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Our real problem is the stigma
Human rights and stigmatisation

Our real problem is the stigma

Evidence has shown that HIV is a manageable condition, but our real problem is the stigma. People are scared of being tested - they fear of being discriminated or rejected. In our work we train religious leaders and help them to spread messages of hope and life. For a long time the church had very judgmental messages and they responded to HIV in a very distracting ways, like saying that HIV is a punishment from God. But today we are able to say that HIV is a manageable virus, and the church is supposed to be involved in supporting people to get tested and if tested HIV positive, to get treatment. (By Phumzile Mabizela)

Still today disclosing the HIV status is a challenge

It was not an easy decision to disclose my HIV status. When you chose to disclose, you have to be ready to deal with the consequences, because people respond in different ways. Some people may judge you, some people may say you have been immoral, some people may think that you are promiscuous…I have been already working in the HIV and AIDS sector and I knew about HIV. When I was diagnosed in 1999, the first few weeks I was devastated and I was angry with God as well. But after some time I realized, that there must be a reason why I have the virus and that God has opened the door for me to warn and to support other people that they can live positively. Another reason to disclose was that I didn’t want to live in fear, because people who live in fear of being discovered, they lose their lives.They are constantly worrying about how their family will respond and how the church will respond. Therefore, I made a conscious decision to be open about my status and if people want to reject me it is their problem; it is their loss. But it took some time, I didn’t do it immediately. Slowly after one year I started disclosing my status to different people, groups and audiences.

The six “evils” in the HIV response

In our network we discovered rapidly that we have six evils that we are dealing with in our response to HIV/AIDS:

  • stigma,
  • shame,
  • discrimination,
  • denial,
  • inaction and
  • misaction

We have found that there are lots of pastors who mislead people. They tell them to stop taking their medication because they will be healed. This is very dangerous.We should be encouraging people to take their medication.We have a moral obligation as the church to tell people the truth and refer them to health centers that will give them the tools that they need to prolong their lives.

I struggle when pastors say they are against medication, as often they take their medication for high blood pressure, for diabetes or headaches, but still have negative attitude towards ARV. In my point of view this is ignorance, it’s because people do not know what these ARVs are and how they work in the body and how they actually suppress the virus, that people like me can live for a very long time.

(Not) Talking about sexuality

When we became aware of HIV, it was very much linked to sex and morality and that is why the faith-based community responded in a very negative way. But there is nothing negative about sex. Sexuality is a gift from God. All we need to be teaching is to be responsible and embrace and celebrate this gift in a responsible way. But we have demonized sexuality in the church. We are spiritual beings, we are sexual beings, we are physical and psychological beings. Why is it easy for us to talk about all the other aspects of life but neglect our sexuality? People are dying, because we are not talking about our sexuality openly. In addition, we are not talking about the different modes of transmission to teach people how they can protect themselves. I know that the church struggles with condoms and some pastors say that condoms are only used by people who are promiscuous.But condoms can save lives.

In traditional Africa, we had structures where we talked about sex openly. Young women were sent to older women and they were taught what sex was, how to behave and it was the same for men. But when Christianity came and all the other faiths, they destroyed these structures. Now the challenge for the church is to develop alternatives, where we talk about these issues from a faith perspective. But we are silent. The families are not talking about it, the structures are destroyed and the church or the faith-based communities are not saying anything. There is a lot of misinformation out there on sex and sexuality and its link to HIV.

This text contain excerpts from the interview conducted at the African Mirror TV Switzerland, 24th of May 2017. Revised by Mira Gardi, MMS.

How to break stigma

When I tell people that I have been living with HIV for 17 years, they look at me and think, not this one, she is lying to us. Because of the way I look and believing in God.Faith-based communities have support groups where people can share experiences and support each other. The reason why we have many stigmas, especially in the developed countries, is because nobody is talking about HIV anymore. You have medication and it becomes your own problem. I still need spiritual support. I take my medication on a daily basis, religiously I have a strong relation with God, but I still need spiritual support. The stigma will only be broken, if we in the church create safe spaces for people who are living with HIV to come together and openly share experiences and support each other. In our ceremonies we should be given people tools that they can use to live lives of faith or lives that emulate the lives of Christ. We need to create safe spaces for people, that they can share their experiences without being rejected.

Compassion is lacking in our churches. Lots of women are raped. These women have no choice and often they end up living with HIV. But when they go to church, the church rejects them. How does that person understand God’s love, and how does that person think about the concept of compassion, if compassion is not there in the church. If we can’t do that, we have failed the gospel. (Photo: Minnesota AIDS Project / HIV Stigma Stops Here / Twin Cities Pride Parade /Tony Webster/flickr, CC BY 2.0)

Referend Phumzile Mabizela is a passionate HIV, Gender and Human Rights activist. She has been with INERELA+ as executive director since December 2012. INERELA+ stands for international network of religious leaders living with or personally affected by HIV/AIDS.The core business is the eradication of HIV and AIDS related stigma. INERELA has about 18 African networks and five offices outside of the continent. She is a referend who is openly living with HIV. She is also a member of the Circle of Concerned African Women Theologians. E-mail:

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