Too poor to be treated: bottom-up advocacy by HIV+ activists in Khayelitsha and Lusikisiki, South Africa.
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Date
2021
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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.
Description
Doctoral Degree. University of KwaZulu-Natal, Durban.