Mamphela Ramphele

Southern African Journal of HIV Medicine

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5THE SOUTHERN AFRICAN JOURNAL OF HIV MEDICINE                                        SEPTEMBER 2005  H O R I Z O N SHIV/AIDS: THE MIRROR IN SOUTHAFRICA’S FACELet us open with Nkosi Johnson’s words of wisdom: ‘I want people to understand about AIDS – to be careful andrespect AIDS – you can’t get AIDS if you touch, hug, kiss, holdhands with someone who is infected. Care for us and accept us– we are human beings. We are normal. We have hands. Wehave feet. We can walk, we can talk, we have needs just likeeveryone else – don’t be afraid of us – we are all the same!’Why would an 11-year-old child have to make such animpassionate plea in the South Africa of 2000? Is this not asociety that has committed itself to the fundamental humanrights enshrined in the UN Charter? Is this not a society thatprides itself in adhering to the African value system ofUbuntu? Is this not a country with a government that hasexplicitly stated that its governance principles are based on‘Batho Pele’ (People First)? What has gone wrong?HIV/AIDS is a mirror in the face of our society. It forces us toexamine the contours of our face as it really is, not as wewould like to see it. Like any face, ours bears the scars of thepast, the impact of the realities of today and indications ofhow the future is likely to shape up for us. Let us take each inturn.HIV/AIDS and the pastThe old adage ‘the chickens are coming home to roost’ has aparticularly cruel twist to it for South Africa as a society. Thereare just too many chickens coming home to roost on ourfragile democratic edifice. We were dealt too bad a hand byhistory. Just think of the legacy we have to cope with whichhas contributed to our vulnerability to the HIV/AIDS pandemic.That legacy also undermines our capacity to address thepandemic decisively.First, the foundations of our society are built on conquest thatundermined the structure and socioeconomic fabric ofindigenous people and constrained their ability to adapt andevolve to meet the challenges of modernity. Adherence tocultural and customary practices that may be in conflict withthe values of science in areas where universally acceptedpractices save lives, might be seen as the only way to protectand defend the dignity of a wounded people. We haveelements of this way of thinking in our society. Second, the migrant labour system and its disruptive impacton family life over generations have undermined the dignity ofpeople housed in migrant labour hostels. This system is amajor contributor to the size and shape of the HIV/AIDSpandemic in our society. Denial of the rights of migrants todignified lives with their families made them vulnerable tosexually transmitted diseases. It turned men into conduits ofthe infection to their families.Third, the pressures of the struggle against apartheid and thebrutal suppression of the liberation movement forced manyinto exile. Life in exile made many vulnerable to contact withand infection by the virus, which had its early manifestationsin some of the frontline states where many of the heroes ofthe struggle lived. It is indeed a cruel irony that returningheroes should have been conduits of this deadly virus.Fourth, the illegitimacy of the apartheid state made itunwilling or unable to tackle the HIV/AIDS pandemic in itsinfancy in the 1980s when it could have been nipped in thebud. We know from experiences of much poorer countries thatimplementation of a comprehensive care and treatmentprogramme at a stage when the infection rate was lowcontained its spread, to less than 3% to date in Senegal, forexample.HIV/AIDS is one of the many costs of the legacy of apartheid.Apartheid was an expensive experiment. It demonstratedbeyond doubt that inequality is expensive, not just for thosediscriminated against, but for society as a whole.HIV/AIDS and the presentThe ideals we signed up for as a post-apartheid society areenshrined in our Constitution. The gap between those idealsand our practices as a society is large. Ours is a Constitutionsecond to none in enunciating commitments to thefundamental rights of everyone. The rights of the child.Equality between men and women. And the responsibility ofthe state to ensure that the basic socioeconomic rights ofcitizens are enabled.There are a number of reasons for this large and in some areasgrowing gap. First of these is the difficulty of overcoming theA highlight of the 2nd South African AIDS Conference wasthe first Nkosi Johnson Memorial Lecture, delivered by Dr Mamphela Ramphele. Nkosi Johnson, young man that hewas, warmed all our hearts when he courageously spoke outagainst discrimination at the World AIDS conference inDurban 2000. This lecture will be a consistent feature of theSA HIV Conference, to mark this young man’s role in riddingSouth Africa of HIV-related discrimination. Dr Ramphele, anotable academic, activist and fine South African, gave astirring and thought-provoking lecture that really set thetone for the conference. Unity and accountability demandsthat we take stock and examine ourselves critically andhonestly. It is our pleasure to publish the First Nkosi JohnsonMemorial Lecture as delivered on 7 June 2005.7legacy of inequality. Policy commitments are often notfollowed through into implementation, monitoring andevaluation. Much of the problem comes from the weakimplementation capacity of the government machinery at alllevels of government, as acknowledged by the President in hisState of the Nation address earlier this year. There are notableexceptions. Denial of opportunities for management trainingand experience in the past, and the failure to acknowledge andcorrect deficits since 1994, have left us in a weak position tolive out our commitments.Second, there is the ‘Shouting Silence’ that Xoliswa’sdocumentary speaks to. Xoliswa was moved by her personalloss of her own mother to the pandemic to document theharrowing lives of young people left to fend for themselvesfollowing the deaths of their mothers from HIV/AIDS. Theloneliness of children walking the streets in search of love andcare is forcefully brought home to us. The heroic efforts ofgrandmothers who come out of their retirement to becomeboth mothers and fathers to their orphaned grandchildren arecaptured sensitively in this documentary. We know of manymore poor women all over our country who are rising to thechallenge in the face of great adversity.But why the deafening silence from the rest of us? Why did wehave to be reminded by Nkosi to ‘care for us and accept us –we are human beings’? Where is Ubuntu of the whole societyin the face of the estimated more than 5 million SouthAfricans living with HIV/AIDS under the cloud of stigma?Where was Ubuntu when many of the 300 000 people whodied in 2004 from HIV/AIDS did so without the comfort ofloved ones because of the shame they felt? Where is Ubuntuwhen close to 1 000 people in the prime of their lives (15 - 49years of age) die miserable deaths each day, shielding from thesting of stigma that still pervades our society and constrainsour response to the pandemic? Where is Ubuntu when thecaregivers of orphans and vulnerable children are not able toaccess child support grants because of uncaring and corruptofficials? Where is Ubuntu when children are sexuallyassaulted by their fathers and other close relatives? Where isUbuntu when babies are raped in the vain hope of cleansinginfected men of HIV/AIDS? We are all challenged by the level of pain and suffering ofpeople living with HIV/AIDS and their caregivers to stop payinglip service to the values and precepts enshrined in ourConstitution. The quality of our society will be judged by howwe treat the most vulnerable among us. We are not at themoment doing well on that score.Third, part of the reason for the silence is our embarrassmentabout acknowledging the reality of HIV/AIDS, given its links tosexuality. We are a socially conservative society. All thecultures we bring into the new South Africa are prudish abouttalking about sex. We just do it. But we have to talk about sexas President Museveni of Uganda did, and made it part of theresponsibility of government officials to do the same. Captainsof industry and commerce must also step up and lead AIDScampaigns with the same passion they devote to profits. AIDSaffects the bottom line by undermining the quality of ourhuman capital. Combating HIV/AIDS has to involve acomprehensive approach that includes changing behaviours,including the practices that make men and women morevulnerable to infection. Fourth, the clash between customs that create a breedingground for sexually transmitted diseases, including HIV/AIDS,and the demands of combating the pandemic have to beacknowledged and challenged. Polygamy and multiple sexualpartners, inheriting widows, unprotected sex, non-sterileinitiation rites etc. all have to give way to safer practices. Thereis just too much at stake for us to let customs continue to putpeople at risk.Finally, there is a cruel irony in that of all African countriesaffected by HIV/AIDS South Africa has the greatest ability tocombat the disease, yet we are under-performing. Why? Howdo we explain Brazil’s better performance with more or lessthe same level of scientific proficiency and economicdevelopment? We have a serious problem of mistrust in oursociety that prevents us from acknowledging our problemsand using the resources we have to address them.Take the case of the causation of HIV/AIDS. Why did it take solong to have clarity infusing our policy responses? We havethe depth of scientific know-how and economic resources tohave been a front-runner in comprehensive care andtreatment and deal a mortal blow to the disease, as Brazil did.But the scientists were largely white, male, urban based, andoutside the policy-making domain of government. Mistrust ofthe racist system that denied the majority of South Africansscientific literacy and proficiency, constrained evidence-basedpolicy-making.To add insult to injury, the same racist system had overcenturies in many parts of the world stigmatised black malesexuality as dangerous and driven by uncontrollable lust.Unless we acknowledge the pain of those so stigmatised, weare unlikely to overcome our mistrust and build a better life forall. But those wounded by the past also need to transcend thepast and take ownership of shaping a future of dignity for all.‘The reconstruction of the soul’, as former President Mandelareminds us, is still unfinished business in South Africa.Scientists must stand up more and often to say no to thosebent on misleading the public. This is particularly important ina society with such low levels of literacy, numeracy andunderstanding of established basic scientific facts includinghow our bodies function. Confusing advice to those alreadyoverwhelmed by the trauma of HIV/AIDS should not bepermitted. The highest ethical standards should be upheld inthe care and treatment of HIV/AIDS-affected people and inclinical trials involving them.The medical profession needs to play the role of watchdog forpoor and vulnerable people. The South African MedicalAssociation should be at the forefront of the protectioncampaign. Silence makes all of us accomplices. How can weTHE SOUTHERN AFRICAN JOURNAL OF HIV MEDICINE                                        SEPTEMBER 2005  allow confusion between the role of specific treatment withantiretrovirals on one hand, and the benefits of good nutritionand supplementary nutritional agents such as vitamins for anyhealth care process on the other? It sounds so medieval.Remember the sanatoria of pre-industrial Europe where manydied of tuberculosis before the advent of antimycobacterialremedies? Remember that those early TB drugs too had toxicside-effects – but they were better than placebos? Toxicitydiminished with better drugs invented later with the benefit ofbetter knowledge. Why are we not drawing on rich medicalhistory to help our society cope with this present challenge?The way forwardThe best way of honouring the memory of Nkosi Johnson andmany other children who met premature deaths at the handsof HIV/AIDS is to end denialism now. Our democracy is overten years old now; we need to take ownership of shaping ourcountry’s future and create a better life for all. Blamingapartheid has its limits, just as blaming one’s parents for one’sfailures has its limits too. We need to transcend our past andbuild a better future by playing to our strengths andminimising our weaknesses.We need to promote a rights-based value system in oursociety at all levels. The President and his Cabinet should leadthe charge on this. No government official should be allowedto undermine the rights of citizens without being heldaccountable. Official acts of omission or commission andinstitutional arrangements that infringe on the rights ofpeople should be tackled urgently. For example, overcrowdedprisons and failing public services undermine what our societystands for.Education and training programmes for all public officials isof key importance, and public education programmes,including school-based ones, should be vigorously promotedtoo. Men need to be educated about the difference betweenmanhood and male dominance. Real men do not need toviolate the rights of women and children to assert theirmanhood. Women need to be part of the teaching andlearning of husbands, sons, brothers and significant othersabout gender relationships in a human rights culture. It is onlywhen a critical mass of citizens is confident enough todemand their rights that a human rights culture will flourish.In such a flourishing human rights culture, accountability ofpublic officials will be better enforced.We need to enforce the rights of citizens, especially thevulnerable ones. It is a sad reality that law enforcementagencies do not yet see human rights violations as a crime.Domestic violence is still treated as a private affair even as therights of women and children are violated. Recent reports ofthe epidemic of violence against women and children addurgency to this issue. Training and linking incentives toenforcement of rights is urgently needed in our lawenforcement system. There must also be penalties for failureto perform in this area. Those citizens who are enlightened have a responsibility notonly to demand their rights, but also to ensure that the rightsof the least in our society are respected and protected. Onlythen can we call ourselves a civilised country. Only then willwe have honoured the memory of Nkosi.MAMPHELA RAMPHELE7 June 2005

HIV/AIDS: The mirror in South Africa's face

https://sajhivmed.org.za/index.php/hivmed/article/download/581/718

HIV/AIDS: The mirror in South Africa's face

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