There is no one to blame here, we are all the same, whether man, whether woman, whether married, we are all spreading the virus. You cannot just blame sex workers for the spread. Even married men and women are spreading the disease.

Mirriam Mushetu, Lusaka

We need to talk business, not rubbish.

Chieftainess Mwenda

The virus continues to have a devastating impact in human terms

The stories presented here compellingly describe the devastating impact of the virus on individual women and men, the fear and denial at the initial stages; the consequences for relationships and for family life; the negative responses from many people and communities who fear those diagnosed positively; the challenge of revealing one’s status; the very significant fears around children and their futures and the continuing problem of ‘self-stigma’ which many Zambians have to tackle.

In contrast there are also stories of considerable courage, of family support and care, from mothers, fathers, siblings, care workers and support groups. There is growing evidence of a positive and proactive approach from many individuals and groups and considerable self confidence amongst those living positively.

I told my parents about my status three days after the results. It was more difficult for my mother to accept. She was very upset. As time went by, she gave me her support.

– Eve Lifuti, Livingstone

Everyone is at risk to HIV, especially those who are married. They are more at risk than any person. As for us who are not married, who just have sex with men, it is easier for us to tell a man to use a condom. In our culture, women have to submit to their husband. They cannot ask their husband to use a condom. If you are his girlfriend, you can say more, and you can tell him no!

– Theresa Mwansa, Lusaka

Being tested positive poses immense challenges to individuals, families and communities

Many of those interviewed highlighted the importance of publicly acknowledging their status and encouraging others to do likewise. They stressed the importance of getting others to go for VCT, the need to stand up and challenge stigma and discrimination and, in short, they exhibited the leadership so crucial to the effective tackling of the pandemic in future years.

HIV and AIDS concerns our own lives and those of our families, children and relatives lives. As soon as we don’t take it seriously, it affects the country as a whole.

Chiku Zulu, Chikankata

In the past, I used to fear HIV and AIDS. We all did. Now it is better that we go for testing. We did not know about it as there was no information. But now we know and we are not afraid any longer.

I found it very hard to interact with some people because they would say, ‘she is taking medication’, ‘she is positive’, ‘she cannot mix with us’. I stopped meeting with people for a while because I was afraid of what they might say.

Milambo Mugela, Mazabuka

Knowing your status and living positively is an important starting point

One strong message from the stories to whom almost everyone interviewed attached great importance was ‘knowing one’s status; going for VCT and dealing with its outcomes in terms of living positively, taking ARVs and looking after one’s health. They stressed the importance of peer education in this regard and the need to proactively encourage others to take up the services on offer. Some of those interviewed noted that telling others of their status provided considerable ‘relief’ and hope for the future.

They also stressed the crucial importance of early intervention and the significant danger of delaying seeking help.

People need to be open with their status. You will live freely. Being a leader, our president should go for VCT. He needs to lead. We as Zambians should not stigmatise ourselves.

Beauty Sialwinde, Mazabuka

Go right away to know your status. If you do not know your status, you are killing yourself. ARVs prolong your life. My daughter said to me that she heard people who are on ARVs will live another thirty years, so you will live until you are almost ninety!

Juliana Meleki, Livingstone

I did not feel too bad when I was diagnosed, because I knew people got better once they started taking ARVs. I was relieved because it gave me a solution to my problem.

Mate Imenda, Senanga

Many cultural and social beliefs and practices remain hugely problematic

Those interviewed made constant reference to continuing traditional practices and beliefs that impact negatively on HIV and AIDS. While women’s sexuality continues to be, in many respects, an issue surrounded by taboos and myths, practices such as Lobola, sexual cleansing, attitudes inculcated into young girls about men’s sexual ‘needs’ during initiation, ‘dry sex’, wife inheritance, etc. compound and extend the subordination of women.

However, many of the stories also highlight how this situation is being challenged by many including traditional leaders and that such practices are changing or being reduced in occurrence especially in some areas and provinces.

The attitudes and behaviours of too many Zambian men pose an immense challenge – to Zambian women and society

The vast majority of the case studies included here highlight what is perhaps the core issue as regards HIV and AIDS in Zambia – the continuing negative attitudes and behaviours of men as regards sexuality and sexual relationships in a HIV and AIDS context. Too many Zambian men, from all walks of life and location, consider it perfectly acceptable to have multiple sexual partners inside and outside marriage and stable relationships. They continue to practice behaviour which insists on their sexual ‘rights’ inside a relationship whilst also reserving the right to engage sexually outside that relationship. They continue to view, and treat, women as subordinate even when this threatens the latter’s health and well-being. Zambian society and aspects of its ‘traditional culture’ all too often views this situation as ‘normal’ and acceptable even though it continues to undermine Zambian society. The consequence of this situation for women is graphically illustrated in the stories presented.

Men have too much power. We have been taught to submit to men – we have been told, we cannot say no to sex. If your husband approaches you, whether you are ready or not ready, you have to say yes to sex. Women have no control over their bodies. You do not know how a man is using his body. You do not know how many partners he is meeting. But when he goes to his wife, she cannot refuse him. You have to let him do what he wants. He can bruise you, but you cannot cry out. It is like women are being bought to be sex machines.

Chieftainess Mwenda, Chikankata

Men come with two things, love and infection.

Regina Najandwe, Mazabuka

The subordinate status of women IS the central issue

It is impossible to avoid one central conclusion from this and other research and documentation projects undertaken – the continuing subordinate status of women in Zambian society is a major and over-arching problem in Zambia. It is difficult to see how effective intervention as regards the pandemic can be realised while women remain abused and oppressed in the bedroom, the household and the community.

Women do not have the power to say no to unprotected sex. Then the woman becomes pregnant, and the child becomes infected also. The burden of care falls on the woman. If a woman is found to be positive, and the husband is negative, he will leave. But if the man is positive, and the woman negative, she will stay.

Annie Matale, Choma

There is evidence of positive progress, especially in more recent years

Those interviewed made it clear, in many different ways, that progress is being made as regards the pandemic. The availability of VCT and ARVs has improved. Attitudes and behaviour towards those who are infected have begun to change significantly. Support networks and groups are on the increase. Brave individuals and groups are willing to acknowledge their status publicly and in this way provide crucial leadership and as a result, more and more Zambians recognise that being tested positive is ‘not a death sentence’.

…the consequences of HIV and AIDS are not as bad as before when there was much less information and little or no medication. Now, local people do not suffer as much and the death rate has been reduced. But, there are still those who do not wish to take drugs with inevitable consequences

Namakau Mubiana Liwanga, Senanga

…the Zambian government has given life. Previously people had to go long distances and pay for the drugs, but now they are free.

Sheela Hagila, Mazabuka

The availability of free ARVs is crucial but there are significant continuing issues

Person after person spoke of the life saving and enhancing importance of ARVs and how their appropriate use literally saved lives and significantly improved health and general well-being. Many spoke in graphic terms of the impact of ARVs on weight, rashes and infections, sickness and strength as well as the importance of overcoming initial difficulties in adapting to the medication.

However, many also spoke consistently of the significant difficulties in accessing ARVs. The costs associated with travel and transport, accommodation, availability at clinics and of the length of queues and waiting for access. They spoke of the difficulties for those who are sick or bedridden and of the need for improved outreach.

There are big challenges trying to reach people who are far away and stigma is still there in small communities, so people are not going for testing. They lack information. They need to be mobilised better for this.

Mutonga Muketukwa, Senanga

Support groups and networks play an important positive role

It is evident from the case studies that peer support groups and networks play a hugely positive role throughout Zambia. Many spoke of how they were encouraged, supported and accompanied by others from such groups especially as regards the initial steps associated with deciding to go for testing or to initiate an ARV programme. Some of those interviewed spoke of how they subsequently began support groups themselves to assist and encourage others.

And, again, women remain at the forefront as care givers, support workers and leaders. Their inner strength and forbearance are clearly illustrated in many of the case studies.

HIV and AIDS is a question of simple justice (and injustice)

Cumulatively, the stories gathered here illustrate the immensely heavy burden Zambian women carry in the context of HIV and AIDS. Any genuine ‘reading’ of these stories must conclude that the issue is one of existing injustice and the need for greater focus on the justice demands and needs of the issue. This question cannot be avoided.