“I Am Not Worthy Enough to Live This Life”: A Case of Socio-Economic Vulnerability and Reintegration of HIV-positive Women in Sri Lanka
M. E. P. Ranmuthugala
Freelance Writer, Researcher and Women’s Rights Activist, University of Colombo, Sri Lanka
Premakumara de Silva ☒
Professor, Department of Sociology, University of Colombo, Sri Lanka
Online Version Published: 31 December 2016
© 2016 South Asian Youth Research Institute for Development. This article is licensed under a Creative Commons Attribution 4.0 International License (CCBY).
Women living with the Human Immunodeficiency Virus (HIV) currently face many economic and social hardships due to social ostracisation. Women constitute 50% of the world’s population and yet face unique issues arising from lack of choices and stigma due to cultural practices. Promoting gender equality and women empowerment, and combating HIV/AIDS, Malaria and other diseases are both Millennium Development Goals (MDG) mandated by the United Nations. Successfully handling both will lead to economic and social participation of women around the world. Existing literature shows some efforts have been made by successive governments to curb HIV. Additionally, some non-governmental and community-based organizations such as Lanka Plus, Positive Hopes Alliance, and Positive Women’s Network (PWN+) assist Sri Lankans with HIV prevention programs and socio-economic vulnerability. The study analyses PWN+, which is mainly focused on supporting and empowering HIV-positive (HIV+) women, and the factors obstructing economic and social reintegration of HIV+ women in Sri Lanka. It also discusses factors supporting such reintegration of HIV+ women and addresses the inadequacy of existing policies for HIV+ women, suggesting possible policy modifications.
Keywords: Women; Gender; HIV-positive Women; Vulnerability; Social and Economic Integration
South Asia is a heterogeneous and extremely mobile region. It’s more severe HIV epidemic occurs in parts of India and Nepal where transmission occurs largely through sex workers, injecting drugs users and their sexual partners. According to the United Nations Joint Program on HIV/AIDS (UNAIDS), a minimum of 33.2 million adults and children were living with the infection worldwide in 2013. Of these, 2-3 million are estimated in South Asia, where the HIV epidemic is severe in magnitude and scope, with at least 60% of all people living with HIV (PLHIV) in India. Because the HIV epidemic is highly heterogeneous, designing informed, prioritized, and effective responses necessitate an understanding of the epidemic’s diversity between and within countries.
HIV transmits through unprotected sexual contact, from mother to child at birth, through breastfeeding, and through unsafe drug injections. A permanent cure is as yet undiscovered, but the use of antiretroviral therapy (ART) helps control HIV, reduce the chance of infecting others, and prolong lives, and is now classified a chronic disease, rather than deadly. HIV affects the human immune system, affecting CD4 cells and, without proper ART, can lead to acquired immunodeficiency syndrome (AIDS) that occurs when the virus has destroyed too many CD4 cells for the body to fight new infections or diseases. The deterioration of the immune system leads to the success of opportunistic infections – those caused by a microorganism that does not normally cause disease in humans but has taken advantage of the system’s weakness to attack – which can eventually lead to death.
Earliest reports argue that the simian immunodeficiency virus (SIV) found in Africa was the origin of HIV. While HIV possibly existed since the 1800s (CDC, n.d.), it had not yet been identified but was identified as AIDS even at the initial stages. According to the website CDC (n.d.), modern reports for AIDS began in the early 1980s in USA, with five deaths in 1981, and a possible 423 in 1982. In these early days, AIDS was seen as a gay men’s disease, thus distancing women, which led to a drastic increase when women were finally counted in 1983. In the early 1990s, prevalence estimates in the USA were at 600,000-800,000 and by the late 1990s estimates had risen to 850,000-900,000, with 40,000 new infections per year (Prezi, n.d.), heralding an epidemic. While the disease had spread globally by this time (being found in China in 1985), an entry ban in 1993 led to a decrease in the incidence in the USA and helped curb its spread.
Sri Lanka’s history of HIV and AIDS began in 1987 with the first reported case (the first locally-acquired infection was in 1989) and has never reached epidemic status. Sri Lanka has retained a prevalence rate of less than 0.01 of the population and has 4,300 cumulative reported HIV cases (National STD/AIDS Control Programme, n.d.). Heterosexual transmission remains the primary mode of transmission, with 80% of known cases resulting from such relations. However, homosexual transmission is on the rise, with transmission among men who have sex with men (MSM) in Kandy showing an alarming increase. The 25% increase in new infections within MSM in Kandy, at 4% of all reported cases, is 40 times the national average. Possible causes can include more open reporting. Increase of organizations working on HIV has led to community-specific support groups such as Heart to Heart for MSM, Equal Ground for the transgender community and Positive Women’s Network (PWN+) for women. This has led to identification with a particular community and more open reporting.
2. Research Problem
HIV+ women face many economic and social hardships due to social ostracisation. This social segment is passed over in policy consultations and by the society. Nor have the authorities looked closely at the specific issues that separate them from society. The resultant social isolation leads to different reactions in women including self-stigma and depression, which may not achieve the needed social and economic reintegration. Also, these reactions exacerbate issues because women hamper their own chances of survival. The gap is in identifying the repercussions of being HIV+ (especially in Sri Lanka) and the impact on their socio-economic stability. This paper aims to address this particular gap and contribute to the knowledge in the field.
3. Research Methodology
A pre-decided demographic of women who earned less than USD10 a day, almost all of whom were in the informal sector, was analyzed. Their education levels are low, many only having primary education. The sample was HIV+ female members of PWN+ between 20-60 years. PWN+, Lanka Plus, and Positive Hopes Alliance constitute the three organizations working with PLHIV in the country. At the time of this study, PWN+ was the only properly functioning organisation in Colombo and was chosen for its innovations: the only network to offer a drop-in centre, using a joint method of workshops and advocacy to enhance members’ lives, working to build capacity and skills, and being a national and international player.
There were 14 women staying at the drop-in center each night. Their visits were long, sometimes extending to years, and always more than three months. They were interviewed and became the case studies. These women were further filtered by the length of time they have been HIV+: Only those who have been HIV+ for over 6months, as at May 2013, were selected. Thus, the sample was women who became HIV+ before December 2012 and had been aware of their condition for most of that time. They would otherwise be unable to discuss their experiences and positive/negative aspects of their lives since contracting HIV. It also allowed them time to have begun reintegrating.
The reason for focussing on a key population of 14 was that only a maximum of 14 women resided at the center at any given time. They were affected by negative assumptions arising from their serostatus, and could not return home. These interviews were treated as ‘discourses’: ‘responses that are interpreted in a non-formal way’ (Ayers et al, 2006: 2), ‘guided by a framework based on the concept of vulnerability and attention to human rights’ (Ayers et al, 2006: 2).
All women living at the safe house during data collection were interviewed for the case study section and were asked to complete a questionnaire on stigma. Although the aim was to interview family members, this proved impossible, given the secrecy maintained by PLHIV.
In the interviews and when administering the questionnaire, a multitude of reactions was noticed: some were extremely willing to answer while some were hesitant. However, none of the residents refused to answer, although a few non-residents refused to answer some questions, possibly due to the different situations they face: those who have homes to return to could have been hesitant as they needed to maintain secrecy. The residents did not necessarily feel the same need because they were part of a group who were united (willingly or unwillingly) by their common status. Also, the response speed varied: Some were quick, while some were cautious. Some changed their stories, which meant observation and re-questioning later was necessary.
Triangulation was used in analysis: Firstly, quantitative data was obtained from administering the National Stigma Scale (first used in Sri Lanka in 2010) to understand the stigma faced and internalized. Secondly, as a more qualitative method, a loosely-structured informal interview was administered. These interviews became case studies due to the expansive nature each took. Finally, observation was used to substantiate findings: the members were observed for a minimum of six months before interviewing. This helped create a better picture of their feelings about the center. If they had returned home, the reasons for even temporary visits to the center could also be understood through observation. These three methods, when taken together, helped offset the limitations in each of the individual methods. Secondary data used included statistics and reports published in various journals and by organizations on HIV, discrimination, and socioeconomic interplays.
Figure 1: Analytical Framework
3.1 A Sri Lankan Case
There is no relevant Sri Lankan literature dealing with the subjects of economic and social reintegration. Much of UNAIDS literature deals with the region, but is not on Sri Lanka’s HIV+ women trying to socially and economically reintegrate. However, there is some literature on vulnerability, although based more on disaster vulnerability. The literature details how the poor face vulnerability, and in that respect, becomes crucial to this study. While poverty is not the same as vulnerability, they are connected in some ways: Fernando (2010: 22), drawing from Rakodi, says, ‘poor people have higher exposure to a variety of risks, shocks and stress situations and a lack of assets to mitigate and cope with such situations’. Poverty is an important, although secondary issue for HIV patients: the stigma they face due to their serostatus is a primary concern because it has denied them their rights, which in turn impact their income and social interactions. However, those who have lived in poverty prior to infection will suffer poverty at a much higher level following detection, because they will not have the little support they had previously. Thus, poverty is caused or exacerbated by stigma. Hence, this paper focused on the lack of entitlements as a cause for vulnerability: these women depend on others due to a lack of resources resulting from discrimination.
3.2 Positive Women’s Network
PWN+, the Sri Lankan chapter of a global grassroots-level network, was started in 2009 by Princey Mangalika and Mohamed Naseer, both HIV+ for over a decade. Princey contracted HIV from her husband who had been working in Germany in the 1990s, and following his suicide and burning down of their house, was the sole caregiver of the family. Naseer contracted from his wife who contracted through a blood transfusion for a debilitating illness. She passed away shortly after. None of their children are HIV+. Princey and Naseer head a network of over 400 HIV+ members and operate a drop-in center for approximately 14 women at any given time. About 10 members come to the center each day (all members are expected once a month) for various needs such as collecting medicine and traveling money that PLHIV receives from the Family Planning Association (FPA), and for clinic visits, and return home once done.
PWN+ aims to be the premier service provider for PLHIV, with a particular focus on women. The staff at the time of the research included the founders, an accountant (Malki ) and a project officer (Indeevari ), all HIV+. They believe that targeting and working with women to eradicate ignorance, poverty, and vulnerability will result in a reversal of the epidemic. They firmly believe that educating one woman will lead to the betterment of families and, thus, society. They focus on capacity building for women, with monthly or quarterly programs on sexuality, nutrition, and sexual and reproductive health (SRH). The organisation also undertakes counselling, family visits, caring for those stigmatised and separated from society until re-integration, forwarding to tests and obtaining medicine, providing medicine and tests not offered by hospitals, providing medicine and tests for side effects and opportunistic infections, programmes to raise awareness on reducing stigma and discrimination, training for self-employment, lending money for self-employment, and providing resource training and need-based support at funerals. The aim was to highlight women who were neither elite nor rich. They are a voiceless section of society, and it would be beneficial to see how a grassroots-level organization provided them a voice while making a significant difference in their lives. Such an organization is inherently mandated to work with a community and to learn from it. Thus, it is important to see if such an organization can help improve the community’s living conditions.
3.4 Limitations of the Study
One limitation lay in the difficulties in speaking about people’s sexual history and medical status. Others included reaching PLHIV, due to their time constraints and reluctance to participate in the study. While the intention was to cover all geographical areas in Sri Lanka, the priority of speaking to center residents limited the focus. However, the research is not Colombo-centric, as many members are originally from other areas. Those who live beyond the suburbs came to the center only once a month and were generally difficult to retain for interviews. The 14-person sample meant that it cannot be conclusively said that the research findings will hold true for all members. Additionally, while there was literature on stigma, discrimination, HIV, and reintegration of incarcerated women and women using drugs, very little literature exist on social and economic reintegration of HIV+ women. Finally, family members could not be reached because the PLHIV had not told them.
3.5 Ethical Considerations
Also, this research contributed to their vulnerability, by being in a position of power and by researching a ‘topic of sensitivity’ and they were ‘not always equipped to defend their own interests’ (University of Sheffield, n.d.); They were asked to participate by the organization head, whom they cannot refuse, which had major repercussions as they opted to tweak stories. While this may have been either a strategy to defend their life choices or to assert their own agency, they did attempt to resist their own vulnerable positions and our positions of power. Their dependencies, the President’s power, and their expectation of receiving material assistance by answering (University of Sheffield, n.d.) added to their conundrum (Miller et al., 2010: 16), all of which added to the ethical considerations faced in conducting this research.
In conducting this research, both their names and their stories needed to be safeguarded. To do so, all but the pilot interview were conducted by the researcher, and the pilot interview was conducted by someone who had more extensive and more personal knowledge of all these women. A naming system was used to ensure privacy, and the questionnaires were kept strictly confidential. In writing the case studies, data that could help identify them was not shared, using provinces as locations to ensure privacy. To mitigate the effects of vulnerability, observation and re-questioning was used. Also, it was emphasized that there would be no monetary gain.
4. A Brief Case Profile of the HIV-positive Women
PWN+ was established as a response to a nationally felt need for an organization specifically for women. It operates a drop-in center, offers training and workshops on topics important to PLHIV, and attempts to raise HIV awareness in the general populace. The interviewees were all HIV+ women who had either been referred to the organization by health service providers or had heard about PWN+ and approached it for assistance. These women resided at the drop-in center for 3 months or more while this study was being conducted. All were from the working class, and except one woman, were from a lower-income background as evidenced in the employment section of table 1.1, and all were rejected by their families or had no house to go to and were being looked after by PWN+. Most of these women (10/14) had some form of stable employment before they contracted HIV, and all of them (10/14, 100%) lost employment and income because of their serostatus.
At the time of the study, these women were engaged in casual labor. Of the working 11, eight were engaged in casual low-income employment, mainly as housemaids on a daily-wage basis. Almost all have lost a significant portion of their monthly income. Of the 14 women, 11 were married before contracting HIV. At the time of the study, only 2 were married, 5 were separated due to a combination of factors including their HIV status, and 5 were widowed. Their social situation had fallen to precarious levels following the changes in marital status. Additionally, it is hard to re-marry because of their serostatus. Those who were unmarried remained so. Some had lost partners because the partner was unwilling to marry an HIV+ woman (Malki, case study 7). In addition, 11 of these women contracted HIV from their husbands (8 of the 11) or long-term partners (3 of the 11). These women were not exposed to society, and are quite traditional in their beliefs and faithful to their husbands.
Their educational backgrounds were, with two exceptions, at the primary level. They knew enough to manage homes, but there were many without even the knowledge to write in their native languages. While these women were all from a lower economic, educational, and social background, the epidemic itself is not restricted to this stratum. However, given the focus on PWN+, these women were studied.
The following case studies detail the backgrounds of the 14 women:
Jamila (case study no: 1) is a 33-year old Muslim woman living with her 4-year old son in the Central Province. Her husband – who has HIV and possibly transmitted it to her – deserted them after discovering their HIV status, to be with another woman, and Jamila became the sole breadwinner of the family. The husband and wife lived abroad before the desertion.
Princey (case study no: 2), the Executive Director and President of PWN+, is a 58-year old former homemaker with primary education, who contracted HIV from her husband and now advocates for the rights of HIV+ women. Now a grandmother, she had to safeguard her daughters from arson and other forms of discrimination while they were growing up. Her husband committed suicide following discovery of his status.
Kumari (case study no: 3) is a 46-year old migrant worker, based in Colombo, with three grown up sons. She lost her first husband to HIV, while the second’s HIV status was unknown. She supported her sister and mother and has been working both at the center and outside. She has been HIV+ for over 15 years and lived without medicine for most of that time.
Malina (case study no: 4) is a 28-year old Muslim migrant worker, with a 3-year old daughter. She and her husband are from the North Western Province. Her husband is HIV- while the child is HIV+. The family lives at the center, and both work, although Malina’s contribution was more reliable.
Yogini (case study no: 5) is a 33-year old Tamil divorcee from Jaffna, with some experience in a handbag manufacturing company. She had a dangerously low CD4 count, which hampered her ability to work. She left the center to join another organization.
Kamala (case study no: 6) is a 48-year old domestic aide, whose abusive husband died some years ago. She lives with a long-term partner, and her grown up children and his family accepted this situation.
Malki (case study no: 7) is a 33-year old unmarried woman from the Sabaragamuwa Province. She worked as a manual laborer (on the production line) at a polyethylene manufacturing company, where she contracted HIV from her long-term partner before he passed away from AIDS. She is engaged in administrative work at the network’s office.
Tharaka (case study no: 8) is a former commercial sex worker, with two children, in the North Western Province. She eloped and married before 18, and while her children were young, came to Colombo where she was tricked into sex work. She is a constant fixture at the center, as she is rejected from home, and because Princey feels it is safer given her past employment.
Seela (case study no: 9) is an older woman, who seems lost and unable to process her environment. Her son is unwilling to visit her, while her only coherent desire was reuniting with him. She took longer than six months to recover from the stress of being HIV+, necessitating continued care.
Asoka (case study no: 10) is a middle-aged Tamil woman recently returned from South Africa. She had previously worked as an office accountant, and she acted apart from the others (possibly due to professional background and higher earning capacity). Her grown son had a gambling problem and wasted his mother’s money, while her sister kept attempting to take whatever remained. The husband passed away before she was brought to PWN+.
Ratna (case study no: 11) contracted HIV through a casual sexual encounter with a family friend on a trip. She was separated from her husband and living away from her family, but now desires reunion. However, they only visit, unwilling to take her home with them. She was highly traumatized at first but made a faster recovery than Seela did.
Indeevari (case study no: 12) was engaged in administrative work at the center when first interviewed. A 28-year old Sinhala widow with a son of 4, she left the center to be remarried. She contracted HIV through her husband who had contracted it through a blood transfusion.
Fathima (case study no: 13) is a 33-year old Muslim unmarried woman who left the organization to find employment and to marry eventually. She constantly spoke longingly of her classmates’ achievements, comparing it to her own stagnant life. She is now engaged in a garment factory and is completely independent of the organization.
Marisa (case study no: 14) is a 36-year old Muslim woman from Sabaragamuwa, with a 5-year old daughter whose mental growth has been stunted due to malaria at a young age. Her husband, a three-wheel driver, passed on HIV to both. They live in a land given by the mosque and are facing pressure from the society (into having more children) and discrimination from the hospitals (the husband’s serostatus was publicized by one doctor).
The above case studies are also supported by the quantitative data presented in table 1.1, which summarizes the most important social, economic and demographic details of the case studies. A graphical representation of these case studies follows.
4.1 A Brief Quantitative Analysis of the Sample
1.1: Summary of socio-economic and demographic data
Source: Field survey data – 2013
The quantitative data in table 1.1 was used to analyze the relationship between the respondents’ HIV status and its effect on their lives. These details led to interesting observations graphically related below.
Figure 1.2: Age distribution, in percentages
Source: Field survey data – 2013
Figure 1.2 shows that the entire population belongs within the labor force age limit of 15-64 (93% below 54 years and 43% in the youngest bracket identified, and thus potential labor force for many years). The general average of PLHIV in the country’s potential labor force is 80-90% for the age group of 25-64 according to the National STD/AIDS Control Programme’s statistics. Their contribution is valuable to the country’s economy, and their loss has major economic repercussions. This category of potential workers has, previously, earned higher wages or had long-term employment. Now, their economic condition has deteriorated due to their serostatus, which not only affects them personally but also the country’s economy, especially given the economy benefits greatly from migrant workers, a major component in the interviewed women.
Depending on the previous employment, six categories were identified. Migrant workers were the major component, with 6 of 14 (43%) from the employment group, followed by factory workers (2 of 14, 15%), one office worker and one commercial sex worker (10/14 employed). There were three homemakers (22%) and one unemployed (7%), a total of 4/14 (29%) unemployed.
Figure 1.3: Previous employment, in percentages
Source: Field survey data – 2013
The current employment statistics stand as follows: Five persons (36%) now unemployed, 7% more than previously. However, some of the previously unemployed women (3) were homemakers, with financial and social support from husbands. In this new equation, the unemployed women have no such support. One of the previous homemakers now heads PWN+ and is thus employed, but the two others are unemployed and dependent. Additionally, three previous workers (factory, migrant, and commercial sex worker) are now unemployed. This is an increase in dependents. Two salient facts are that all these women (who were previously employed) lost employment because of their condition and in most cases went from well-paying jobs to menial or low-paying jobs: migrant workers get higher salaries than local housemaids do.
Figure 1.4: Current employment, in percentages
Source: Field Survey data – 2013
Their social status is also affected by HIV. The following charts (Figure 1.3 and 1.4) show their marital status pre- and post-HIV and method of contraction. Of the 14, ten women were married before they heard they were HIV+. After contraction, a disruption can be seen. Only two are married (of the original 10, only one remains married), four have separated bringing the total of separated to 5 of 14, and five are widowed. Two of those who were unmarried, remain unmarried, while one managed to marry (however, Malina – case study 4 – married without knowing her serostatus). In 79% of the cases, it was a loved one (a husband [57%] or long-term partner [22%] with whom marriage was expected) who passed on the illness. Only 3 of the 14 were from other reasons, such as rape, casual sexual encounter, and from clients.
Figure 1.5: Comparison of marital status before and after contraction
Source: Field Survey data – 2013
Figure 1.6: Source of contraction, in percentages
Source: Field Survey data – 2013
These women have gone through upheaval in their lives due to HIV, resulting in changed mentalities, which the National Stigma Index aimed to analyze.
5. Analysis of Case Studies Using the National Stigma Index
The index was used for analysis because stigma plays a major role in the integration of people into society. Additionally, those who have felt stigma are hesitant to be part of the society, thus hampering their own chances of reintegration. The index was used to identify and measure the factors that obstruct and support economic and social reintegration of HIV+ women. The National Stigma Index was first introduced in 2010 in Sri Lanka. The questionnaire was piloted with PLHIV in the country, administered by those living with HIV to other PLHIV.
The National Stigma Index is divided into sections such as actual stigma and discrimination faced, perceived stigma, the possibilities of employment, and rights and the legal environment. These sections have questions addressing the response to HIV; the feelings of PLHIV about stigma in social, employment, and health settings; the availability of medication and clinical services; and internalized stigma. These same themes were discussed in this research too. These discussions led to identification of other themes discussed in depth in this paper.
The following numbers and percentages are this survey’s highlights. The findings differ highly from the national survey, possibly because the women are aware of the discrimination, and have now laid the blame where they feel it is due. Also, it arguably shows the effects of a social capital network such as PWN+, in that being a member has opened up new vistas for them, and has led to development and reintegration.
1.2: Summary of responses from HIV+ women
Source: Field Survey data – 2013
Table 1.2 shows the women’s perceptions of stigma. The question of whether people were afraid of them or of being infected by them had an equally-divided response. Half believed that people feared them, or being infected by them. A staggering 85% said that society does not understand the modes of communication and that society thinks HIV can be passed through casual contact. Although all training programs on HIV teach that it is not passed through casual contact, many remain ignorant.
The questions on judgments drew responses skewed in one direction. 85% of the women felt that people think it is shameful to have HIV, and that they do not wish to be associated with PLHIV. Surprisingly, religion or moral judgments were not used as a reason except by 15%.
The only one said people disapproved of her lifestyle, and quite unsurprisingly, this was Tharaka (case study 8). It is possible she has internalized all the stigma and now thinks people refuse her lifestyle. This is quite apparent when she wishes to go out. She is hemmed in by what society expects, which deters her from wearing what she wants. For her, decorum is a necessity.
Only one (Seela, case study 9) thought she looked sick. This is possible because she was a new entrant, and had recently been diagnosed with the condition, and was showing stress and strain. Additionally, she had been ill, which led to her recent stint in the hospital. Two did not know the reasons behind people’s response to their condition.
Much articulated fear of stigma, for example, Tharaka: “People look at me differently. They move away from me when they know I have HIV; they sit far away from me.” (Personal interview, January 2013). Compared with the high levels of fear of being stigmatized, only a total of 8 of the 14, or 57% (lower than the 85% who said people do not wish to be associated with them), reported actual verbal harassment of some sort in the previous six months. None reported physical harm. These verbal harassments were through calls that Princey received following media appearances, and in a few cases, responses from community or family members.
Contrary to the findings of the original index in 2010 (which said no persons had lost their employment because of their serostatus), a total of 10 women lost their employment as a direct result of their serostatus, which is 71.5% of the total sample and 100% of the total employed. However, in the six months preceding the interview, only 2 (14%) lost their employment, while four (28.5%) obtained employment at the center. As at the end of the research, the number of women who were engaged in some form of employment was 9 of 14 (64.2%).
One of their main concerns was the stigma associated with HIV. Hence why 85% agreed to the comment “People think that having HIV is shameful and that they should not be associated with me.” This same stigma is caused by unawareness of transmission methods, which is why 85% of the total said that people fear casual contact. In fact, many are always pleasantly surprised when HIV- persons initiate physical contact with them. Something often heard during the study was a variant of the following quotation from Yogini (case study no: 5):
“People are scared to touch me. Even my family members do not touch me. They think they will get HIV from doing so”. (Personal interview, January 2013).
This fear is best explained by what was shared by one woman who was not included in the 14 case studies as she was non-resident. She mentioned that in her house, her brother and sister know about her condition and tolerate her. However, whenever she is home (she is married so only goes to the mother’s house occasionally), they ask what soap she used to avoid it. They complain of itching if they accidently use it, and ask whether they could contract HIV through sharing soap. These are very real instances of stigma and discrimination, and women begin to internalize and generalize such as seen in the responses.
6. Factors Obstructing and Supporting Economic and Social Reintegration of HIV+ Women
This research focuses on the factors that obstruct and factors that support economic and social reintegration. The stigma and discrimination they faced have translated to economic vulnerability and become factors that obstruct their reintegration. Many lost their employment and so, have faced economic instability. Additionally, they lost family, which contributes to social vulnerability. These vulnerabilities hinder economic and social reintegration; i.e. those who lost employment because of stringent laws (such as those banning travel, entry, and stay) cannot be economically reintegrated until the laws have been replaced with more sympathetic laws. The lack of these vulnerabilities (coupled with other beneficial factors) would allow for reintegration. These highly marginalized women do not receive support from their families but do receive so from organizations. Their economic, social, and psychological needs are met and supported by these organizations, activists, and other authorities.
The following factors emerged when analyzing the case studies as supporting economic and social reintegration of HIV+ women. They allow and support them to reintegrate economically and socially. They are external and are provided by organizations and activists working on HIV. These factors are the imparting of knowledge and skills that lead to employment and economic self-dependence; lobbying for a more equitable and non-discriminatory society, and psychosocial support systems.
Counteracting obstacles faced, certain factors support successful social or economic reintegration. The drop-in center concept (expounded by PWN+) is one such, providing a haven for women. The network’s social capital aspects are most prominent, providing both a home and organizational structure. There are many who have not only moved out but have made a success of their lives, who live independently, sometimes even supporting other family members due to the organization’s support. However, the center has also proved double-edged. One of the most crucial understandings from the research is that some PLHIV at PWN+ have a dependency mindset, demanding the organization’s help. This is a detrimental result of having PWN+. While it is a good source of education and opportunities, it seems to breed a degree of disinterest in certain types of people.
The network works entirely as social capital, with many benefiting from financial aid, although few have successfully used these for long-lasting income generation. The training attended have provided the women new knowledge and skills. These trainings are conducted by many entities, from UNAIDS to lawyers, to government departments. PWN+ too has attempted to have monthly or quarterly workshops (residential to allow for those from far to participate) on topics such as income generation, law, nutrition, ART, and SRH. The workshops are conducted by the staff members who have all been trained previously.
Having trained members conduct these workshops has brought three benefits. Firstly, the members felt empowered being chosen to conduct programs. Secondly, they had the first-hand experience on any topic to share, and thirdly, the participants felt comfortable in the environment because the members knew each other’s situations, and could help each other out. This is essential and beneficial to convey solidarity. At the end of a workshop, the participants are happier, more energetic, and calmer than at the beginning. Even sharing of experiences is cathartic for them, and the inevitable tears were accepted as part of the process. Of course, reintegration in economic terms is harder for the organization to manage because of the stigma of the general populace and self-stigma. However, once the deep-seated psychological issues that PLHIV face are addressed, they can be reintegrated.
The organization’s advocacy efforts have been somewhat successful. They continue to lobby for better access to health services, medicine, and tests. They take grievances directly to the government and function as an intermediary between PLHIV and the government. They have successfully created a niche for themselves where the organization enjoys accreditation and acceptance as a representative of PLHIV. They campaign committedly for members’ necessities. In addition, many organizations support them, and there is a vast network behind them. However, it is felt that this network has not been properly utilized, only creating and using them for fundraising but not to benefit from the knowledge they possess. In spite of this, their presence and Princey’s popularity mean that the HIV response in the country will be long-lived.
HIV+ women are vulnerable due to a lack of resources and power. They are traumatized from their illness, even to the extent of becoming mentally ill leading to physical manifestations, which are dangerous, even fatal, for PLHIV, because their immune system is low and they cannot overcome them easily. Hence, they need peace of mind, but stigma effectively counters it, thus opening them up to possibly fatal illnesses. Thus, stigma and any factors that obstruct their reintegration are inhumane.
However, there are many factors that can mitigate these negative influences, and PWN+ as an organization covers most of these aspects. PWN+ offers some respite because it is made up of PLHIV. They support and look after each other. The drop-in center is important because it offers a safe space for those who are homeless. PWN+ is important because it is involved in essential services such as care and support, nutrition, hospital visits, and reintegration. Those who continue to remain at the center integrate into a network within it: the center promotes an identity while also educating and raising living standards. The organization is a new sub-society and social network for them. Additionally, the lobbying and campaigning by PWN+ allow PLHIV to speak up and be heard, offering political clout to marginalized women and men.
However, the center has not been able to breed women and men who are as courageous and outspoken as its founders. The organization fails in the lack of political and personal agency: everyone depends on Princey and the center, and are not willing to attempt a life outside. It was found that some women have a dependency mentality and that some are unable to cope with their altered lifestyle, although many have adapted well and are reintegrating into society. Those who live there or visit do not always wish to get involved in public fora. Thus, although they have environmental support through PWN+, it is not utilized adequately. This becomes an exacerbated problem when the existing policy framework is considered.
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 (National STD/AIDS Control Programme, n.d)
 The state of having detectable antibodies against a specific antigen
 A strange pneumonia had been reported among men, which was later thought to be AIDS-related.
 At this point, there were 2803 AIDS cases reported, of which a 1000 had died.
 Prevalence estimates –the estimated percentage of adults living with HIV
 Incidence –rate of occurrence of the disease
Author (s) Biography
M. E. P. Ranmuthugala is a Freelance writer, researcher and women’s rights activist, holds a postgraduate degree from University of Colombo, Sri Lanka. His research interests include public policy implementation, development administration, and gender and health governance. He has published a number of articles in peer-reviewed journals and book chapter in an edited volume.
Premakumara De Silva received his B.A. (Hones.) and M.A. in Sociology from the University of Colombo and MSc and PhD in Social Anthropology from the University of Edinburgh, UK. He has won several prestige international fellowships including British Academy, American Academy of Religion, Sir Radcliffe-Brown and Sir Remond Firth Fellowship of Royal Anthropological Institute in UK, Award of Commonwealth Countries of University of Edinburgh (Sir Ernest Cassel Award), and Wenner – Gren Foundation for Anthropological Research in New York. He was the first Deputy Vice Chancellor, and former Head of Sociology Department and the Senior Student Counsellor of University of Colombo. Prof. de Silva was the president of Sociological Association of Sri Lanka (SASL) 2007-2009, and the Honorary Council member of Social Scientist Association of Sri Lanka (SSA). His research interests include political use of religion and ritual, nationalism, local democracy, youth culture, Indigenous study, violence and globalization. Prof. de Silva has won several international competitive research grants most recently Australian Research Council (ARC) grant for the collaborative research project title ‘Religious Innovation and Social Reform in Sri Lanka’ (2015-2017). He has published eight books, several book chapters and number of articles to his credit. He is currently working on a monograph, titled ‘Beyond the Sacred Journey: Varieties of Pilgrimage at the Sri Pada Temple in Sri Lanka.
“I am not worthy enough to live this life”: A case of socio-economic vulnerability and reintegration of HIV-positive women in Sri Lanka by South Asian Youth Research Institute for Development is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.