HIV positive people’s demands into the language of rights, they negotiate with the state, although they seldom criticize it. Thus, a few characteristics such as communication and negotiation with the State are common for both CSOs activity and a movement. However, movements also oppose and criticize the state for its failure in assuring health rights.

Both health movement and activism led by CSOs have some common democratic characteristics. These ensure participatory citizenship to the marginalized and vulnerable sections of the society. The politics led by activism or movement is less electorally oriented. These initiatives incline towards ensuring expanding participatory and meaningful citizenship. Functioning through an innovative politics of struggle over issues concerning local and vulnerable communities and their empowerment, they articulate a vision of democracy as a creative political process, operating primarily at the grassroots level. Their politics are addressed to ensure access and control of people over their immediate social, economic and cultural sphere of life (Sheth, 1995). It encourages an inclusive democracy in the process of allowing the other to participate in the public sphere and public discourses. Such local organizing has the potential to impact larger political institutions at the state level and above (Shirley, 2001).

It is essential to draw a line between CSOs and health movements, as the nature of operation of these two forces is different. Most of the CSOs functioning under the guidelines of the state adhere to the broader paradigm of state and thus avoid criticizing the state vehemently. In the process, CSOs working for HIV/AIDS have remained supplementary to state and have not targeted the state adequately. One of the main reasons behind such behaviour of CSOs is that since the state is powerful in nature, CSOs usually do not aim to oppose or challenge it. The state has control over most of the resources and has been the financial source for a large number of the CSOs. Similarly, the state has power to decide the health issues and specifically relating to issues of HIV/AIDS. The state acts as the ethical guardian that permits CSOs or any other agencies or individuals to take up work in the field of HIV/AIDS. In this case, the state may deny any intervention in the name of secrecy and confidentiality. Thus, it has become very difficult to question the state, just as is the case in defence matters. Civil society organizations therefore often confine their activities to persuasion, and act as a lobby. Civil society organizations in Karnataka do not necessarily have clear-cut objectives towards leading a movement, or strategies meant for movement. Political parties particularly in Karnataka have fewer links with CSOs activity unlike in the case of movements.

Despite all the conducive factors and similarities that provide better opportunities for the movements to build a strong network with CSOs, a strong coalition has not been possible. There are several reasons for this: on the one hand, CSOs had some lacunae that have prevented them from building a coalition with health movements, and on the other hand, health movements also have their own weaknesses that have prevented them from aligning with CSOs and also prevented them in leading to a united social movement on health.

Civil society organizations working on HIV/AIDS in the state selectively raised modest issues. They persuaded the state to take up some policy measures or to implement adequate policies such that people’s health rights could be guaranteed adequately. The organizations have not brought forth the defunct nature of most of the government health centres, meant for HIV treatment and treatment denial cases, into the public sphere. Although the KNP+ negotiated with the state ministers and intended influencing the ministers towards eradicating discrimination, it restrained from criticizing the state government. The CSOs prevent themselves from projecting the dilapidated condition of the general health care scenario in the state. At least, they have not criticized the state as they have not been able to clearly state that failure in the provisioning of general health is nothing but the state’s failure. They have ignored the state as a hard target of opposition. The challenges offered by activism remain mostly ‘state oriented’, as they target the state and their goals, which can be achieved only by state action. ¹³

Most of the CSOs in the state being project based are devoid of zeal and require strength for a social movement. Project orientation of some organizations often prevents them from leading any movement. Most of the selected organizations, even including HIV positive networks (KNP+ and Arunodaya), do not think of anything beyond a project and availability of funds for the project. It is this attitude of the organizations that narrows their scope as a movement. ¹⁴ The NGOs have been addressing several issues including the slum issue, adult education, literacy, community health, etc. In most of the cases, the organizations approach these issues as vertical projects. As a result, these organizations tend to miss a holistic perspective. They are project oriented rather than aiming at the structural change or political change. Although some of the organizations work towards gender equality, they do it under some project. These organizations may have diverse ideological pursuits, and their advocacy of issues functions within the overall policy paradigm of the Indian state.

In Karnataka, a large section of people, particularly from the middle and higher classes, have not been reached by CSOs. As observed, almost all of the selected organizations focus mainly on the poor and vulnerable sections. Although the leadership comes from the middle class (Arunodaya is an exception), HIV positive patients from middle class are typically not drawn by CSOs, or are not approached by CSOs. Because of the nature of the disease and due to the secrecy attached, middle-class and higher-class women avoid organizational association. There is a fear among middle-class HIV positive people that organizations working for them may not maintain the secrecy of the health status of its members.

Although CSOs working on HIV/AIDS aim at both short-term and long-term goals, their advocacy seems to focus more on the short-term goals. They have been more active in influencing the state for policy changes relating to accessibility and availability of health care. They have some long-term goals, for example, a few selected organizations, such as Milana and Arunodaya, provided HIV positive women vocational training like tailoring and doll making, but those initiatives do not have proper focus on structural change in the society. Moreover, CSOs have not been raising issues of structural reforms that have been taking place since the late 1980s. While demanding availability of several medical technologies, most of them have failed to question the broader issues (which has a long-term engagement for the activism) of structural reforms (since late 1980s) and their impact on health, commercialization, increasing privatization of health and so on. For a discrimination-free society, where HIV positive people can be treated humanely, CSOs need to focus more on integrated approach and need to aim for long-term goals. Similarly, a few organizations are engaged in empowering women towards opposing patriarchy (negotiation and not protest) at several levels. But the number of organizations that are raising voice against patriarchy is less and they are also targeting the patriarchal forces inadequately. Civil society organizations used to avoid interfering in household issues unless women became completely destitute; organizations generally stayed away from taking any legal step to ensure rights of women.

Civil society organizations have inherent inner contradictions, such as a loose bonding through networks and a lack in mutual solidarity among the organizations. Arunodaya while working with other CSOs, such as Society for People’s Action for Development (SPAD) and KNP+, often felt excluded because Arunodaya is a small organization and has less socio-economic power. The power relations that operate within organizations, in turn, prevent them from realizing their potential for a movement. The inter-organizational network building was weak. There has been hardly any attempt made by CSOs working on HIV/AIDS to integrate with CSOs working on other health issues, and vice versa. Therefore, advocacy against female foeticide remains independent of the advocacy against HIV/AIDS. Such field realities show that these organizations often have not been able to realize the common oppression or the plight of women relating to health under all issues related to women. Even though women experience oppression differently, they cannot realize the commonality within and across movements that may be targeting a common system of oppression and domination that affects all women in the state. In this particular case, the experience gained from the field completely negates Mohanty’s (1991) assumption of a capability of building a coherent network by these groups that can add to feminist movement, despite having different agenda and focus.

The existence of different groups and their disparate ideologies and approaches have led to compartmentalization among groups. Organizational agendas span the range from reformist to radical and cover issues of broader range of concerns from the livelihood of poor women, sexual violence to free availability of antiretroviral (ARV) medicines across social groups, ¹⁵ which give rise to diversities of ideologies among CSOs. There were organizations which opposed the neoliberal economy and increasing privatization of the health sector, as against organizations which supported the public–private partnership (PPP) model.

Health movements were subject to several weaknesses as a result of which they seem to have failed to build a strong coalition across these groups. Although the PHM or JSA, whose vision is to embrace several health rights issues, has been able to target several factors responsible for bad health, it has, in turn, failed to carry out any action or sustained protest. As Chandhoke (2005) has mentioned, JSA, a national-level platform of social organizations working on health issues, has suggested approaching health care from the point of human rights, particularly the right to life. The PHM itself is popular only in three or four states of India, that is, Maharashtra, Karnataka, Delhi and Gujarat. The movement adopts strategies, such as public hearings and lobbying. The CHC, one of the leading organizations of JSA in Karnataka, was found to have organized only one public hearing till 2007 from the inception of the movement.

Health movements also have their limitations as most of them are inward looking than outward looking. One of the major aims of movements has been to lead a people’s movement or social movement, by bringing together all disparate groups, such as CSOs working for HIV and other health issues, women’s movements, trade unions, student groups and academicians, under one banner for the cause of assurance of health rights. But health movements have not been adequately successful in aligning themselves with CSOs for this purpose. Similarly, although movements have an objective of building cooperation with a network of HIV positive organizations, hardly any concrete effort has been made to fulfil this objective. Networks of positive people’s organizations have been disassociating themselves from health movements. Therefore, movements have failed in gaining strength by aligning with CSOs. As far as civil society networking on health is concerned, the initiatives have remained disjointed. The PHM and advocacy led by CSOs on HIV/AIDS have remained disorganized.

Conclusion

Health movement in the 1970s was articulated through women’s groups and organizations. Although initially the movement concentrated on pressurizing the Indian state to provide better health services, in the mid-1970s and onwards, it continued questioning and resisting the Indian state for different reasons. It was during this time the nature of CSOs underwent a change from ‘charity based’ to ‘political activism’ and some of the CSOs also supported the women’s health movement. In the era of globalization, when both the women’s health movement and civil society activism continued as more of a disjointed effort, in the year 2000 a cohesive health movement, the JSA or PHM, began. The health movements addressed several health issues including women’s health, HIV/AIDS and so on. The new health movement was a conglomerated effort of women’s groups, CSOs, academia and radical political parties.

As protagonists of rights, CSOs have often worked as lobby groups and put forward demands for adequate availability of care centres, medical technologies and medicines to HIV positive people. It is found that some of the demands put forth by CSOs were taken seriously by the state. For example, towards accessibility of health care to all, influenced by the civil society activism the Indian State, apart from many other steps, has made CD4 test free of cost for HIV positive people. The CSOs have also been addressing certain rights violation issues of HIV positive people at different levels, at their household, community and hospitals. The health movement was also working in similar direction and raised rights issues of HIV positive people and demanded health for all. Health movement has succeeded in raising many health rights issues that ultimately constituted a public discourse. The joint effort of movements and CSOs’ intervention has influenced the government in policy formulation and implementation pertaining to rights of HIV positive people.

Civil society organizations while focusing on HIV/AIDS issue, at times, have been supportive to health movements. There are several commonalities between CSOs activity and health movements. However, it is also found that despite existing conducive factors between activism and health movements to build a strong network, a strong coalition has not been possible. Civil society organizations working on HIV/AIDS raised soft and modest issues, mostly remained project based and operated within the parameters and constraints of the project. Low popularity within middle and upper class and a loose coordination between CSOs working on health issues in general, and addressing HIV/AIDS in particular, together created hurdles for aligning to the movement. Health movements had their own predicaments and could not integrate disparate groups. As far as the specific issue of HIV/AIDS is concerned, the health movement has had a limited role in addressing the rights of the people. What was required by the movement was to build strength by aligning with CSOs, but the movement has not been successful in this regard. Health movements also have a limitation as most of them are inward looking than outward looking.

It is the need of the hour to work towards building a common platform for the movement, and like-minded CSOs and individual activists should resolve avoidable differences. It is time to work as a united force and act as a strong lobby for a common goal of ensuring health care to all and to see specifically that people suffering from epidemics, such as HIV/AIDS, are given immediate and special attention. A strong coalition of groups can drag policy attention towards vulnerable sections, it can ensure that people suffering from communicable diseases like HIV/AIDS face no hurdles in accessing health care, face no stigma, discrimination and above all denial of treatment in either private or government health care systems can be checked.