Too poor to be treated: bottom-up advocacy by HIV+ activists in Khayelitsha and Lusikisiki, South Africa.

Abstract

ABSTRACT The attainment of development is often contingent on the promise that those affected can meaningfully participate in policy-making processes and decision making. However, over the past decades, there has been limited to no scholarly consensus about the meaning and purpose of these promises of emancipation. Therefore, this study contributes to theoretical and practical responses to popular participation within systems of power that shapes e condition through development occur. This study employed qualitative approaches using in-depth interviews with and participatory observation of key informants to answer the central research question: to critically examine the shift in AIDS activist advocacy tactics after the antiretroviral therapy (ARTT) rollout by people and social movements affected by HIV/AIDS in Khayelitsha and Lusikisiki, within a national context of dramatic changes in the balance of forces in 2003. The study found that state-led participation has elements of tyranny. If scholarship analysis of popular AIDS activism ended in 2003, that would have been short-sighted. At that juncture, the activists in Khayelitsha and Lusikisiki, instead of retreating, stirred collective pressure to compel the South African government to deliver ART to save lives. During policy implementation, protest action may diminish during implementation of policy and some may fall in abeyance, which does not necessarily necessitate retreat. The ART rollout takes place at local levels, which then meant that activists had to revive dormant participatory structures through popular agency to democratised healthcare. Newer typologies of participation and the conditions that facilitated these forms of engagement emerged. These included the variants in participation during policy implementation, demonstrating activists’ undertaking in forcing the state to deliver services, which had implications for the survival of their movements going forward. Activists shifted their tactics from traditional antagonistic engagements with the state to the use of a dual-tactical approach to allow for heterogeneous engagement with the state at various levels. Activists made health clinics sites of contestation and protesting against the imposition of unattainable ART accreditation, rejecting bureaucratic state power in policy implementation by rationing service delivery. Activists further sustained their engagement with provincial public officials by combining lawyering and popular protests, as direct action forced the state to release the ART rollout plan. This shows that grassroots activists’ collective action can force the state to concede to popular pressure while losing other battles, as shown by the rationing of ART that continued. The findings suggest that movements ought to shift tactics, allowing for modifications in approaches and taking advantage of various state ruptures at provincial levels to achieve their social movement goals. The study concluded that there are glaring limits to participation because movement resources can influence the ongoing ability of activists to continue fighting. That is, the practice of participation is complex and does not inherently amount to movement decline. IQOQA LOCWANINGO Ukufezekiswa kwentuthuko ngokuvamileyo kuncike kwisithembiso sokuthi labo abathintekile bangabamba iqhaza ngendlela enohlonze nephusile ezinqubweni zokwenziwa kwezinqubomgomo kanye nasekuthathweni kwezinqumo. Kodwa-ke, kumashumi-nyaka edlule bekukuncane kakhulu noma-ke nje kungekho neze ukuvumelana phakathi kwezifundiswa mayelana nokuthi zisho ukuthini lezi zithembiso zenkululeko futhi yini inhloso yazo. Ngakho-ke, lolu cwaningo lufaka isandla ezimpendulweni zethiyori kanye nalezo eziphathekayo maqondana nokubamba iqhaza kweningi labantu ngaphansi kwesimo-ngqikithi esinezinhlelo zamandla ezibumba isimo okungenzeka ngaphansi kwaso intuthuko. Lolu cwaningo lusebenzise izindlela-kusebenza ezigxile ekutholeni izincazelo kanye nokuqonda okujulile (qualitative approaches) ngokusebenzisa izinhlolo-mbono ezijulile kanye nendlela-kucwaninga yokubukela nokuqaphela lokho okwenziwa ngababambiqhaza bocwaningo, lapho abahlinzeki bolwazi abangongoti bephendula umbuzo ongumongo wocwaningo: ukubukisisa nokuhlolisisa ngokujulile nhlangothi zonke ukuguquka okwenzekile kumasu namaqhinga ezishoshovu emkhankasweni wokweseka impi yokulwisana nengculazi kulandela ukuqaliswa kwezinqubo zokukhishwa nokusatshalaliswa kwemishanguzo yokudambisa ingculazi (I-ART) okuwuguquko oluqondene nabantu kanye nezinhlangano ezithintekile ngenxa yesandulela-ngculazi nengculazi eKhayelitsha kanye naseLusikisiki, ngaphansi kwesimo-ngqikithi sikazwelonke lapho ngowezi-2003 kwaba khona uguquko-simo lwamandla. Lolu cwaningo lwathola ukuthi ukubamba iqhaza okuholwa ngumbuso kunabo ubundlovukayiphikiswa obuthile. Ukube ukuhlaziya kwezifundiswa ubushoshovu obunamandla bokugqugquzela impi yokulwisana nengculazi kwafinyelela esiphelweni ngowezi-2003, lokho bekuyosho ukungabi neze nomqondo ophusile. Kulelo qophelo, izishoshovu eKhayelitsha kanye naseLusikisiki esikhundleni sokuhoxa nokuhlehlela emuva zafaka ingcindezi ngokuhlanganyela, ngenhloso yokuphoqelela uhulumeni waseNingizmu Afrika ukuthi ahlinzeke ngemishanguzo yokudambisa ingculazi ukuze kusindiswe izimpilo zabantu. Ngesikhathi sokuqaliswa kwenqubomgomo, kungenzeka inciphe imibhikisho futhi kungenzeka eminye ithi ukumiswa kancane, kodwa-ke nakuba kunjalo lokho akusho neze ukuthi ngalokho izishoshovu kumele zihoxe noma zihlehlele emuva. Ukuhlinzekwa kwemishanguzo kwenzeka emazingeni ohulumeni basekhaya futhi lokho kwadinga ukuthi izishoshovu zivuselele kabusha izinhlaka zokubamba iqhaza ezabe sezifadalele ngokusebenzisa ukuqwashiswa komphakathi wonkana ukuze kuqinisekiswe ukutholakala kosizo lwezempilo oluhlinzekwa futhi lulawulwe ngokuhambisana Ukufezekiswa kwentuthuko ngokuvamileyo kuncike kwisithembiso sokuthi labo abathintekile bangabamba iqhaza ngendlela enohlonze nephusile ezinqubweni zokwenziwa kwezinqubomgomo kanye nasekuthathweni kwezinqumo. Kodwa-ke, kumashumi-nyaka edlule bekukuncane kakhulu noma-ke nje kungekho neze ukuvumelana phakathi kwezifundiswa mayelana nokuthi zisho ukuthini lezi zithembiso zenkululeko futhi yini inhloso yazo. Ngakho-ke, lolu cwaningo lufaka isandla ezimpendulweni zethiyori kanye nalezo eziphathekayo maqondana nokubamba iqhaza kweningi labantu ngaphansi kwesimo-ngqikithi esinezinhlelo zamandla ezibumba isimo okungenzeka ngaphansi kwaso intuthuko. Lolu cwaningo lusebenzise izindlela-kusebenza ezigxile ekutholeni izincazelo kanye nokuqonda okujulile (qualitative approaches) ngokusebenzisa izinhlolo-mbono ezijulile kanye nendlela-kucwaninga yokubukela nokuqaphela lokho okwenziwa ngababambiqhaza bocwaningo, lapho abahlinzeki bolwazi abangongoti bephendula umbuzo ongumongo wocwaningo: ukubukisisa nokuhlolisisa ngokujulile nhlangothi zonke ukuguquka okwenzekile kumasu namaqhinga ezishoshovu emkhankasweni wokweseka impi yokulwisana nengculazi kulandela ukuqaliswa kwezinqubo zokukhishwa nokusatshalaliswa kwemishanguzo yokudambisa ingculazi (I-ART) okuwuguquko oluqondene nabantu kanye nezinhlangano ezithintekile ngenxa yesandulela-ngculazi nengculazi eKhayelitsha kanye naseLusikisiki, ngaphansi kwesimo-ngqikithi sikazwelonke lapho ngowezi-2003 kwaba khona uguquko-simo lwamandla. Lolu cwaningo lwathola ukuthi ukubamba iqhaza okuholwa ngumbuso kunabo ubundlovukayiphikiswa obuthile. Ukube ukuhlaziya kwezifundiswa ubushoshovu obunamandla bokugqugquzela impi yokulwisana nengculazi kwafinyelela esiphelweni ngowezi-2003, lokho bekuyosho ukungabi neze nomqondo ophusile. Kulelo qophelo, izishoshovu eKhayelitsha kanye naseLusikisiki esikhundleni sokuhoxa nokuhlehlela emuva zafaka ingcindezi ngokuhlanganyela, ngenhloso yokuphoqelela uhulumeni waseNingizmu Afrika ukuthi ahlinzeke ngemishanguzo yokudambisa ingculazi ukuze kusindiswe izimpilo zabantu. Ngesikhathi sokuqaliswa kwenqubomgomo, kungenzeka inciphe imibhikisho futhi kungenzeka eminye ithi ukumiswa kancane, kodwa-ke nakuba kunjalo lokho akusho neze ukuthi ngalokho izishoshovu kumele zihoxe noma zihlehlele emuva. Ukuhlinzekwa kwemishanguzo kwenzeka emazingeni ohulumeni basekhaya futhi lokho kwadinga ukuthi izishoshovu zivuselele kabusha izinhlaka zokubamba iqhaza ezabe sezifadalele ngokusebenzisa ukuqwashiswa komphakathi wonkana ukuze kuqinisekiswe ukutholakala kosizo lwezempilo oluhlinzekwa futhi lulawulwe ngokuhambisana nezifiso zesiguli futhi sihlinzekwe ngolwazi ukuze sikwazi ukuqikelela impilo yaso. Ocwaningweni kuvele izinhlobo ezintsha zemikhakha yokubamba iqhaza ngokwehlukana kwayo kanye nezimo ezenza ukuthi zenzeke lezi zinhlobo zokuzibandakanya. Lokhu kwabandakanya nezinhlobo ezihlukile zokubamba iqhaza ngenkathi kuqaliswa ukusebenza kwenqubomgomo okuyinto ebonisa isibopho nokuzimisela kwezishoshovu ekuphoqeleleni umbuso ukuthi uhlinzeke ngezidingongqangi futhi lokhu kuyinto engaba nomthelela ekuqhubekeleni phambili nokungashabalali kwemibutho yezishoshovu kusuka manje kuya phambili. Izishoshovu zaguqula amasu namaqhinga azo kusuka ekuxhumaneni kwazo nombuso okujwayelekile lapho bezibonisa ulaka nethukuthelo yazo zaqoka ukusebenzisa indlela-kusebenza yamasu namaqhinga emkhakhambili ukuze lokho kuvumele ukuxhumana nombuso okuxubile okwenzeka emazingeni ahlukahlukene. Izishoshovu zenza imitholampilo yezempilo yaba yizizinda zokuphikisa nokubhikishela ukufakwa ngenkani kwezidingo eziqinile zezimvume-kugunyazwa kwemishanguzo yokudambisa ingculazi ezingatholakali neze kalula, ukuchithwa kwamandla ombuso agxile ezinqubweni eziyinkimbinkimbi futhi ezibambezelayo ekuqalisweni kokusebenza kwenqubomgomo ngokubeka imikhawulo nokulawula ukuhlinzekwa kwezidingongqangi. Izishoshovu zaqinisekisa futhi ukusimama nokuqhubekela phambili kokuxhumana kwazo nabasebenzi bakahulumeni ezifundazweni ngokusebenzisa abameli nomthetho kanye nemibhikisho yomphakathi wonkana njengezinyathelo-ngqo zokuphoqelela umbuso ukuthi uhlinzeke ngohlelo lokukhishwa kwemishanguzo yokudambisa ingculazi. Lokhu kuyabonisa ukuthi izinyathelo ezithathwa ngokuhlanganyela yizishoshovu emazingeni aphansi omphakathi zingawuphoqelela umbuso ukuthi uyivume induku yengcindezi evela emphakathini jikelele wenze lokho okufunwa ngumphakathi futhi kusenjalo ngakolunye uhlangothi nazo izishoshovu zibe ziyivuma eyokuhluleka nokungaphumeleli kweminye imizabalazo yazo njengalokhu kwabonakala ngokuqhubeka kwemikhawulo ebekiwe yokulawulwa kohlelo lokukhishwa kwemishanguzo. Imiphumela etholakale ocwaningweni ibonisa ukuthi imibutho yezishoshovu kumele iguqule amasu namaqhinga ayo ukuze kuvunyelwe ukuguqulwa kwezindlela-kusebenza ngokuthi kusetshenziswe amathuba avela ngenxa yokungqubuzana nobunhlakanhlaka obukhona ezinhlakeni zombuso ezihlukahlukene emazingeni ezifundazwe ukuze zikwazi ukufezekisa izinjongo zazo zokumela nokulwela izimfuno nezidingo zomphakathi. Ucwaningo luveza umbono-siphetho othi kunemikhawulo ecace bha enciphisa futhi ivimbele ukubamba iqhaza kwabantu ngoba phela izinsiza zemibutho yezishoshovu zingaba nomthelela emandleni nekhono lezishoshovu lokuqhubeka nokulwa kanye nokuzabalaza. Okuyinto ebonisayo ukuthi ukubamba iqhaza kuyinto eyinkimbinkimbi futhi okungeke kwathiwa noma kanjani izoholela ekufadalaleni kwemibutho yezishoshovu.