Agencies and Mechanisms of Social Inclusion and Exclusion Among People Living with HIV/AIDS in Mizoram

Abstract

The association of human immunodeficiency virus infection and acquired immunodeficiency syndrome (HIV/AIDS) with stigma and discrimination remain a challenge in combating HIV/AIDS. It pushes people to remain hidden with the potential to manifest in the future. This study aims to examine the agencies and mechanisms of social inclusion and exclusion among people living with HIV/AIDS (PLWHA) in the state of Mizoram. The study covers two districts of Mizoram, Lunglei and Saiha districts, selected purposively. Respondents were identified through different gateways like non-governmental organisations (NGOs) and hospital. A total of sixty respondents were interviewed, thirty respondents from each district selected proportionately. The study reveals that the same agencies which cater to the inclusion of PLWHA can also exclude them through different mechanisms. Agencies at primary and secondary level adopted a mixture of both inclusionary and exclusionary measures. At tertiary level NGOs, hospitals staff are seen to be more inclusionary than social institutions such as the church and youth associations. The study highlights the need for greater awareness on HIV/AIDS at the individual and community level.

Keywords

Agencies and mechanisms HIV/AIDS inclusion exclusion Mizoram

India has shown a steady decline in human immunodeficiency virus infection and acquired immunodeficiency syndrome (HIV/AIDS) prevalence since its first detection in 1986. According to HIV Estimation 2017 report prepared by the National AIDS Control Organisation, a nodal organisation for the control and prevention of HIV/AIDS in India, HIV incidence per 1000 uninfected population have declined from 0.64 in 1995 to 0.07 in 2017 (National AIDS Control Organisation, 2017). As compared to 2006 the number of Indians living with HIV/AIDS has decreased from 2.47 to 2.14 million in 2017 (NACO, 2006, 2017). Despite the decline in HIV prevalence, the challenge remains. The association of HIV/AIDS with stigma and discrimination remain a challenge in combating the spread of HIV/AIDS. It pushes people to remain hidden with the potential to manifest in future. It acts as a wet blanket, hindering access to preventive care and services. India too continues to portray new concentration of HIV/AIDS in different pockets of the states with cases of new infection accorded high among adults (15 years and above; NACO, 2017). As the existence of stigma and discrimination lies embedded within the milieu of social institutions, any attempts to end it needs to be addressed at the forefront of those institutions. It is, thus, pertinent to understand how these agencies channelise inclusionary and exclusionary mechanisms to people living with HIV/AIDS (PLWHA). And this study attempts to outline those agencies and mechanisms of social inclusion and exclusion among PLWHA in the context of Mizoram. In this study, agencies are classified into primary, secondary and tertiary. Primary and secondary agencies include primary institutions such as family, friends, relatives and kins, and neighbour. Tertiary agencies include service sectors such asnon-governmental organisations (NGOs), hospitals and social institutions such asthe church and youth association.

The experience of inclusion and exclusion occurs at different levels with varying degrees. The elements of inclusion and exclusion lie in the multi-faceted domain of a society.According to Kirsch (2003), the inclusion and exclusion of social actors is the product of power and policy, and the failure to recognise the role of social actorswhoinfluence the social surrounding. As institutions which govern can create its own biases, the existence of inclusion and exclusion is culturally embedded in institutions upon which people interact regularly. Ethnicity, gender, poverty and social standing provide a glaring dimension for the existence of different spectrum of injustice, marginalisation and exploitation. Besides, any groups on account of epidemiology, sexual orientation and appearance who do not conform akin to the majority worldview are placed at a disadvantaged position. As pointed out by Kabeer (2000), disadvantage position gives rise to social exclusion when the various institutional mechanism which allocates resources and assigned values systematically deny those resources and recognition to groups that will allow them to participate fully in the society. As a consequence, disadvantage position place people at the lower end of society and is frequently accompanied by economic discrimination and other forms of deprivation (Kabeer, 2000, p. 86). This form of deprivation is acute among those who suffered from a stigmatised illness such as leprosy, sexual diseases and HIV/AIDS.

The problem with HIV/AIDS persists not just in the condition itself. Several studies have portrayed the impact of HIV/AIDS in different dimension ranging from physical, psychological and social-economic on infected individual and their families (Ankrah, 1993; Beka & Shaka, 2017; Bor & Plessis, 1997; Fabianova, 2011). The psychological impact it had on an individual such as anxiety disorder, depression, guilt, low self-esteem and unhealthy coping mechanism causes more harm than the disease itself (Koka et al., 2013). Studies have indicated that HIV/AIDS increases the likelihood of PLWHA to be socially excluded (Mahajan et al., 2008; Skinner & Mfecane, 2004). It is the association of shame, guilt and fear among people with stigmatising illness that forces them to remain socially invisible, reducing them to a state of social death (Koka et al., 2013). And stigma acts as one of the key barriers in the delivery of care and services to HIV infected persons (Chan et al., 2008). The existence of stigma around HIV among PLWHA leads to higher rates of depression, anxiety and low adherence to treatment (Rueda et al., 2016). The effect of HIV is felt not only at the individual level but also at the level of family and society at a large. The cost of HIV/AIDS is enormous in terms of monetary and non-monetary measures. It affects not only the financial stability of a family but also the economy, by reducing labour supply and productivity, where a huge amount is invested annually to curtail the spread of HIV/AIDS (Dixon et al., 2002).

Introducing Mizoram and Mizo Society

Mizoram was once declared as a disturbed area brought on by the insurgency group Mizo National Front during the 60s. Today it holds the place as one of the most peaceful states in India. It has become one of the most literate states, only next to Kerala. The state lies in the tip of northeast India, which shares an international boundary with Myanmar and Bangladesh. It also shares land borders with Indian states of Tripura, Assam and Manipur. It is a small state covering a total area of 21,087 km² with a population of 10.97 lakhs (Census of India Report, 2011). For administrative purpose, it is divided into eight districts, and three autonomous district councils constituted for the people of Mara, Lai and Chakma. It is also a home to various ethnic tribes of the Chin-Kuki-Mizo, apart from the Chakmas and Brus.

The strategic geographical location of Mizoram, considering its nearness to the Golden Triangle provides an easy route for the spread of infections and drug trafficking. The existence of porous border and the subsequent opening of the border for trade along Zokhawthar–Rih provide an easy route for greater mobility of people and goods. Since the opening of trade route, the circulation of drugs has increased manifolds. As per the report of Excise and Narcotics Department of Mizoram, till December 2018 more than 150 kg of drugs and more than 10 million (in tablets) have been seized.¹ HIV was first detected in Mizoram in 1990 among injecting drug user (IDU). Since then, Mizoram continued to report a rise in HIV/AIDS infections. As per India’s HIV Estimation 2017 released by the National AIDS Control Organisation, HIV incidence per 1,000 uninfected population in 2017 was the highest in Mizoram state. It also occupies the top-notch in terms of adult HIV prevalence at 2.04% (NACO, 2017).

The fast spread of HIV in Mizoram is due to the prevalence of sexual contact and IDUs. According to HIV Sentinel Surveillance 2016–2017, 24.68% of female sex workers in Mizoram are found to be infected with HIV, which stood the highest among the states. The state also recorded the highest HIV prevalence among IDU (19.8%), and antenatal clinic at 1.19% (Ibid). Commenting on the prevalence of unsafe sex, officials at Mizoram State Aids Control Society attribute unsafe sex as the predominant mode of HIV transmission in the state. Around 70% HIV positive attributed unsafe sex as the mode of transmission, followed by sharing of needles which stand at 32% (Khojol, 2018).

Mizo Society

A glimpse of Mizo society is described in this section to comprehend the kind of society that exists in Mizoram. Mizo society exhibits a communitarian society. It is characterised by the existence of a close-knit society, based on clan and kinship. Communitarian ethos such as tlawmngaihna and hnatlang formed the essence of Mizo culture. Tlawmngaihna means the effacement of self in the service of others (Zama, 2009), and hnatlang refers to a common service for the common good of the community at large, where residents are to render (Mahapatra & Zote, 2000). To this day, it governs their community life. The above ethos forms the essence of Mizo culture. And various voluntary organisations which stand today in Mizoram has its beginning build on the above ethos, as their guiding principles. Mizoram has three major voluntary organisations that cater to different sections of the population. The Young Mizo Association (YMA) which is the oldest with the largest membership, cater for the youth population. It is often regarded as the backbone of Mizo social life, where its members took the responsibility of building casket, digging of graves and providing accompanied to bereave families for three nights The Mizo Hmeichhe Insuihkhawm Pawl was formed mainly for married women and Mizo Upa Pawl for a person who have attained above the age of sixty years. These associations have their presence across every locality and villageof Mizoram. Among thethree,YMA is by far the strongest and the largest civil society organisation in Mizoram with a total membership of 404,722 spread across 805 branches in and around Mizoram.² This aspect givesweight to YMA to influence the policy of not just the community but also of the state.

The British annexation of Mizoram erstwhile Lushai Hills in 1890 and the subsequent colonisation brought with it a sea of change. Mizoram had undergone a transition from traditional to modern society. Traditional institution like theZawlbuk³ a male bachelor’s dormitory was replaced with a formal system of education. It embraced new religion discarding traditional beliefs as propagated by the British missionary. Christianity spread throughout the region and became a force to reckon. Today the state recognised itself as a Christian state. And its tenets became the pulse of the people, influencing and directing the course of societal norms and values. As the presence of the church is strong, it can even challenge the state’s policy. A recent conflict between the church and the state on the issue of a permit to sell liquor in the state, cost the ruling government to lose the recent 2018 general election, putting an end to ten years old congress regime (Saha, 2018).

Apart from the youth associations, churches in Mizoram wield great influence in the lives of people. It can be said that the church along with the youth association is the largest and biggest non-state actors which govern not only the social values but also act as a guardian to safeguard their ethos and values.

Methodology

Multistage sampling was adopted to select districts and towns. Lunglei and Saiha districts of Mizoram were selected purposively. In the second stage, respondents were identified through snowball sampling using different gateways such as NGOs and hospital. Sixty respondents were identified for the study.In order to have equal representation across the districts proportionate sampling was used, wherethirty respondents were identified from each district through snowball sampling. Semi-structured interview schedule was used to collect primary data. Informed consent was taken from agencies to conduct the research and also from each respondent before they were interviewed.

The limitation of the study rests with the generalisation of the findings. As it was based on a very small sample spread across two districts of Mizoram only, as such, it does not provide sufficient scope to generalise the whole PLWHA population.

Results

Findings are presented into two headingsnamely, socio-economic demographic profile of respondents and agencies and mechanism of social inclusion and exclusion.

Socio-Economic Demographic Profile of the Respondents

Table 1 shows the demographic characteristics of PLWHA. Across the districts, male constitutes a higher percentage at 66% than female which accounted for 33%. Majority of the respondents belong to a youth group, with an average mean age of 29 years. Across the districts, it is seen that the prevalence of HIV/AIDS is high among youth, where majority of them are unmarried (76%).

Table 1.

Demographic Profile of the Respondents.

Serial No.	Characteristic	Districts		Total N = 60
Serial No.	Characteristic	Lunglei N = 30	Saiha N = 30	Total N = 60
1	Gender
	Male	20(66.7)	20(66.7)	40(66.7)
	Female	10(33.3)	10(33.3)	20(33.3)
2	Mean age (years)	27±5	32 ± 8	29 ± 7
3	Marital status
	Unmarried	27(90.0)	19(63.3)	46(76.7)
	Married	1(3.3)	2(6.7)	3(5.0)
	Divorced/separated	2(6.7)	9(30.0)	11(18.3)
4	Mean years of education	13 ± 3	12 ± 4	12 ± 3

Source: The authors.

Notes: Figures in parentheses are percentages; Mean ± SD.

Table 2 depicts the socio-economic characteristics of the respondents. The social structure of Mizo is based on tribe-subtribe-clan, and Mizo is an umbrella term used for all the various sub-tribes. Among the sub-tribe of Mizo, Lai is found predominantly across the districts (41%) followed by Lusei (26%), whose presence is high in Lunglei district. On the contrary, Mara tribe (20%) is found predominantly in Saiha district, an autonomous district council also known as Maraland in Mizoram. Other tribes such as Ralte and Hmar are found sparingly across the two districts. Numerous denominations existed in Mizoram. Majority of the respondents (41%) belong to the Baptist Church of Mizoram, where the proportion is higher in Lunglei district as compared to Saiha district. This is followed by Evangelical Church of Maraland at 23%, and by Isua Krista Kohhran and Lairam Isua Krista Baptish Kohhran at 6% each found predominantly in Saiha district. Denominations such as the Presbyterian is found to be present in both the district, while the United Pentecostal Church is found to be present only in Lunglei district.

Table 2.

Socio-economic Characteristics.

Serial No.	Characteristic	Districts		Total N = 60
Serial No.	Characteristic	LungleiN = 30	SaihaN = 30	Total N = 60
1	Sub-tribe
	Lusei	12(40.0)	4(13.3)	16(26.7)
	Mara	0(0.0)	12(40.0)	12(20.0)
	Lai	13(43.3)	12(40.0)	25(41.7)
	Ralte	2(6.7)	2(6.7)	4(6.7)
	Hmar	3(10.0)	0(0.0)	3(5.0)
2	Denomination
	Evangelical church of Maraland	0(0.0)	14(46.7)	14(23.3)
	Baptist	20(66.7)	5(16.7)	25(41.7)
	Presbyterian	7(23.3)	3(10.0)	10(16.7)
	United Pentecostal Church	3(10.0)	0(0.0)	3(5.0)
	Isua Krista Kohhran	0(0.0)	4(13.3)	4(6.7)
	Lairam Isua Krista Baptish Kohhran	0(0.0)	4(13.3)	4(6.7)
3	Primary Occupation
	Dependent	25(83.3)	19(63.3)	44(73.3)
	Government officer	0(0.0)	1(3.3)	1(1.7)
	Government worker	2(6.7)	4(13.3)	6(10.0)
	Wage labourer	1(10.0)	3(3.3)	4(6.7)
	Skilled labourer	2(6.7)	3(10.0)	5(8.3)

Source: The authors.

Note: Figures in parentheses are percentages.

The primary occupation of the respondents reveals a majority of them depend on their family for financial support and only 26% are in the workforce. And few are engaged in formal sector while the rest worked in the informal sector requiring hard work. Across the districts, the proportion of earners is higher in Saiha (29%) than in Lunglei (23%).

Agencies and Mechanism of Inclusion and Exclusion

In this study, the agencies and mechanism of inclusion and exclusion are categorised into primary, secondary and tertiary agencies.

Primary and Secondary Agency

Table 3 presents the primary and secondary agency. Family constituted the primary agency while secondary agency is categorised into friends, neighbours, relatives and kins. Family plays a major role in providing financial and emotional support or both (65%). Conversely around one-fifth of the respondents have not received any kind of support nor face any kind of indifference from family which could be attributed to non-disclosure of their status to family members. Across the districts, respondents from Lunglei received higher support from the family as well as faced slightly higher level of ex-communication from family than in Saiha district.

Table 3.

Agencies and Mechanisms of Inclusion/Exclusion: Primary and Secondary Group.

Serial No.	Agencies/Mechanism	District		TotalN=60
Serial No.	Agencies/Mechanism	LungleiN =30	SaihaN =30	TotalN=60
1	Wife/Husband/Family
	None	5(16.7)	7(23.3)	12(20.0)
	Financial support	10(33.3)	5(16.7)	15(25.0)
	Emotional support	8(26.7)	7(23.3)	15(25.0)
	Both financial and emotional support	2(6.7)	7(23.3)	9(15.0)
	Shunned/avoidance	5(16.7)	4(13.3)	9(15.0)
2	Friends
	Indifference attitude	0(0.0)	3(10.0)	3(5.0)
	Emotional support	13(43.3)	20(66.7)	33(55.0)
	Shunned/avoidance	3(10.0)	4(13.3)	7(11.7)
	Ignorant about status	14(46.7)	3(10.0)	17(28.3)
3	Neighbours
	Healthy relationship	19(63.3)	14(46.7)	33(55.0)
	Judgmental attitude	2(6.7)	3(10.0)	5(8.3)
	Discrimination	2(6.7)	2(6.7)	4(6.7)
	Ignorant about status	7(23.3)	11(36.7)	18(30.0)
4	Relative/Kins
	None	14(46.7)	6(20.0)	20(33.3)
	Emotional support	11(36.7)	9(30.0)	20(33.3)
	Care	2(6.7)	10(33.3)	12(20.0)
	Excommunication	3(10.0)	5(16.7)	8(13.3)

Source: The authors.

Note: Figures in parentheses are percentages.

Regarding friends as an agency of inclusion and exclusion, emotional support is the predominant mechanism of inclusion meted out to PLWHA constituting more than one-half (55%). This form of support is seen to be higher in Saiha district (66%) than in Lunglei district (43%). On the contrary, respondents face exclusion from friends in the form of shunning or avoidance. Friends excluded them purposely from their peer groups by not including them in group activities or simply by avoiding them. Non-disclosure of status stands at 28% and it is seen to be higher in Lunglei district (46%) than in Saiha district (10%).

As far as neighbour is concerned, more than one-half of the respondents ascribed to the existence of a healthy relationship with neighbours in both the districts. Around 30% assumed their neighbours are ignorant about their status. And more than 15% of the respondents reported having encounter discrimination on account of their HIV status.

Concerning relatives/kins, they provide emotional support and care in times of sickness. Around 13% reported their relatives and kins maintain distance and excommunicate them from their circle, and it is seen to be slightly higher in Saiha (16%) than in Lunglei (10%) districts. While 33% ascribed to have not received any forms of support and care from their relatives/kins.

Tertiary Agency

Table 4 presents tertiary agencywhich comprises of youth associations, counsellor, outreach worker, staff of NGO, hospital and the church. Diverse agencies are taken into consideration to capture the contrast of their inclusionary and exclusionary measures.

Table 4.

Agencies and Mechanisms of Inclusion/Exclusion: Tertiary Group.

Serial No.	Agencies/Mechanism	District			TotalN=60
		LungleiN =30		SaihaN =30
1	YMA/MTP
		Good relationship		0(0.0)	24(80.0)	24 (40.0)
	Social support		0(0.0)	1(33.3)	1(1.7)
2	Counsellor
	Counselling		0(0.0)	1(3.3)	1(1.7)
	Emotional support and counselling		30(100)	29(96.7)	59(98.3)
3	Staff and outreach workers of NGOs
	All ( good relationship, social andemotional support,counselling)		30(100)	30(100)	60(100)
4	Nurses and Doctors	30(100)		30(100)
	60(100)
Counselling and emotional support		30(100)	30(100)
60(100)
5	Church Groups

	Supportive		13(43.3)	19(63.3)	32(53.3)
Ignorant of status		17(56.7)	11(36.7)	28(46.7)

Source: The authors.

Note: Figures in parentheses are percentages. MTP; Mara Thyutlia Py.

Mizoram as a communitarian society, community-based organisations greatly influence the social life of the people. The YMA has a strong presence in almost every locality of the state, except sparingly in autonomous regions inhabited by the Chakma, Mara and Lai which constituted their youth associations. Although YMA has its presence in those areas, yet their influence is lesser than the local youth groups. In Mara autonomous region, Mara Thyutlia Py, a youth association governs the social life of the people and its youth population.

Community-based youth association is seen to be less inclusive than other agencies. social support is non-existence and it is low across the two districts. Although Saiha district (80%) ascribed to have a good relationship with youth association. Despite having a good relationship most of the respondents participated passively. On further probing, respondents mostly self-exclude themselves in community activities. Reasons provided are due to heavy work associated with community services requiring energysuch as digging of the grave, nightlong dormitory where youths spent the whole night at a deceased house which is part of Mizo culture. Respondents prefer minimal involvement for fear of showing sign of their status in public space.

As opposed to contrary belief, the church which is seen to be the epitome of compassion and acceptance is less inclusive than assumed. Although 53% indicated to have received support from the church, yet 46% preferred not to divulge their status. The reason for non-disclosure could be because of guilt and shame, as it is apparent that there is a tendency to vision HIV/AIDS as a result of sinful nature and disobedience to Biblical teachings (Ralte, 2016). In a study conducted by Ralte (2016) among church leaders of Presbyterian Church in Mizoram, the church has some reservation in advocating the use of condoms and support as this could indicate otherwise promoting pre-marital sex and acceptance of a life which goes against the confinement of the church doctrine of leading a pious life and abstinence from pleasure.

On the contrary, it is seen that counsellors, outreach workers and staff of NGOs along with the staff of hospital are more inclusive than other agencies. Apart from antiretroviral treatment, counselling, distribution of oral supplement treatment for IDU, testing facilities, nutrition supplement and other related services, workers in these agencies extended emotional support as well. The acceptance level of PLWHA is higher in comparison to social institutions such as the youth association and the church.

Discussion

The concentration of HIV/AIDS is high among unmarried youth. As 76% of the respondents belong to unmarried youth, the need for greater awareness on safe sex and safe injecting practices is wellfounded, especially among the young population. Despite majority of the respondents across the districts are educated till higher secondary with a mean score of twelve standards, and where the state has the highest literacy rate in India, education is yet to play an important role in the prevention of HIV/AIDS. Another pertinent issue is high dependency rate. With 73% of the respondents depending on family for their immediate needs, this posesa concern as it could impact the financial stability of the family and in accessing bettercare and facilities.

On a theoretical assumption, it is assumed that there exists no social distance within the primary group that share the same roof, but the findings indicate otherwise the occurrence of avoidance meted out towards PLWHA by their immediate family members. HIV/AIDS tends to create distance among family members, relatives and neighbours. Maintaining social distance is seen to be carried out across diverse agencies. And the findings also indicate the existence of inter-district variation in the level of inclusion and exclusion among PLWHA. A similar finding is reported in a study by Kanagaraj (n.d.) on community needs assessment on HIV/AIDS in Mizoram, which depicted the existence of substantial social distance between HIV infected and non-HIV infected person. The existence of social distance is seen to be carried out internally by PLWHA and by outside agencies. HIV in itself also contributes towards the social exclusion of PLWHA, as they preferred to minimally involve in social activities or self-exclude themselves from social life.

Primary and secondary agencies provided the much-needed primary care and emotional support. However, it also carried out some exclusionary measures such as shunning and avoidance. At tertiary level service providers play a dual role. They provide care and support apart from administering services that are available to a patient of HIV/AIDS. They filled in the gaps left void by other agencies. The role played by these agencies asserts a place of importance not only in the fight against HIV/AIDS but also in paving for inclusionary strides. Exclusion is acute in youth association, and PLWHA faces greater tendency of exclusion within the domain of the church and community-based youth association. The confinement of church doctrine and community ethos inflict a sense of guilt, whereby PLWHA prefer to self-exclude themselves from active social life and in the religious ceremony of the church.

As the existence of inclusion and exclusion is a product of the role of social actors that governs the social environment, addressing the issues of HIV/ADIS at those core will provide a greater impetus in the fight against HIV/AIDS. And this understanding is crucial. The presence of strong social institutions such as youth association, the church, which governs and dictates social norms particularly in Mizoram needs to be engaged at a greater level. With their connections to local communities, their involvement could influence how people view the disease from a more inclusive lens. A study in Thailand has indicated otherwise the successful intervention made by faith-based organisations towards educating, disseminating information and in bringing about change behaviour within communities about HIV/AIDS in the region (Clarke et al., 2011).

Conclusion

Institutions played a vital role as an agent of inclusion and exclusion. The same institution which provides scope for inclusion is also capable to exclude. Social distance between PLWHA and non-PLWHA tends to exist right from the basic institution of family to the community level.The need for proactive actions and awareness at individual and community level is of utmost importance if India is to realise its new commitment of ending AIDS by 2024. With high infection rate among the youth, India which is at the crossroad of demographic transition needs concerting effort to check and control the spread of HIV/AIDS. The prevalence of premarital unprotected sex manifests the need for imparting sex education at a young age. Further, the advantage of a high literacy rate and the presence of strong organisations in the state need to be channelised in the fight against HIV/AIDS.

Footnotes

Acknowledgement

The article was presented in the 6th Indian Social Work Congress held at New Delhi during 01–03November 2018.

Declaration of Conflicting Interests

The authors declare that there is no conflict of interest.

Funding

The authors received no financial support for the research, authorship and publication of this article.

Notes

ORCID iD

Lily Sangpui

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