CHAPTER 7
A CONCLUDING REFLECTION
contextualising some of the causes in her living conditions and in her relationships with her family. In summing up her life story, she equates her biographical history to her ill- health “now even this poor eyesight is a result of the journey I have travelled” (Nonceba, 77 years old).
Another example of how poverty is larger than HIV/AIDS in these two households is found in 21-year-old Palisa’s story. This third generation woman explicitly privileged her family’s poverty narrative. As pointed out earlier, Palisa was diagnosed HIV-positive in March 2005. She and her family have yet to experience what 48-year-old Lulama living with full blown AIDS and her family are going through. Thus one can understand and appreciate her bias in favouring her family’s poverty over her HIV status when telling us her story. However, we must not lose sight of her position, that of an
‘insider’ in this interpretation. Palisa’s reality as told in her own words is that being HIV- positive worries her, but that she is “angry. I am angry at my family”. Directing anger at her family, not her HIV-positive status, is her way of articulating the household’s dire condition. In a similar vein, she pins down her lack of desire to have children on her family’s poverty and not her HIV-positive status: “I have struggled all my life. I can not afford to look after a child. Nobody can help me do this” (Palisa, 21 years old).
As most of the discussed narratives in Chapters 5 and 6 illustrate, the women’s stories confirm a common research finding among poor women infected with and affected by HIV/AIDS. The finding is that chronic poverty is more threatening to these women than the risk and reality of HIV/AIDS (Baylies & Bujra, 2000; Ciambrone, 2001;
ICW, 2004; Steinberg et al., 2002; UNAIDS, 2004; WHO, 2002). However, there is an exception in the current study. For the 48-year-old Lulama, the reality of AIDS has disrupted her lifeworld similar to a ‘biographical disruption’ (Bury, 1982) as it is experienced by some wealthy individuals living with chronic illnesses. As the reviewed literature in Chapter 3 shows, her underlying existential assumptions that she held about herself and her lifeworld were thrown into disarray when she and her youngest daughter tested HIV-positive. The arrival of HIV/AIDS in her life was initially experienced as an unbearable event and led to her attempted suicide. The emotional suffering that she was
already experiencing in nursing her sickly child was compounded by the social stigma attached to AIDS. For her, this expressed itself in the form of insults from her sisters and some individuals in her community. This in part explains why the double burden of AIDS, for herself and her youngest daughter, has superseded the experiences of her family’s daily grind of poverty.
Lulama’s story sensitises us to a phenomenological tenet, that of ‘bracketing’ our preconceived ideas about the study participants. In this case, I was forced to bracket my common sense knowledge, which was backed by the literature reviewed in Chapters 1, 2 and 3, that is, women living in poverty and infected with HIV/AIDS do not necessarily experience a ‘biographical disruption’ (Bury, 1982) or a ‘loss of self’ (Charmaz, 1983).
In spite of this, most of what Lulama communicated, both verbally and in her body language, confirms a disruption in the essence of who she was before HIV/AIDS. This disruption includes, among others, her relationships with her mother and the participating daughter. She spoke about the pain she experiences in the reversal of roles between herself and her mother. As the eldest daughter, she is expected to care for her aged mother, who also has her own medical problems. And yet, it is her mother who nurses her whenever she is suffering from AIDS-related illnesses. She equally spoke about the pain and sadness that she experiences at the way her illness affects her children, especially her daughter with AIDS. She continues to blame herself for infecting her with HIV. She also expressed sadness at her inability to ‘control’ who will die first between herself and her daughter: “My wish and prayer to God is that he takes her first or that she becomes ill first so that I can nurse and be there for her”.
In spite of Lulama’s biographical disruption due to AIDS, her mother and daughter focus their stories on the family’s lifelong poverty. Their stories are similar to those of the other set of grandmother, mother and daughter. Thus one can conclude that these women epitomise the Ugandan adage that poverty “passes from one generation to another as if the offspring sucks it from the mother’s breast” (Group of disabled Ugandan women in CPRC, 2004-05: 3). Both grandmothers, the first generation in this trio, talked about their mother’s poverty. One grandmother’s mother died when she (grandmother)
was a baby. As a result she was brought up by an aunt, whose poverty is evident in 77- year-old Nonceba’s recalled childhood stories. She spoke about the suffering in her childhood that alludes to the aunt’s household poverty, and may explain the harsh treatment inflicted on her by her aunt. The other grandmother explicitly talked about her mother’s desperate poverty and her desire to look after her. These two stories continue this pattern of mother-to-mother poverty transmission. Like Lulama’s human immunology virus which may have been passed on to her daughter through breast feeding, analogously, so has the first two generations of women ‘breastfed their poverty to their daughters’.
Another observation from other studies that is evident in these women’s life stories is that HIV/AIDS is the tipping point from poverty to destitution (Steinberg et al., 2002; WHO, 2002). In both households, the only stable sources of income are the two grandmother’s old age social grants. At the time of the interviews, Lulama and her daughter were receiving disability grants given to some AIDS patients. These grants, as noted earlier, are conditional. Significantly this contribution to the household’s income is minimal. Both households’ aggregate incomes are inadequate for the massive needs in these families. In 77-year-old Nonceba’s household, a total of R2 340.00 per month feeds and maintains seven people, while R780.00 per month is expected to feed and maintain 83-year-old Nomaindia’s family of four. A grim suggestion is that these two households are one death away from destitution, if no other means of generating household income is expeditiously found.