Today, we run the second post in the two-part series on “Juxtaposing the Impact of HIV and COVID-19 on the South African Economy.” The series is based on a lecture given by Bongi Zengele, a lecturer and a Ph.D. candidate at the University of KwaZulu-Natal, as part of the Mzwandile R. Nunes Memorial Lecture at our partner institution, Ujamaa Centre. You can read the first part here.
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By Bongi Zengele, Lecturer and PhD Candidate, University of KwaZulu-Natal
The Structure and Functioning of Siyaphila Network
The Solidarity Project for People Living with HIV is part of the Ujamaa research centre’s several outreach projects. A group coordinator is a group leader and a team of a working committee that ensures that a support group is running smoothly. The leadership structure changes every two years to allow new life and ideas to sustain group development. According to the June 2017 report, the project aimed to facilitate the development of sustainable community-based support groups that would support, enhance motivation and encouragement to PLHIV.
The emergence of a support group movement for PLHIV has been a significant response that has multiplied tremendously in communities and serves a broad community-based support networks, formed and led by People Living with HIV and AIDS. The Treatment Action Campaign (TAC) is one example of how the mobilization of PLHIV formed a strong voice against political injustices depriving access to ARV treatment to all that needed them. It is during this time where it was overt that HIV and AIDS is a social justice issue.
Working directly with the support groups motivated for the engagement examining and exploring a variety of lived experiences of faith and life as articulated by a network of members of Support Groups in KwaZulu-Natal. Using selected theological lenses allowed for exploring alternatives towards relevant pastoral care and counselling that is sensitive to an ever-changing context of HIV and AIDS.
An Overview of the Dynamics on Engagement with Support Groups for PLHV
In the study of Memories of AIDS Project by Philippe Denis (2016) on HIV/AIDS support group members, NGOs, FBOs, and Home-based carers in Pietermaritzburg over three years (2011-2013), 65 oral history interviews were followed by 11 focus group sessions. The life stories of community workers and support group members documented demonstrated a remarkable degree of agency and assertiveness in sexuality, gender relations, and religious beliefs. They found innovative ways of navigating medicine, Christianity, and African traditional religions. While the pandemic is heavy on families going through pain, loss, and suffering, the findings reveal that it has opened doors for acquiring new knowledge, skills, and new job opportunities in the primary health care setting that promotes HIV/AIDS prevention community level.
Denis (2016) aligns his study with that of Nguyen (2010) in Burkina Faso and Cote d’Ivoire that observed that there is a conflict between the needs of the donor-funded agencies and the daily struggles of the AIDS program volunteers (workers my emphasis) as they hustle for survival amid poverty. This even challenges the term volunteer as it is perceived in a context where one volunteers services for free, out of generosity because he or she has a steady income for survival instead of the poor and unemployed person who renders supportive services for survival is also perceived as a volunteer. It is also important that these services’ exposure avails more people to new opportunities for employment within HIV and AIDS context.
In early 2010 AIDS funding started to dwindle in South Africa as the international funders focused on other pertinent issues that affected the world other than AIDS. This led to the collapse of several HIV and AIDS organizations, including the support groups who could not access funding anymore. Marian Burchard (2014) observes a gap in the scarcity of scholarly work on low-income people’s response to HIV/AIDS in South Africa. She takes note of a special focus on fieldwork conducted and published in AIDS activism. Denis (2016) argues that there is a difference in HIV/AIDS support groups in the townships or peri-urban areas because the city is private as people are taking care of themselves and sometimes do not know each other well as the family members. So, it is easy to conceal HIV status and the possibility of engaging openly with peers. The opposite is true in a more stable and established environment where people have a history, and the extended family is around; thus, disclosing HIV status becomes complicated as more intimate family members may have diverse ways of responding that may impact negatively on PLHIV.
Different responses to challenges and discomfort are encountered in disclosing HIV status, and these were expressed ambiguously. The following studies with different support groups attest to it: Mbogo (2004) interviewed the Pietermaritzburg support group and Akintola (2010-2011) interviewed volunteers in a home-based care setting. De Wet (2004, 2012) interviewed FBOs,[1] then Root & Wynaard (2011), de Wet (2011), Naidu & Slip (2012) in understanding the agency of home-based care volunteers in rural KZN areas. Fear and major obstacles towards disclosure characterized responses from the PLHIV. It is important to acknowledge that these studies were taken during the era of AIDS denial and the beginning of the ARV roll-out. Robin (2006:312) refers to this era as a traumatic experience and profound negativity of stigma and death. Denis (2016) acknowledges that there are historical differences and the phases of how HIV and AIDS were perceived and responded to in South Africa. So, the first phase of AIDS was characterized by fear, stigma, discrimination, and lack of education on the disease. He reflects clearly on this in the Memories of AIDS Project (Denis 2016); the first phase of the epidemic was referred to as era of facing death with no medication. It is at this phase where religion was critically viewed in prevention and care. Early years of the pandemic saw AIDS as a punishment from God (Denis 2011), the inevitable consequence of a moral transgression.
This position was challenged vehemently in the later study in Denis (2016) of support groups. Participants in a research study refused to blame God or traditional religion for their HIV status. They emphasized positive religious attributes like compassion, reconciliation, and forgiveness. There was a strong focus on life and not to die with a shift from preparing for death to planning for healthy living with HIV. Furthermore, Denis (2016) attests that PLHIV were confidently expressing their assertiveness. The antiretroviral (ARV) treatment is perceived as a ‘God sent’ a ‘life-saving’ remedy that has brought life back.
This contrasts with the previous perceptions belonging to the first era of AIDS, as I have already alluded to earlier. Niehaus (2007) referred to death before dying in his study on understanding AIDS Stigma. In observing a shift of perceptions of living with HIV from death to life, Denis (2016) acknowledges that PLHIV, who participated in a study, expressed assertiveness in standing up and challenging priests, pastors, or person leadership positions who were incorrectly handling HIV and AIDS matters. Campbell, Foulis, Maimane, Sibiya (2005), Delius & Glesser (2005), Niehaus (2007), Posel, Kahn & Walker (2007) all attest that the perception has changed noticeably. God’s respective roles, ancestors, and biomedical are clearly understood and aligned towards a common good, HIV, and AIDS management. Memories of the AIDS project study highlight the fact that the participants who were community workers and health care promoters and PLHIV represented their knowledge of ARV treatment as missionaries of ARVs spreading the good news of life facing death. This study’s basic limitation was a weaker reflection on social, political, and economic causes of the epidemic.
In reviewing South Africa’s fourth decade of AIDS within nine provinces, the important observations are the following: roll-out of ARV treatment ensures that all who test HIV positive receive health care support they need; stigma has decreased; disclosure about HIV status remains a personal matter that depends on an individual’s discretion to disclose; in that way, each person is encouraged to take their responsibility and oversee their lives.
Juxtaposing the Impact of HIV and COVID-19 on the South African Economy: Implications for the Unemployed
There are very strong similarities between HIV and Coronavirus in that they are both socially transmitted. The spills of droplets from one’s mouth can infect others; hence wearing a mask is critical to mitigating against its spread. Social events are perceived as super-spreaders of the virus. This means the large social gatherings like churches, weddings, night clubs, and other gatherings in the malls remain super spreaders. However, the level of stigma and discrimination is different from that of HIV infection. This is related to how these viruses spread; HIV is highly through sexual encounters and other ways. For Corona, eyes, and mouth need to be protected from curbing the spread. So, when viewing the level of prevention varies as it is wearing masks versus wearing condoms.
The way minister of health and the State president worked together is to be congratulated because it created a united front in addressing poignant issues affecting all South Africans towards preparing for COVID-19, a great improvement as opposed to how HIV and AIDS were handled with denial as well as a lack of political will. Ongoing updates on the rate of COVID-19 accompanied by stringent measures that were communicated openly on the media and ensuring that all people are safe. Unfortunately, these stringent measures had a great impact on the economy. This is felt differently along multilayers of social strata, especially economically. Unfortunately, the poor were affected and are still affected harshly as it exposes the socio-economic constraints that seem to be long term. The economic shut down over five months and more resulted in a high level of people losing their jobs. This meant they lost their livelihoods, which calls for making drastic changes in their lives while witnessing the high levels of infection that leaves painful realities of burying loved ones in big numbers.
The common factor from both viruses is death. People dying in huge numbers and needing to comply with COVID-19 restrictions call for a new normal and a strong call for a joint effort from the government, civil society, and economy. Recent HIV statistics state that one in five adults is living with HIV. The number of infections peaked at 550 000 in 2001 and has been steadily declining to 200 000 in 2019. Still, a thousand new infections in one year is a staggering number, given all prevention measures, including safer sex. This attributed to the impact of the lockdown. Women remain twice as likely to live with HIV than men (25% vs 13%), resulting from multiple factors, including physiology and notably patriarchy.[2] HIV deaths have declined hugely from 290k in 2006 to 72k in 2019, due partly to reduced incidence but mainly to the roll-out of antiretroviral therapy. Seventy-two thousand people died of AIDS-related illnesses in 2019, despite all the treatment options now available.
The escalating rate of Gender-Based Violence (GBV) presented a serious concern as people were forced to live in one home with the perpetrators. A lack of support was needed because of a lack of safety movement. Corruption on misappropriation of funds allocated for safety against the spread of Coronavirus exposes heightened levels of unethical behaviors that need to be condemned in a very strongest sense in a spirit of advocacy for the protection of basic human rights…the struggle has just begun…..Aluta Continua!! Drawing lessons from SIYAPHILA Network, similar principles can be followed to sustain life by offering psychosocial support. ‘Sihlephulelane isinkwa ….in 1994 we proudly stood in the long queues to cast our votes for the first time in a democratic South Africa. Today people are standing in the long unending queues are for collecting food parcels, R350.00 welfare grant for Covid-19 and UIF. How much of this money reaches the people that are desperately poor. What has happened to the Democracy we struggled for when hunger, unemployment and corruption is the order of the day? Is this the liberation we fought for? Let us share PPE’s’ (Personal Protective Equipment’s), A constant call for justice for all. Ujamaa, is challenged through relevant Contextual Bible Studies to facilitate a critical theological reflection that challenges our present context. Movements like ‘UJAMAA’ are still a site of struggle for advocacy awakening a prophetic voice that evokes Accountability and Social Justice that challenges all political leaders we voted for, to lead ethically. Let Freedom and Justice reign!
Conclusion
Firstly, this introduction began with Phuti Paleng’s ‘NGIHLEPHULELE ISINKWA’ melody engaging on the ‘SEE’ aspect of the context full of inequalities where sharing the country’s wealth is key to celebrating our liberation. Introduction that mapped out the contents of this paper commemorating the life of a comrade Mzwandile! Whose spirit and legacy still live on. Secondly was a brief overview of Siyaphila Network’s foundations for People Living with HIV and AIDS as a pandemic in South Africa. Thirdly, an overview of the dynamics of engaging with PLHV as a base for renegotiating the new meaning of living positively with HIV and AIDS. Finally, a brief juxtaposition of HIV and COVID-19 on the South African economy and implications for the unemployed.
[1] Faith Based Organizations
[2] https://www.unaids.org/en/regionscountries/countries/southafrica
References:
Campbell et al. (2008) Journal of Health Psychology- London, Sage Publications http://www.whatworksforwomen.org/chapters/21-strengthening-the-enabling-enviroment/sect assessed on the 21 June 2017
Carter, N. (1991) Support Groups: Places of Healing HIV/AIDS focus paper#23. Retrieved on the 23 August 2012 from http://gbgm-uml.org/health/hiv focus/focus 023.cfm
CHART –The Cartography of HIV and AIDS, Religion and Theology. A Partially Annotated Bibliography, available at www.chart.ukzn.ac.za
Fereday, J, and Muir-Cochrane, E (2006) Demonstrating using thematic analysis, a hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1) Article retrieved 20 June 2013 from http://www.ualberta.ca/m,qm/
Guion, L (2006) Triangulation: Establishing the Validity of Qualitative Studies accessed 21 November 2017: http://eds.ifas.ufl.edu
Haddad, B (2002) Gender Violence and HIV/AIDS A Deadly Silence in the Church. The Journal of Theology for Southern Africa, #.114, 93-107.
Health Systems Trust Published on Health Website http://www.hst.org.za/ accessed 10 December 2012‘South Africa‘s HIV pandemic has stabilized.