Global History of HIV/AIDS Activism

Charity Nyirenda is a London-based HIV activist and, among others, a co-author of Our Stories Told By Us, a book which highlights the African contribution to the HIV response in the UK. Interview with Nikolaos (Nikos) Papadogiannis, April 2025. #Africa #UK

Nikolaos Papadogiannis: How would you like me to address you, please?

Charity Nyirenda: Oh, you can address me as Charity. This will be my first time using the pronouns. I think I’m a she. Is it she/her. I’m a heterosexual woman born woman. I was told I was a woman, a female.

Nikos: I would like to ask you about some key moments of your involvement in HIV groups, like Positively Women, for instance, or Catwalk4Power .

Charity: Okay. Let me start with Positively UK, formerly known as Positively Women. I was a service user there. And then later, I started volunteering as a case worker for maybe, I think, five years. I can’t recall. I think it was from 2007 to 2011. I stopped because I wanted to have a break. Becausemy medications were affecting me and I became depressed. And I think it was also because of immigration, I was not allowed to work. But for me, the volunteering part helped me a lot. I can also say I still volunteer once in a while with Catwalk4POwer.

So on the Catwalk4POwer, they like me to be a creative person, which I enjoy so much. So I can say, taking part in a Catwalk4POwerand Joyful Noise. There are two separate things. Joyful Noise is a choir for people living with HIV. So I’ll say taking part in Catwalk4POwer and Joyful Noise has been deeply empowering and transformative. And then,  both spaces gave me permission to show up fully as a woman activist and creative with a story to tell.So with the Catwalk4POwer. Stepping on the runway wasn’taboutimage. It was about reclaiming space, telling my truth without apology. Each work felt like a declaration. And I’m here. I matter. And then, it was a space wherework becomes power. Andwhere community lifts you up.

And in the Joyful Noise choir, I found another kind of voice, one carried through song. One of the most powerful moments for me was when we performed, ‘Read all about it’, by Emeli Sandé, at Britain’s Got Talent. And, you know, singing that surrounded by others who carry their own stories of survival and resistance was emotional. That song speaks of the courage it takes to speak up. And it felt like we were singing not just for ourselves but for all those who have been silenced.

And then there was the incredible experience of performing at the Hurlingham Club, where we met Prince Harry, to stand in a choir of women, men and LGBTQ voices united in a song for healing and justice. And then to have someone from the royal family and other royals, and these other royals were fromLuxembourg. The princesses were all there. And to witness andacknowledge it. It was powerful. It reminded me of what we do, and that the stories we carry matter at every level.

So both Catwalk4Power and Joyful Noise have been have empowered me to keep speaking, singing, standing tall, not just for myself but for others too.

Nikos: How important have art forms, like songs from Africa or stories, storytelling from your country of origin, but more broadly from other African countries as well, been for your HIV work in the UK?

Charity: Oh, those have been great. Sometimes, you know, we, I, personally, I would say about me, that’s where I like listening to them. I like going, if there’s an African event somewhere or a museum, there’s some art coming involving Africa. I like going to see them. And then that helps me sometimes because I’m a creative person. So that helps me as well because, you know, when you see something, it inspires you, and then you get that idea, and then you make your own thing because you’ve seen that your culture or another African country’s culture, and then you put it together. I think it has helped me do what I like as well.

Nikos: Are there any specific songs that you like from Africa?

Charity: Oh, there are so many! Some of them I don’t know, their titles. I think most Africans like the the beat from Congo. Now, nowadays we are more like we have all these afro beats from all around Africa. I cannot specifically choose one song, but I’m saying that it’s because I don’t remember their titles. I just like the beat, and I would just dance to it. Yeah.

Nikos: So did you dance to songs from Africa in your HIV work?

Charity: We used to dance when we were having Christmas parties with PositivelyUK. I recall that we would dance to those, and then we’d be asked to choose our songs from wherever you come from.You choose your song, they play it. In Joyful Noise we only sing English songs. We’ve never attempted to sing African songs.

Nikos: Can I ask you about your work with NAZ?

Charity: My work with NAZ, it all started with a choir. I was a service user as well with NAZ, I was a service user as a choir member in 2013 or 14. I couldn’t sing at all. I only know humming. You know what I mean? I couldn’t sing. And then this choir, it was more about our health. It was just us to have our own space. We didn’t talk about HIV. We did not mention anything because we just wanted our own time. We just sing, and through singing, that brings out emotions, tears, happy emotions and all sorts. It was a nice space to be in. I think they do a great job. Because I think they fight stigma. I was a service member from 2013 to 2017, because I was still not allowed to work at this the whole time. So during that time with the choir, I was also volunteering with the choir as a peer mentor or something like that. I was the one calling everyone. And then in 2017, I had a chance to work for them. So I had this contract, I think it was a 3 or 4-year contract. So I was a peer mentor coordinator for two projects. So the choir and the other one in somewhere near Heathrow. And then the pandemic came in. I’d only worked for a year or so. And then the pandemic came in and I was made redundant because there was no funding. They stopped the funding for both projects. It was difficult. But I still go to choir once in a while. When they have funding, they call us. We go and have fun, uh, singing. We love singing.

Nikos: May I ask you now about your involvement with ZZUK?

Charity: Okay. Let me be careful. We are five of us. We all met through peer support. But at different stages. I think we are all born in Africa. We all came to UK.I’ll just say I am fortunate to be part of a close-knit group of five friends who I met through peer support at different charity organisations. All of us are women living with HIV, and born in or spent our formative years in Africa before moving to the UK. For various reasons, our stories all start from our early years of living in different African countries and moving to the UK. ZZUK was away of our own peer support, especially during the pandemic. That helped us a lot because we were meeting every weekend.

And on another note, because one of us was unwell, so it was a difficult time. And then we were lucky that she’s here and we carried on meeting on Zoom. And then we somehow we decided to have a photo book. Why can’t we make a book?

Before that, we were selling things. I was making things. Book covers, bookmarks, cushions, all sorts. And then if there’s a pop-up market, we would take our things there and sell. And I remember when we made good money. We just spend it on us, like go to a restaurant and treating ourselves nice. It was just for fun.

And then, like I said, we put together a photo book together as a fun project for ourselves. However, Winnie told us about this interview she had done when she was asked about how African communities were commemorating forty years of HIV. She said, “She didn’t know but felt she wanted to do something about it”. That is when she came to us and we decided to put together the kind of book we would like to see and read.  And we’re like, ‘We’ve never written a book in our lives.’ Oh, maybe Angelina did write a book, when she was young, I guess. And so from there, during the pandemic, we started. So, as they call me a creative director, they asked me to design the book. So in the context of our book, Our Stories Told By Us, we emphasised the importance of the connections. So each story shared within its pages and illustrated how our collective experience shapes our Identities and strengthens our communities by sharing our narratives. We not only validate our own journeys, but also create pathways for others to find their own stories.

My involvement was in this project was to create the design for the book and I  felt an immense passion for it. I remember having so many ideas running through my mind. This project became an opportunity to honour our heritage. Our journeys as Africans and our contributions to the HIV response in the UK.

Some of this is reflected in the book. I don’t know if you’ve seen it yet, but let me talk you through. We wanted the book to feel bold and vibrant, full of colour and life. For me, the natural choice was to use African fabric.

I chose designs that tell a story, because in this book every art work carries a meaning. If I’m honest, at first I thought I could simply go to the shop and pick any beautiful African fabric. But for the first time in my life I began asking deeper questions: Do fabric have stories?

So I started searching for fabrics with meaning. It took months and months. Often I couldn’t find what I was looking for. Then one day I saw this fabric and I thought, that looks interesting.

I told the shopkeepers, “I want the ones with names- to the plain ones.” When they explained the meaning behind the designs, I realised it was my lucky day. I said “I need that fabric.”

This Blue and Yellow fabric Tsunami, symbolises how HIV impacted our world, but also how our communities have rebuilt themselves – stronger and more resilient.

So this tree is a pattern from Cote D’Ivoire called Grotto. It represents social reconciliation and recognition.

Each leaf tells a story of our strength, our growth and our unity as we face stigma. You might notice that the tree looks a little rough. I wanted it to feel that way, because we are not perfect – just like the tree is not perfect.

Each leaf represents a person in the book, every story and journey.

And if you look here, you will see three birds. The symbol is called Ahenfei. It represents a home or Palace – a place of family, community and support.

The birds sit together at the centre, showing how people come together to form a community that supports and protects one another.

Just like in our communities, Strength comes from many people coming together. The pattern surrounds the birds almost like a protective space, reminding us that home and community are built piece by piece, person by person.

Nikos: So that’s the Palace, and the birds represent the family?

Charity: Yes. You might also notice in the book that fabric looks like it has been torn and stitched back together. I did that intentionally because I didn’t want it to look prefect.

Our community is not perfect. We have our struggles and our mistakes, but we still come together and support each other. It reminds us that community is not about perfection – it is about people coming together and holding each other up.

Charity: And here you will see the map of Africa. Do you see the Red Fabric?

Nikos: Yes

Charity: That fabric is called Afe Bi Esan. I used it on both map of Africa and the UK map.

For me it represents the highs and lows of our journeys and the way we continue to move forward even through difficult times.

In Ghana this fabric is often used at funerals, but it can also be worn to celebrate life. I chose it because HIV has taken so many lives. Millions of people died from AIDS and this fabric helped me reflect both grief and remembrance but also resilience.

I wanted it to represent the journeys you see throughout the book – the steps we take together.

On the map of Africa, I layered another fabric on top of the Afe Bi Esan fabric. This fabric does not have a specific name, but I chose it to  represent movement – the idea that we are all travelling through life in different directions until our journeys meet somewhere.

You will notice these flowing lines across the fabric. For me, they represent the journeys we take in life – sometimes difficult, sometimes hopeful – but always moving forward. They remind us that our journeys may be different, but they are all part of the same story.

Charity:You may also notice this small Grey patch of the UK map. For me, this represents London and I like to think of it as an Imaginary River Thames.

London is where many of our journeys have crossed and where many of our stories meet.

It is a place where people from different parts of the world come together.

So this small grey space represents that meeting point – the place where our journeys connect and where many of the stories in this book continue to unfold.

Around it you will also notice these flowing lines across the fabric. For they represent the journeys we take in life – sometimes difficult, sometimes hopeful – but always moving forward. They remind us that our journeys may be different, but they are all part of the same story.

Charity (closing): In the book there is also a continuous line. It begins from the roots of the tree and travels through the pages, connecting every story.

For me, that line represents our connection –reminding us that even through different journeys, we are still together.

So that is my involvement in the book.

And for me, it is a reminder that struggles and our resilience are all part of one shared journey.

Nikos: May I ask you about something else, please? About your influences from other groups in Africa, Europe or America, like Act-up or Treatment Action Campaign (South Africa) or TASO (Uganda)?

Charity: That’s the question I was scared of!

Nikos: You can skip that if you would like.

Charity: I have attended a few ACT UP events, but I wouldn’t say I worked directly with them. Before that, I didn’t really know much about these groups.

It was through spaces like NAZ Project and also through Positively UK ( Catwalk for Power) that I began hearing more about ACT UP and their activism. Some of the women involved in Catwalk for Power had connections to that history and they shared those stories with us. At first, I remember hearing the phrase “ACT UP” and thinking what does that mean? I didn’t realise it was an activist movement.

But once I learned about the work they did, demanding treatment, speaking out and fighting for people’s lives – I realised how important their activism was. If it were not for those kinds of movements pushing for treatment and change, many of us would not be here today.

Nikos: What about activists from Southern African countries? Like the Treatment Action Campaign from South Africa?

Charity: I think many African communities were deeply affected by HIV and because of that they developed very strong community responses. People supported each other, organised themselves and created groups to fight treatment and care.

Nikos: I don’t know if you would like to mention anything we have not discussed so far. Anything you would like to add about HIV activism ideas from Africa?

Charity: When I think about activism ideas from Africa, I feel that in many ways African communities became very advanced in responding to HIV, because the epidemic affected them so deeply.

People were hit very hard and because of that they began supporting one another in very strong ways. Communities organised themselves, formed groups and created their own responses to the crisis.

I also remember when I was volunteering with Positively UK formerly known as Positive Women, we learned about an initiative from South Africa focused on supporting mothers. That idea inspired training that we later implemented here as well.

So there has always been an exchange of ideas. Sometimes ideas start in Africa and then organisations here try them as pilot projects. If they work, they continue and grow.

So there has always been learning in both directions, across countries, communities and movements.

Nikos: Thank you. Thank you so much, Charity, for our discussion!