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The challenge of AIDS means rethinking established certainties and needs innovative solutions
Noerine Kaleeba, a well known AIDS activist from Uganda, recently told the story of how her mother produced the photograph of Noerine's primary school leaving class of 45 pupils and asked her “where are they now?”. Five are still living. Forty are dead, the majority from AIDS. Other Africans tell similar stories of losing four or five of their siblings, friends, parents, and partners and of having to cope with rapidly increased families by taking in orphans. There are many other horror stories of the African epidemic—households headed by children, abandoned children, rejection, stigma, discrimination, racism, and the abuse of human rights due to AIDS. Perhaps President Mbeki was right when he asked “what is unique about African AIDS?”.
What is unique about HIV/AIDS in Southern Africa is that the epidemic has moved on a scale that is unprecedented in disease. It has cut its way through the fabric of society and left a bewildered population, governments in denial, and levels of pain and suffering that are impossible to describe or measure. It has prompted a reaction from the world's media of a continent sinking under the burden of disease, of villages being wiped out, of despair and devastation. As such many of the racial prejudices about Africa are reinforced: that it is a continent unable to develop or to help itself; that governments are corrupt, ineffectual, and inefficient; and that the people are uneducated, superstitious, and culturally locked into old and mysterious beliefs.
In this reading AIDS is easy to understand. It feeds on countries that are unstable. It feeds off poverty and it feeds off a community in which sexual behaviour is unregulated and in which social norms and values are lacking. And in this way explanations are simplistic and easy.
This is one reading of the epidemic. But many people in Southern Africa are grappling with the paradox of having very aware populations with regard to knowledge about HIV and AIDS, but in whom behaviour change is difficult to bring about. They are also grappling with the issues of persuading people that HIV and AIDS can be challenged and can be addressed.
Part of the difficulty for people working on AIDS in Southern Africa lies in the political context in which the campaigns are being fought, In Namibia, Zimbabwe, and other countries the homophobia of the leaders does not help. Nor does their denial of the extent and magnitude of the disease. The questioning by Mbeki of the links between HIV and AIDS has in many ways been disastrous. The ongoing racism that insists on seeing AIDS as a “black” disease and caused by “black cultural practices” fuels the denial.
The failure of high profile politicians to take on AIDS as a serious developmental, human rights, and social issue shows the terrible lack of leadership in dealing with the epidemic. The failure to take creative steps to supply drugs highlights a failure worldwide to care.
It is as if Southern African society is acting outside of itself, looking on in silence and amazement as the epidemic takes its hold. It is looking on in the classic way—that this is firmly a disease of “the other”—other people, other families, and other countries. Looking on, in much the same way as does the West. Visitors to Southern African states remark upon the incredible AIDS silence—very few public campaigns, limited billboards, limited press coverage, and silent populations. We are watching one of the truly remarkable events of our time—an out of control epidemic and a response that is almost mocking in its passivity.
But what then could be done? Is it too late to turn the region around? Is it still possible to save families, to save communities, to care for and protect orphans, and to give the ill and dying the quality of care they need and the dignity and respect they deserve?
HIV/AIDS is challenging us in Southern Africa to rethink many of our safe and established certainties. We need to rethink the construction of families. We must create new families—families that will not, necessarily, be headed by two parents. We need to rethink our understanding of community, and our perceptions and expectations about housing and care. We are being forced to rethink how we should be structuring education—how does an education system at all levels survive an epidemic of this duration and magnitude where over 25% of its teachers are infected and over 35% of its learners come from families coping with HIV and AIDS? How do we offer a working and an equitable health system, with high levels of infection among health care workers, find the gaps for antiretrovival drugs, and the introduction of mother to child transmission.
How do we care for a population in which over a quarter are dying before they are 50 years old? How do we create a society in which the life expectancy has dropped below 45 years of age and how do we begin to understand a statistic that says that 50% of the current 15 year old boys in Southern Africa will not turn 50? How do we move to protect the rights of children, families, and people living with HIV and AIDS and its effects?
How do we plan for a society with very large numbers of orphans and households headed by children? How do we contemplate a future in which nearly half of the children will reach adulthood with little or no experience of being parented? Can we morally accept households headed by children, and placing orphans in (over) extended families as being a better option than pursuing new ideas about communal housing, care, and support?
Fundamentally it is challenging us to rethink our morality and our values. Southern African societies do not talk easily and openly about sex. They are judgmental and AIDS related stigma and discrimination show limited signs of easing. We claim that we cannot effectively teach people about the real issues of HIV and AIDS because it is too sensitive and too many people cry for a return to moral values. Values that, in many cases, exist in name rather than in action.
In doing so we are not acting to save lives. In Southern Africa now the greatest moral imperative is to save lives and this must force us to take serious action on protection, care, and support. We must face the fact that we are largely a dishonest society and it is this dishonesty that is pushing the failed response to the epidemic.
Saving lives means that we need new images, new pictures. We need to reposition AIDS in a discourse of hope and possibility. We need to ask new questions and our solutions need to be creative and innovative. In this sense AIDS offers tremendous possibility and scope. Instead of focusing on how the disease is destroying the region, pulling the continent down, and creating images of despair and no hope, we need to talk about how the epidemic gives us unprecedented hope to create new social, communal, economic, and political structures.
It offers new ways to look at human rights and equity, new avenues to look at the constructs of gender, oppression, sexual expression, new ways of seeing an economic future, of political courage, and of finding ways for Southern Africa to live through and beyond this epidemic.
It allows us to rethink education, healthcare, how we care for children, and to find new ways to house people, teach them, nurture them, and give them a future that will be optimistic, positive, and new. It should challenge the rest of the world to stop seeking to see Southern Africa in terrible, hopeless images that serves their emotional needs but not the needs of those living with HIV and AIDS in Southern Africa.
But to do so requires courage—professional courage as we reassess how we feed into and fuel the responses and prejudices and personal courage to challenge the politicians' passivity, denial, and failure to act. We need courage to speak about a new vision, hope, and strategy that is not based on making the status quo more manageable, but is based on fundamental social change.
This is not to deny that there will be terrible pain as we live through this epidemic, and that there will be suffering and despair on a scale never seen before. But we can only cope with these levels of grief and these high levels of death if we understand that we can create a better future. People living with HIV and AIDS are ill served by images of a dying continent. The greatest way we can pay tribute to them is to take their illness and despair and to channel it into the vision of a new society. In doing so we take away the stigma, blame, prejudice, and the abuse of human dignity and instead link HIV/AIDS to the possibility of a new society.
Behaviour change will come when the disease is replaced in the realm of hope in which there is a real vision of a future. It will not come when Southern Africa is portrayed in images of death and dying. This new vision must be the domain of professionals and of lay people. Without this vision HIV/AIDS in Southern Africa will take the path that is being mapped out for it. With this vision we can take a new road that leads us to a truly transformed society.