SECTION VI: DISCUSSION AND CONCLUSIONS Chapter 12: Discussion of Results
2.3. General issues impacting on the well being of children
2.3.3. Stigma, secrecy and social isolation
financial implications for education budgets will be affected bi-directionally: nationally, less money is likely to be available for education expenses, while simultaneously, more orphans will require fully subsidised education (Giese et al., 2003).
In addition the witnessing of numerous deaths of young people may lead to a change in priorities so that there is less value placed on education. This perception could be coupled with a belief that the available education is of a poor quality and therefore education becomes unworthy of a child and family's investment (Babcock-Walters et al, 2002; USAID and the Synergy Project of TVT Associates, 2001).
There is little doubt that when resources are scarce, it is the orphans who will have to drop out of school (Foster et al., 1997b; Smart, 2000; UNAIDS, 1999). The net result of these factors is that children are likely to forfeit access to the socialisation and gate-keeping functions of schools and become dislocated from their peers. Schools perform numerous functions beyond formal education.
Whilst most educators would argue that schools in developing countries fail in their responsibility of offering 'an education for life' (March & Craven, 1998; Shaffer, 2002), school is still an agent of socialisation influenced by the dominant ideology of the country and is a major mechanism through which children are afforded the opportunity to change their status in society. Disrupted education jeopardises the developmental progress of vulnerable children (Foster et al., 1997a; Ntozi, 1997;
Smart, 2000). In South Africa, the departments of health and education collaborated to introduce a school-based life-skills programme in 2000, however an evaluation of this programme showed that it was conducted erratically and was rather skeletal in operation (Fox et al., 2002; Kelly, Ntlabati, Oyosi, van der Riet & Parker, 2002).
"treating people differently in a way which impairs their fundamental dignity as human beings who are inherently equal in dignity (Prinsloo vs van der Linde and Another 1997 (3) S A1012 at 1026 F - G, in Strode & Barrett Grant, 2001). Discrimination is dehumanising and illegal, yet widely practised. According to both the Constitution and the Equality Act neither the state nor any person^
may unfairly discriminate against children and youth. Nevertheless, discrimination takes many forms: overt in the forms of intolerance, hatred and even violence; or more subtle and covert, where an attitude makes a child feel inferior (Global Movement for Children, 2003). Discrimination is unacceptable in that it contradicts the basic principle that all children are born equal in dignity and rights (Fox et al., 2002; Giese et al., 2003).
Moreover HTV+ individuals suffer as a result of the both the attitudes and behaviours of others. By definition, prejudice and stigma are characterised by the holding of derogatory social attitudes or cognitive beliefs, expressing negative affect and displaying hostile or discriminatory behaviour towards members of a group on account of their membership of that group (Brown, 2001, in Strode and Barrett Grant, 2001, p. 3). As Burris (1999, in Strode & Barrett Grant, 2001, p. 3) points out, stigma takes the form of a social relationship between a stigmatised person and another based on the shared belief that some part of the stigmatised person's identity is spoiled and tainted. This creates a situation in which both the stigmatised individual and the other person share a belief that the stigmatised individual has been discredited, disgraced and become unacceptable, rendering them fundamentally and shamefully different. Just as in Biblical times, those suffering with leprosy were ostracised, isolated and driven away from normal social interaction, so too are those affected by HIV/AIDS. Despite the various programmes aimed at information dissemination, ignorance at grass roots levels about the mode of transmission of HIV creates widespread discrimination against HIV/AIDS associated individuals.
In addition, ignorance about the modes of HIV transmission lead people to fear 'catching' it through contact with an infected person or with their belongings (Cook, 1998; Mailman, 2002; Taylor et al., 1999; US AID and the Synergy Project of TVT Associates, 2001). A natural consequence of this ignorance is that even relatively well-educated individuals may refuse to have any association with an HIV+ individual in an endeavour to protect themselves from either contagion or infection. The social support systems (including nuclear and extended family, religious organisations, health and education facilities) of HIV+ individuals and their families dry up very rapidly (Clacherty &
Associates, 2001; Cook, 1998). As a result, many prefer to refer to HIV/AIDS with a string of euphemisms (Marcus, 2002, p. 10) rather than refer to it by name. Terms such as intoyakhe ("this thing"), amagama amathatu ("the three letter words"), ubhubhane ('the destroyer"), "the father, son and holy spirit"; "Yizo Yizo" ("It's it") are used in preference to the terms HIV and AIDS (Marcus, 2002). Some view HIV as a punishment sent from God to teach people the wrongfulness of their ways (Wild, 2001). Others view it as a form of poisoning, bewitchment, muti, or the result of avenging ancestral and other spirits (Marcus, 2002). People dying of HIV/AIDS are regarded as
I
having suffered a "bad death" that brings shame, embarrassment, isolation and guilt (ibid.). These emotions severely complicate the other more commonly-held emotions associated with bereavement.
Although the situation is beginning to change in a positive direction, many 111V ! people maintain secrecy, fearing that disclosure of their HTV status will not only harm them but their families as well (Foster & Williamson, 2000; Wild, 2001). The shame and embarrassment surrounding HIV/AIDS seems to stem largely from the belief that those who are HIV+ have been behaving immorally by engaging in unregulated sexual intercourse (Marcus, 2002). To avoid discrimination, the veil of secrecy can be stringently maintained by the individual and family with the result that many children are lied to by their parents and family about the cause of the illness and death (Cook, 1998; PACT, 2002; Refugee Studies Centre, 2002). Whilst the 'conspiracy of silence' is usually maintained to protect children and families, it can leave AIDS orphans feeling different, alienated from their peers and unable to confide in anyone for fear of bringing or increasing shame to themselves or their families (Giese et al., 2003; McKerrow, 1995; Pivnick & Villegas, 2000; Wild, 2001). These same children are also likely to be the victims of incremental discrimination due to the stigma of being poverty stricken and poorly educated (Brooks-Cole & Duncan, 1997). Children in poverty-stricken communities begin their life journey carrying the burden of numerous risk and adversity factors.
The larger picture of change and adversity brought about by the HIV/AIDS pandemic gives an indication of the scale and proportions of the problems. There is however, a more personalised psychosocial face that will be discussed in the following chapter.
Chapter 3:
The Psychosocial Impact of HIV/AIDS: Walking the Road
Many psychosocial issues associated with HIV/AIDS, transcend economic, political and other macrosystemic boundaries, as children made vulnerable by the vicissitudes of this pandemic become embroiled in a downward spiral of distress and difficulty. The psychosocial impact of HIV/AIDS begins when the parent or primary caregiver becomes HIV infected and continues long after the death of the parent/s. Far from offering the stability and security that children need through childhood, these children's circumstances are continuously in a state of flux and change as their situations alter with each unfolding process. One method of understanding the psychosocial impact on children and their families is to 'walk the road' or follow the life path, considering the impact at each successive stage that the child will probably experience (Foster & Williamson, 2000;
Schoeman, Killian & Hough, 2000). The stages most likely to be encountered by the child 'walking the road' include:
(i) The emotional impact of HIV infection that begins as the parent realises that they may be HIV+ and suffering with a stigmatising terminal illness. Alternatively the child may fear that the parent will or is becoming ill, as the child may notice that the parent suffers with frequent ailments, aches and pains,
(ii) Witness and/or participate in the home-based care of sick and dying parent/s and family members and becoming aware of the profound and distressing problems that accompany the severe physical debilitation associated with AIDS-related illness and death (Andiman, 1995, in Wild, 2001);
(iii) Experience the death of beloved parent/s and other family members,
(iv) Adjust to the changes consequent to the death of a parent. This usually involves decision- making about the future care and custody of the children, sibling dispersal, inheritance issues and the impact of multiple losses,
(v) Children may need to adjust to new home and/or care arrangements that may be very different to their familiar routine, neighbourhood, school, etc. They may be placed in de facto foster care, institutional care, live in child-headed households, or they may fall through all of the community safety nets and drift to the streets due to abandonment or exploitation, (vi) Many children will also be HIV infected and experience the major physical, social, emotional
and behavioural consequences of suffering with a terminal illness.