Today, we run the first post of a 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.
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By Bongi Zengele, Lecturer and PhD Candidate, University of KwaZulu-Natal
Special thanks to Ujamaa for choosing me to share these few minutes reminiscing about the good old days spent with Mzwa and the team….hmmm I am deeply honoured!
‘Uphethe isinkwa ?… ngihlephulele …awufuni’ Phuthi Paleng–
This is a song composed by one of our own Phuthi Phaleng! These are the lyrics we use to sing along during our sessions, learning more about economic justice in the context of unemployment, HIV, and AIDS. Ujamaa centre offices in 50 Longmarket street became a ‘safety net,’ a ‘family home,’ ‘a safe space’ where we all met as a team exchanged ideas and theologizing ascertaining the drastic changes impacting our socio-economic context. Working in various communities engaging in advocacy work against violation of human rights.
This song articulates the inequalities we face in our country as there is a vast gap between rich and poor. This is where we learned about structural injustices that give rise to perpetual poverty. These are shackles that need to be dismantled for liberation to be celebrated by all. Our work in communities exposed us to enormous unequal distribution of wealth within a rich country that has enough to take care of its people should injustices be resolved.
Mzwandile Rodriguez Nunes was my manager, a dedicated, passionate uncompromising advocate, and activist for human rights. He was very critical and challenged the views of a profit-driven neo-liberal economic system and was very concerned about its economy’s present and future. As a swell of the unemployment landscape kept escalating beyond the expected, it expanded the gap between rich and poor. He parted this world in 2005 and left his legacy within Ujamaa centre that will continue to inspire all of us for many years to come.
He facilitated the Theology and Economic Justice program’s work that reminds us all that many aspects of our lives are controlled by systems. Unemployment is the result of systemic injustices. This is a vital message for unemployed youth, who are often blamed by family and the faith community for being ‘lazy.’ The work of this program uses the See-Judge-Act methodology. (See), analyze it Biblically (Judge) and select an appropriate transformational response (Act). The social analysis methodology was founded by a leader of the Worker Priest Campaign, Father Joseph Cardijn, in Belgium in the 1930s. The core purpose of Ujamaa is to mobilize, train, support, and empower the poor, the working-class, and the marginalized. This prioritizes work with women, youth, people living with HIV/AIDS, and the unemployed. It was working for the values of the kingdom of God and for a society in which all have abundant life (John 10:10). I co-ordinated Solidarity Program for PLHIV in Ujamaa and collaborated with him in engaging with the unemployed youth who were part of a network of Support Groups called Siyaphila.
Foundations of Siyaphila Support Network for People Living with HIV and AIDS
It is only towards the end of the nineties that there were initiatives from the Department of Health to support people through pre-counseling; however, there were limitations in these programs because there were no follow up programs to offer post counseling, ongoing care, and support to those tested HIV positive. Once a person was tested, HIV positive meant that they had AIDS and were soon going to die. Some were not critically sick; the differentiation between HIV and AIDS has recently been realized. Otherwise, there was no difference, and the lack of ARV treatment made it more difficult for people to want to know about their HIV status. Knowing your HIV status was succumbing to death, emotionally and spiritually, before the physical death happened. Sadly, there was an inherent stigma and discrimination that affected the lives of both the infected and affected people and families; as a result, more people chose not to know about their HIV status at all.
In 1998 I had my first encounter with a group of men and women who tested HIV positive from Edendale Hospital. They were devastated and were sitting in the CDC[1] with a nurse who explained different stages of HIV and AIDS inside the body. It was very tense and frightening; the fear of death was felt by all present while the people present were seriously searching for alternatives towards coping with the bad news they had received without knowing what to do next. At that time, I worked as a graduate assistant within the ISB[2]/Worker Ministry Project, now called Ujamaa Centre for Theological and Biblical Community Development and Research. Visiting the sick in the hospital was part of the practical theology activity and community engagement initiative. As a trained social worker, my contribution was offering basic HIV and AIDS counseling to those who needed it and psychosocial support.
After counseling each member and going through intensive group counseling, it became clear that death was not as close as the medical practitioners predicted it. Above all, these individuals were eager to offer care and support to each other, but they lacked the direction of handling their lives as people who can die at any given time. ISB/Worker Ministry facilitated the ‘Job Creation Project’ to engage with unemployed youth, with possibilities of earning an income to survive. The music project of playing Marimba was regarded as one of the basic income generation projects that would sustain the youth. The harsh reality was that this initiative was unsuccessful and unable to embrace all unemployed youth since playing musical instruments like Marimba needed a special skill accompanied by singing, which is not common to everyone diagnosed with HIV.
It was important for the leadership of the ‘Job Creation Project’ to be strategic in making it possible for both the talented musicians and non-musicians to benefit from the project at hand. The fact that some of these young people were part of the group members that tested HIV positive and were present at the CDC during the visit challenged the project to broaden their outlook towards a broader engagement with the present context of living with HIV. It is on 10 October 1998 that a group called Siyaphila was formed.
The word Siyaphila is an isiZulu word meaning ‘we are alive.’ It is a common phrase used every day when greeting the people both at home and in the community. It is here where persons’ encounter becomes a space for sharing at a deeper interpersonal level; this group was taking a position that was contending life against odds. They were told to go home and die, but they wanted to help new cases of people who tested HIV positive. This is part of advocacy and embracing life within very difficult circumstances.
Ujamaa centre’s response was in solidarity with PLHIV overtly offered the much-needed psycho-social and spiritual support, that became ‘SIYAPHILA[3]’ a life support structure. The use of Contextual Bible Studies became a tool of interrogating the context of living with HIV and AIDS by navigating alternative ways for survival resulting in contesting ‘ukuphila[4]’ in the face of ‘ukufa[5]’. Siyaphila as a phenomenon emerging from indigenous ways of embracing life challenges, without giving up and created an awareness towards the formation of new incipient theologies[6] rooted in a context of contesting life against all odds. According to Cochrane (1999:22; and also West 2000:606-607; 2001:182; 1999a:141), the phrase ‘incipient theology’ means an undeveloped theology found among ‘ordinary believers, believers untrained in the formal canons or history of theological method’ who ‘reflect upon their faith, they engage in the task of theology in a provisional way, gathering an as yet untested wisdom about the meaning of their faith.’
The adjective ‘incipient’ in the writings of West (2000:606-607) maintains Cochrane’s description These experiences unleash a multi-faceted embodiment of theologies of survival and life that surpasses forever moving landscape in HIV and AIDS of care and support in a context of facing the unpredictable life challenges and devastating threats with faith embracing SIYAPHILA.
Wenche Dageid (2014) conducted a longitudinal study over three years on psychosocial interventions for PLHIV in a semi-rural community in the Limpopo province. Forty-nine (49) PLHIV were asked about their motivation to join a support group. Twenty-two (22) PLHIV were asked about the reasons for not joining and the other half to join a support group. The study aimed to compare the characteristics and motivations to join and reasons not to join an HIV support group. The data gathered from male and female samples drew varied reasons that highlighted the implications for improved HIV/AIDS care and support practice policies. The study demonstrated that there are insufficient care services and support for PLHIV in health care settings. According to WHO (2005), HIV(VCT[7]) is the most common psychosocial support in South Africa available for PLHIV.
This is where pre and post-HIV counseling takes place. Magong et al. (2002) argue that this intervention is only for a short-term basis, is not accurately monitored and evaluated as there are more PLHIV who fall into the cracks and leave the health system without a trace. Freeman et al. (2007), Haffejee et al. (2010), Simbayi et al. (2007), Mundell et al. (2011) further attests that PLHIV now lives longer because of the availability of ARV treatment. This calls for a greater need for ongoing counseling followed by other psychosocial support forms, especially directed to PLHIV. They all strongly emphasize a greater need to strengthen services at a tertiary level of care for PLHIV. This can be followed by the most severe cases of physical and mental disorders. There is a need for access to treatment opportunities in community and at a primary health care setting to reach out to a wider spectrum of people. Wenche (2014) critically attests that support groups for PLHIV play a very important role in providing ongoing psychosocial support that is often insufficiently covered in the VCT setting (Haffejee et al. 2010). Support groups are often initiated by a professional person ranging from a nurse to a social worker. According to Uys &Cameroon (2008), support groups are often created and operate within a clinic or hospital setting. Freeman et al. (2007) and Mundell et al. (2011) attest that the literature from different countries in sub-Saharan Africa shows that attending psychosocial support group programs could improve the coping, well-being, and mental health of many PLHIV.
Support groups provide valuable social and emotional support and represent forums where those living with HIV can share their personal experiences, fears, and concerns. According to Krabbendam et al. (1998), Mabinda et al. (2010), Kako et al. (2011), and Mundell et al. (2011), being in a support group reduces isolation and promotes acceptance of living with HIV. It improves confidence, encourages new friendships, and extends the spectrum of networks to assist in the disclosure process, which may take different patterns. Furthermore, studies of support groups have shown that by joining a support group, an individual is exposed to a multi-layered spectrum of support and new opportunities, which may not be possible if a person is isolated at home and depressed, trying to make sense of his or her life with HIV as well as dealing with the fear of death. Being a support group member may facilitate access to much-needed resources, for example, ongoing basic training on HIV and AIDS, including ARV treatment. When available, food vouchers connection with self-help income generation connection projects, and problem-solving skills during a wide variety of training workshops are arranged and facilitated for PLHIV.
Reece et al. (2007) and Ndu et al. (2011) draw attention to the fact that women often dominate support groups, and a smaller number of men join. They mention that key factors are age grouping and unemployment. My emphasis is that this may be linked with the availability of support groups. For example, women of child-bearing age who attend antenatal classes may find more bonding sessions as they attend regular classes during their pregnancy waiting for their babies’ birth. Unemployment projects the higher levels of unemployed women who use the available time by attending support group sessions organized by the local clinic or hospital. Freedman et al. (2007) and Brandt (2009) highlight that people who join support groups experience higher psychological distress. Then Visser and Mundell (2008) note that those who do not see the need to join are often unaware of the group’s existence, or because they do not have an urge to do so until there is something that forces them to consult others in a similar situation.
For example, when the CD 4 count is low, the often-visible physical symptoms are more conspicuous. The patient is referred by a health care professional or by family and friends, and the fear of stigma and discrimination is a lived reality. Liamputtong et al. (2009), Heyer et al. (2010), and Gronlie et al. (2011) all argue that there is missing information about the reasons why people join or do not join a support group, which may be very personal. Seriously, there are different ways that men and women experience and engage in health-seeking behaviour. Likewise, Snow et al. (2010) and Skovdal et al. (2011) pay special attention to the health-seeking behaviour patterns between men and women. Wenche (2014) attests that knowing who joins or who does not may help policymakers and practitioners create optimal support interventions in primary health care settings. The baseline study aimed to compare the characteristics and motivations to join and reasons not to join HIV support groups amongst a sample of male and female PLHIV and draw implications for HIV/AIDS care, support practices, and policies.
[1] Communicable Diseases Clinic
[2] ISB-Institute for the Study of the Bible
[3] ‘We are alive’
[4] isiZulu name for life
[5] isiZulu name for death
[6] incipient theologies: is a product of the embodied experiences of the group who draw both on the resources of their own bodies the biblical text to bring to articulation what is inchoate.
[7] Voluntary Counseling and Testing