Brenda Musenga and the KUTUSA Ladies: fighting stigma and forging community as they go.

Published 22, Aug, 2017
Author // Rob Olver - Editor

Robert Olver in conversation with Zambian HIV activist, Brenda Musenga.

Brenda Musenga and the KUTUSA Ladies: fighting stigma and forging community as they go.

Brenda Musenga is a determined woman. I’d had a sense of that already from reading this story by Paul Shalala, about a group of young HIV activists who had adapted Kevin Maloney’s “Rise Up to HIV+” campaign for stigma-busting use in their communities in Zambia.

Paul’s story introduced and told a bit about each member of the group and what shone through to me at the time about all of them was their sheer determination not only to thrive in the face of adversity and ostracism, but to serve their communities and help them to thrive as well.

We all know that Africa has been hit hard by HIV but when we hear about Africa and HIV over here in North America it’s usually about numbers or policy, or both. Ciphers and statistics rather than people… lots of study results and that sort of thing. All excellent and necessary as far as it goes, but people are so much more inspiring than numbers and we need all the inspiration we can get.

And this was something different. This was a story of human triumph against very tall odds and I wanted to know more.

It wasn’t long after I read the article that Brenda and I became Facebook friends and I’ve found much inspiration in the course of our chats.

So I’d like you to meet HIV advocate Brenda Musenga.

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Robert: I found it very inspiring to see what you guys are doing with the "No Shame" campaign.

Brenda: Yes dear, we are trying, though it's very hard for Africans to really accept the HIV status or maybe open up. For some of us we have fully accepted it and want to see our friends feel the same happiness, coz I very much believe HIV is just a condition and complications are what kills.

And people create those complications.

Yes.

We know HIV is highly stigmatized in Zambia like everywhere else in Africa and I imagine this is probably particularly hard on women in terms of getting tested, treated, staying safe and so on.

Yes, you are right, even for me. I am still going through stigma even from my own family. I am on my own and that is making me strong to fight HIV. I do volunteer work. I go into the community to help the youths and children living with HIV. The rejection I have gone through is making me so strong. I help women and men to accept this HIV thing. I don't count the stigma coz I am strong.

It's great that you've learned to let it raise you up rather than force you down. You mentioned that at first you felt shame and that it was difficult then to disclose your status, even to members of your own family. Did you encounter much stigma when you did disclose? How were you treated?

Yes, thank you. I have a huge story about my HIV. My husband is late; he was in denial and stopped taking his medication. He died in 2008 and left me with three  healthy children. When I got married I was a virgin and we used to go for HIV tests every three months. The results were always both negative. After years in marriage, my hubby privately found out he was HIV-positive and stopped me from testing because he was scared I would find out about it. 

When I asked about it, he would answer me that "The doctor told us we are fine so baby don't worry." I believed him, and after I saw him losing so much weight I was troubled and one day came across the ARVs he was taking privately. I asked him and he told me it was tablets for energy which I believed coz I didn't know how ARVs looked.  The time came when I went alone  to be tested. I was tested and given the results that I am HIV-positive. 

I was tested Hiv positive in 2007, my husband died in 2008 and life has not been so easy for me and the children, I have gone through rejection but I am a strong woman and will  stand to fight HIV. I am stigma proof. I have disclosed my status to all. I don't regret ,I overcame the HIV shame and am very free and looking so healthy

When I knew my HIV status, yes, it was difficult for me to disclose to my family due to the SHAME and stigma that was around. I used to hear how some family members would talk about people living with HIV and to tell them that I was also HIV-positive was very hard.

Just after the death of my hubby I became so strong with HIV issues because I hated so much to see how my husband died. He was in denial and was over-depressed and later he died. I thought I should help others to accept and I called my mum and talked about it. She cried because she thought I would die there and then.

From the time I disclosed my status life has been so difficult for me. Yes, I faced stigma from some family members which is still going around to date. I have gone through rejection and no one in my family is happy about me going public, no one is happy with my community work.

So they would rather you'd kept it private. But now you go out into the community and you help women and children and youth living with the virus – that’s quite a transition from the isolation you encountered at first – can you talk a bit about how you got there?

I was staying with my elder brother because I had no home of my own. I gained courage and grouped women. We started a support group and named it KUTUSA Ladies (Helping Ladies). We basically focus on HIV issues. I also introduced a watsapp group for others who are outside town. We all agreed that we would also include men and children and that's what we are doing.

I walked up one day to a shanty compound within our city where I came across this community school full of orphans and vulnerable children. Most of them are on ART. With my friend Catherine, I go there every week to help children with Stop Early Marriages and to teach then to abstain from sex issues. This is a community school which needs a lot of help but it's difficult because we have no funds to support and motivate the children. I also came across a 19 year old boy who has been dumped by his mother. The boy is on ART and looks like he is 8 years old.

So you’ve really had to form your own HIV community as you go. To help combat your own sense of isolation, you started a support group focused on HIV issues; and how does your group support one another?

Yes, I felt isolated very much because I have been on my own and here in Zambia people living with HIV are stigmatized very much. That's why it’s difficult for some to disclose their status or even just talk about HIV. We are trying to help people come out and feel the same happiness. In our support group we help each other and learn from one another with health talks, we invite medical personnel to help and three months ago we had a fundraising brail where we met and raised funds for the group to help us reach out to some distant areas.

Is there any government funding available to you there to help your group to do the work it's doing?

Not yet we do it voluntary on our own ,

That's like us at PositiveLite. Is there a possibility that your group could get official funding?

The group is registered and possibilities are there.

And how did you first hear about Kevin Maloney and Rise UpTo HIV? Was it through Benjamin (Sakala)?

Yes I heard about Kevin Maloney and Rise Up to HIV through Benjamin Sakala, we are together with Benjamin in the support group

And you thought the No Shame In Being HIV+ campaign would be a good fit for Zambia and you’ve launched your own. Do you find it working as a way of reducing stigma?

Yes the No Shame in Being HIV-positive is working. A lot of youths are very free to put on the t-shirts. Benjamin Sakala brought the sample and we printed the few t-shirts. Youths born with HIV are very happy with it, but men are difficult.

I think this campaign and the U=U message together really can help to break down the stigma and fear people have towards people living with HIV. It means we can even have children and the children will be HIV-negative and that's HUGE!

Very true, I have lived with the HIV virus for over nine years, am still very healthy and all my children are HIV negative.

That is really wonderful. Is the U = U message and the knowledge that people living with HIV cannot transmit the virus if they’re on effective treatment getting out to the public yet in Zambia?

The U=U message is getting to people but a lot don't understand well. They are not very sure. Many people are afraid and so they don't get tested.

It sounds like a lot of education still needs to be done. Over here in Canada we are hearing service providers say that most of the women they see who come here from Africa really don't understand what the virus is and many believe that their faith can cure them of HIV. Do you see a lot of that sort of belief there? We have heard from our friends in other African countries that some pastors there are actively encouraging that belief and that because of it people are avoiding treatment or going off their medication.

Even here in Zambia it's there. Pastors are misleading people. Some are told to stop taking medication and after some time the patient becomes very sick and dies.

What do you suppose is the motivation of these pastors? It seems like a complete abuse of trust.

That's true. It breaks my heart because trust and belief should come from the heart and not from just being told by someone that this is the way it is.

And they are allowed to do this?

Yes. Maybe the government needs to pass a law. I can’t say much on this as I might offend some big officials. Some people have died for that.

Brenda, will you get into trouble if I publish any of this? The level of stigma seems very high and I don’t want to put you at risk.

There is no trouble Robert, I’ve just talked about what I’ve known and have seen. I have not insulted anyone. I am okay, though even my family don’t talk about it, as I believe HIV is just a condition. I feel great when I talk about HIV in the community because my vision is to help the people infected and affected by HIV. To help them have a positive mindset about this HIV thing and help them to an improved quality of life. I feel great when I help one or two to accept their status.

Again, thank you for chatting with us, Brenda. I think you and all the others are incredibly strong and brave and I hope it will help if more people know about the fantastic work you’re doing there.

It will, so much.

About Brenda Musenga: Brenda is a Zambian HIV advocate. Having lived with HIV for over nine years, Brenda has come to fully accept her HIV status and now considers herself "stigma-proof."  Together with "The Kutusa Ladies" (Helping Ladies), a support group which she founded, Brenda now goes into the community to educate and support people living with HIV.

About the Author

Rob Olver - Editor

Rob Olver - Editor

Robert W. Olver is a former education worker with an alternative life in experimental music. Currently retired and living in Peterborough, Ontario, he is a gentleman of leisure and the friend of all cats everywhere.

On October 14 2015 Robert  celebrated the first anniversary of his HIV diagnosis. Yes, that’s right. Celebrated.

“It was given to me just after my birthday and just a few days before I was to retire. I felt a bit overwhelmed initially but there’s nothing like a crisis to help you sort out what’s important to you. Let’s just say I found myself needing to revise some of my plans.

A year on, I find much to celebrate and I’ll be blogging to explain just what I mean by that and lots of other things as I navigate this journey".