Texts for Translation 2007:
  Edwin Cameron

AIDS

Extract from: 'Witness to AIDS'
(Tafelberg, South Africa, and IB Tauris, London and New York City, 2005), chapter 8

AIDS is only one of Africa’s current adversities. There are also wars and bloodshed and famine and oppression. And Africa’s adversities are only part of a perilous world in which excess of power (to often driven by religious extremism; Christian, Muslim and Jewish) creates injustices that quell human flourishing.

But amidst all these others AIDS is an important adversity, important morally and practically and socially, because it tells us so much about ourselves and about our other problems. Our responses to a sexually transmitted disease that is potentially fatal show us how much the facts of sex and death still provoke fear and flight, rather than understanding and acceptance, in our cultures. Our responses to a disease whose greatest impact is now on poor black Africans tell us much about our attitudes to poverty and to race.

AIDS over the last twenty-five years has cast a sharp light on medical practice, scientific discovery, government power and extra governmental activism. It has led to an irreversible shift in the relationship between medical science and the public, changing the way in which consumers and wielders of medical and scientific knowledge see each other and deal with each other. The consumers have made significant gains, from which we have all benefited. In western societies, patients have more power, more knowledge, more assertive courage, more dignity, than before the epidemic.

AIDS has also raised fundamental questions about corporate profits and the exploitation of knowledge in the public good; those who claim to use exclusive legal license for the pubic benefit must demonstrate that they are truly acting in its interests. If not, they deserve our wrath, and their privilege of exclusivity should be revoked or its extent curbed.

In Africa, too, AIDS has changed the way we see the responsibilities of corporations in reacting to poverty and illness. The struggle to end denial of AIDS treatments to Africa’s millions was necessary because the initial position of corporate leaders and shareholders in the west, backed by their governments, was simple; they were entitled to exact maximum profits on their medications in western market conditions. Yet those conditions systematically excluded Africa from fair access to the very same markets, while systematically depriving it of fair compensation for its raw materials and labour. Africa’s poverty is no doubt in part attributable to the greed and short-sightedness and folly and hubris of some of its leaders. But in much larger measure it is an outcome of a history that the west has imposed on Africa, and a present the west continues to impose on it, through a world economic order that deprives its peoples of opportunity to participate with dignity on terms of just equality.

We live in a contorted world, where dome – including myself – live in relative affluence and comfort, our health secured my medical attention and access to care and treatments. Others live in grotesquely contrasting poverty, deprived of the essentials of life. Is this a ‘natural’ order of things? Before the AIDS epidemic it was easier to think so. Those living in affluence often do not see, still less have any contact with, people suffering from preventable illness, avoidable hunger and remediable destitution. Or they think of them as less deserving, or of their condition as self-inflicted. Certainly they acknowledge no functional connection between the prosperity of the West and the impoverishment of the rest. Distance, ideology and the inevitable frailties of human understanding and connection help maintain comfort.

But AIDS has helped pierce the insulation. The epidemic’s proximities and juxtapositions have brought the inequalities of the developed and developing world closer than comfort can warrant.
In the affluent northern hemisphere of the 1980s, the public witnessed tens and hundreds of thousands of gay men suffering and dying, gay men who fought with passion to re-order human structures and attitudes and policies that denied them dignity and treatment. Their struggle was unexpectedly, abundantly rewarded. Treatment arrived: and the wealth of the developed world reduced their death and suffering to a fraction of what had gone before. Now in the 1990s and the early 2000s, the world witnesses poor black people in Africa dying of the same conditions. The same viral particles. The same physiological effect. The same symptoms. The same suffering. The same ghastly, lingering fleshly surcease. Only different countries, different colours, different people. For too many it had to begin to seem intolerable. And unnecessary. The drama and horror of the epidemic began to bridge the imaginative distance between the way ‘we’ can live and the way others must live.

The claim of ‘entitlement’ underlying drug pricing and availability encompassed a protective moral comfort, a defensive ethical shielding, that had to be stripped off the positions and individuals they sheltered. Those claims endorsed as axiomatic propositions about the replication and use of human knowledge that in their application to Africa’s epidemic were demonstrably outrageous. But the demonstration had to be made, gruellingly, and the change was (and sometimes still is) fiercely resisted. The exponents of the self-entitling propositions had to be exposed to public view, and their defences had to be subjected to public censure, the laws and policies and practices they supported humanely altered.

The rank immorality of the notion that tens of millions of poor people should be denied access to available medications because of limitations on the use of human knowledge had to be pronounced; and the opposition to the immorality had to prevail. And the successful assertion of the counter-view had to be carried through into practical effect. That last was and remains the most important task.

That process is still occurring. On its successful completion – on the practical implementation of what one writer has called ‘the most extensive humanitarian venture in human history’ – depends many millions of lives.

AIDS has cast unremitting light also on the influence and power that governments and leaders wield in Africa. Some leaders – on countries like Uganda, Botswana, Kenya – have responded to the grief and devastation of the epidemic with the resolution to include it in their plans for daily life. They have sought to ‘normalise’ the epidemic. They have done so by speaking about it, by getting others to speak about it, by including it as an elementary and ever-present and rightly obtrusive part of their policies and proposals and practices.

Others, including those in my own country, have struggled to accept that a virally borne, mostly sexually transmitted, epidemic of suffering and death confronts us. They have sought to blank out an anguish that is too hideous to bear, yet has proved too encompassing to ignore.

In South Africa, a challenge to the medical science of AIDS that sought to defend the humanity and dignity of Africans led instead to a tragic delay in concerted action during which many African lives have been lost amidst hideous individual suffering. A resistance to conventional thinking that was meant to def crass stereotypes about African sexuality led to a moralising re-emphasis on sex and sexuality that in a practice served to inhibit behaviour change – just as workers were struggling to help those at risk to deal rationally and autonomously with the sexual and social roles and responsibilities and vulnerabilities that sour the epidemic. Stigma and denial were unexpectedly enhanced. The consequences have been devastating.

AIDS has pitched our continent into a vast agony of mourning. Every family, every workplace, every sphere of every human organisation in central and southern Africa has felt the epidemic’s seeping of strength, its obtrusion of ghastly and disfiguring symptoms, its premature bereavements, its copious and often untended product of parentless young. And many of us, too may, have reacted mutely. We have responded to the epidemic with silence; and our doing so has rendered it and those who suffer under it unspeakable. We have too often placed those suffering the effects of the virus beyond the reach of our embrace, beyond word and comfort and help and remedy.

But we will not be whole as a continent until we have lived and fully held and endured and dealt with the total largeness of the calamity that the disease has brought upon us. Our country will not be whole until we have sought to understand and have confronted and dealt with our own fears and failures and denials in dealing with the epidemic.

I know that I have AIDS. I know it every day, every hour, in my working and thinking and playing. I feel it as I take my tablets twice a daily as I wait with repressed but still perceptible anxiety for my doctors call after my twice-yearly blood checks, when I watch heart in mouth for news of fresh breakthroughs in viral knowledge and treatment that may hold benefit for me and others. I now it too when I see increasing numbers of gaunt, energyless fellow South Africans who lack the access and benefits and protections I enjoy. I know it when I hear of friends and acquaintances who, too fearful to be diagnosed and treated, withdraw wastingly, wastefully, from help and health because we have not invested them with enough belief in their own power to live and to be loved.

I carry in my now, a memory like blood, the shock of my own diagnosis, the long years of muteness and secrecy, the fear of fleshly failure, the allies I harboured and nurtured within of the stigmas and hatreds outside. I know that I have AIDS. It is not just that I refuse to forget, it’s that I cannot. Remembering is in me, like blood.

And yet my days also have sun and food and energy and fun and work and friendship and family and hope and challenge and belief and happiness. I feel joy to be gainfully occupied within a large, ambitious and improbable project – a journey of transformation that beckons South Africans beyond the demeaning structures within which our history sought to confine us. I feel joy to have life in a country and a continent where human life started, where human life continues and where human life can flourish more fully if we believe enough in our own capacity to achieve it.

We cannot escape our grief or the losses we have experienced or the suffering that has been. But we can act to minimise those occurring now, to prevent further deaths, to open our hearts and hold in them those who, now, are afflicted with illness and its isolation. Our grief is there. It is continent-wide, pandemic. But we cannot allow our grief and our bereavement to inflict a further loss upon us; the loss of our own full humanity, our capacity to feel and respond and support. We must incorporate our grief into our everyday living, by turning it into energy for living, by exerting ourselves as never before.

AIDS is above all a remediable adversity. Our living and our life forces are stronger, our capacity for wholeness as humans is larger that the individual effects of the virus. Africa seeks healing. That healing lies within the power of our own actions. In inviting us to deal with the losses it has already inflicted and more importantly, in enjoining us to avoid future losses that our own capacity to action make unnecessary, AIDS beckons us to the fullness and power of our own humanity. It is not an invitation that we should avoid or refuse.

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