Global History of HIV/AIDS Activism

Memory Sachikonye 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: Let me start by asking how you would like me to address you.

Memory Sachikonye: My name, Memory, is just fine. I’m a woman. If you have to use pronouns, I’m she/her.

Nikos: Thank you. So I would now like to move to my next question about some key moments in your involvement in HIV work, like in Positively UK or Umoja if I’m pronouncing the latter correctly.

Memory: That’s correct. Yes. So, Positively UK was my first stop after my diagnosis. I had no idea about what this diagnosis meant. Having been diagnosed with AIDS at the time, I just thought I was going to die. But because I had gone to the clinic with a relative who was accessing Positively Women, it used to be Positively Women at the time, and she was like, ‘no, you go there [to the clinic], you’ll be fine’. So, when I eventually met the consultant [at the clinic], he gave me a referral letter to Positively Women. Being diagnosed in Zimbabwe, where everyone was dying, was quite scary. So, all I could think of was of myself going back home in a coffin, dead.

When I went to Positively Women, I keep calling them Positively Women because that’s how it matters in the story, I was still trying to deal with the news of the diagnosis and trying to think about when I’m going to die. I went in and I was asked to wait for a caseworker, somebody who was going to look at me and support me. I waited there to be registered as well. You have to be a registered client to be able to access the services there. So, when I waited, a woman came to me. She’s an African woman from Uganda who looked so glamorous. And I was there, still struggling with the side effects of my medication. I was thin, I think I probably weighed about 50kg at the time. Don’t ask about my weight now! So she, like, walks in and she says, ‘Oh, hi, my name is Esther [pseudonym]. Well, come in. I’ve been living with HIV for 17 years’. I looked at her. You know, when somebody with their makeup. That was perfect. Nice, beautiful, fitting clothes, everything about her was like, wow! And I’m like, ‘Excuse me?’ She says, ‘Yes, I’ve been living with HIV for 17 years’. I’m like, ‘How?’ She replied, ‘If you follow what the doctor says, the doctors are there to support you. I’m here to show you how to live well with HIV. You’ll be fine’.

So, she registered me, told me all the do’s and don’ts, the ground rules in terms of this is a confidential space for me to be able to be myself and be able to talk about what I’m going through, because it’s an experience that, you know is going to have it for life, and you don’t want to do anything wrong. I had no idea of the UK medical system. I was visiting from Zimbabwe, so I had no interest in the NHS or anything, and I could not think and imagine how my life was going to be. All I thought of was death. So, seeing this woman saying she had lived for 17 years, I thought she was lying, just trained to make me feel good. I didn’t believe her anyway. Bottom line is, I didn’t believe her.

Then she took me to what used to be called the open space, where the women met. This is like pre-dinner or pre-presentation time. There were women in there, maybe 15 to 20 women who were sitting there laughing, including this relative of mine. They were laughing. They were joking. And I was thinking, do these women have AIDS like me? Really? And they’re laughing like that. Mhm. You know, like you go in, you sit, you just like observe people. You have nothing to say. Then we got served. They used to serve nice hot dinner, but I could not eat much because I was so ill.  And then we just had a topic to discuss, on something, maybe self-esteem, assertiveness, whatever. You know, like just a topic or something that will help you in your daily life. Then I went back home, and when I came again, I was now a regular user. I would just go straight, sign in and go straight to this open space. And I was thinking that if these women can laugh and live, I should be able to do the same. Esther was still on my mind. Like, how did she do it for 17 years, you know, over 17 years to look that good? So that was my number one inspiration. Like, I am determined to live, and I shall want to live well, like Esther. So that was my relationship with Positively Women.

Afterwards they called on for volunteers. I mean, I was quite skilled from Zimbabwe, where I come from. So when they called in for volunteers to help, like work on the patients in the client database editor of the magazine. I can do all this. Tick tick tick [sound of typing]. So when I eventually went to the volunteer interview, I decided to stick with the client user database, entering data and doing the magazine. They posted the Positively Women magazine, which was produced every other month. It was like my cup of tea. I joined the editorial team of the magazine. I said, we need to do an asylum issue because I was seeking asylum. So my first was on the cover of that magazine. And, in those days, there was there was no electronic copy. So, it was mainly hard copies that were posted to many women in the UK. But it’s something that you learn that once you share your status you become open. You can’t go back to being closeted or unshare. So, whenever that magazine issue was going to be published, my face was going to be there. But I was that confident that this is what I wanted to do, because I had all the support from my peers [in Positively Women] and, of course, the clinic.

My treatment journey was quite complex, but, whenever it was, well, I gave it my all. I used to volunteer. I volunteered there [Positively Women] for six and a half years. I was very integrated into the HIV community, and I became a public speaker, very open about my status. Positively, Women organised the first ever conference of people living with HIV in the UK, and I spoke at the plenary there, which, I think, gave me the biggest confidence that I didn’t know I had. But I mean, it was all through the support from everyone in the organisation that I had. So, I think that’s where my journey started, you know, started. And I’ve never looked back since then.

Umoja was a local support group for Caribbean and Black people in Enfield, where I live in London, supported by the local council. So, I was very talkative and I was very involved in my treatment. I had a very good rapport with my doctor and I ended up calling him my HIV husband. He’s retired now, saved himself, but I mean, I just became the person that they used to see at conferences speaking. And they [Umoja] invited me to become the chair of the patient forum in the clinic. So, when I started, I just found myself leading again. That group was really about meeting people who were very different from me —Black or Caribbean, or from different countries —whose confidence and stories always touched me. Some people were not very confident. You heard all sorts of very miserable stories. So, I was able to do what I had learned from the support groups: invite speakers and, you know, just be the representative —the representative voice — in the borough. So the when the physical disabilities team were applying for an Excellency award, I was involved in that and we won it. And I have evidence to show it with a picture of me with Sadiq Khan when he was still the Minister of Local Government. Way back when, I was still very young and he was still so very young. And the other chiefs from the council. So that was one of my biggest achievements with those two organisations.

Nikos: Congratulations. That’s amazing!

Memory: Thank you. Thank you.

Nikos: Were you also involved in international conferences on HIV and AIDS?

Memory: Yes, I have. As an asylum seeker, it takes a while to get your papers sorted. So I got my leave to remain as a refugee in 2008. This is from 2002.

Nikos: Wow. Six years?

Memory: Yeah. Six years. Yeah. Actually, it was only just after Easter. It’s kind of an anniversary thing. So before that point, I couldn’t travel. I used to go to the national conferences like the British HIV Association. Anything happening locally, I used to go with Positively Women. In 2010 was the first international conference I attended in Vienna, Austria where I was invited. And then the job I was doing at the time, I was working for HIV i-Base, which is an HIV treatment information charity. When I got my papers, I think within a week or two, I got myself a job coordinating a network of HIV treatment and advocates. It’s called the UK Community Advisory Board (UK-CAB). So with that knowledge and treatment, you just find yourself being invited or being able to attend conferences with work. Then the next international AIDS conference I attended was in 2012 in America. I went to that as well. But this time now I managed to join the European Aids Treatment Group, which UK-CAB is born out of. So it’s a thing called the European Community Advisory Board. So being a member of EATG, you could also be able to go to conferences. I did go to America. And I was also rapporteur for the conference. So it was just really understanding and getting involved.

And then, I basically got into a project with a South African University where they were setting up an AfroCAB. The CAB theme is ‘going everywhere’. So the Afro-CAB were not a registered organization. I was kind of looking after their funds. And I was helping them set up. So we were also invited to a lot of conferences in Africa. There’s this conference called ‘INTREST’. The interest. I don’t know what those initials mean, but it’s a conference involving young African investigators. And we used to take these people from different African countries to these conferences.

The most interesting story was this woman from Kenya, a young lady. They were doing this new drug called Dolutegravir. I don’t know if you’ve heard about it. Not much, but it’s a kind of drug that was being developed, a very robust drug. People with complex resistance could take that drug, and it’s this small. So we were advocating  for access to that drug at an affordable price instead of the price people pay for it in the U.S. We wanted the generic version so that it’s available in Africa. I don’t know if you’re asking about generic drugs. So most people in Africa were taking the generic Efavirenz. I took that drug for a good ten years. It works perfectly, but the side effects are horrible. Like very vivid dreams. It can be prescribed to people with mental health problems, when you have no choice. In Africa, people were just taking that drug because there was nothing else to take. So we were advocating for it to be, once it was licensed, given to generic companies to manufacture.

Of course, the project had a limit. So most of the things that I do now are through the European AIDS Treatment Group, and I’ve travelled a lot in Europe. I was just in Warsaw last weekend. I was in Spain just a week before, just speaking at conferences, because my thing is advocating for women’s rights, any women’s issue. And now that I’m also a menopausal advocate, making sure that those voices are heard in the sector and that we’re not overlooked. And we’re also advocating for women to be more involved in clinical trials, because we also take the drugs that the young, fit, or, you know, the strong men take. No matter what age or size you are, you still have to take that drug. So we would like you know something a bit more specific to look at us. I mean, as a menopausal woman, my bones are thinning. My hormones have changed. That doesn’t happen in men.

Nikos: Have you also worked with the International Community of Women with HIV [ICW]?

Memory: Yes, I did. I was on the board from, I think, 2008. So that was very interesting as well, seeing women went to Argentina, South America and meeting with other women from Kenya. It is still a very powerful movement right now. It was a very empowering thing to be part of that organization. Yeah, I worked with amazing women, some of whom are still my friends today. So it’s just really empowering working with people that you see again in life. And good to see them doing well.

Memory: Were there any difficult moments in your involvement with those groups? Any moments you felt any bias against?

Memory: Yeah. Well, the only bias that I felt was, maybe not bias, but the difficulty was with ICW when it split. You know, sometimes you split and you think it’s for a good reason. But I think in that case, we were probably disempowering ourselves. Like, if the headquarters are in the UK, yes, they can move to South America, but don’t forget everyone else you know, along the way. So that was probably the only challenge. I mean, everywhere else, I’m probably very assertive and will speak out and make sure that we are heard. Yeah, that’s when the ICW split up, and we all left the board

Nikos: May also ask you about your involvement in ZZUK?

Memory: Where do I start…. So, ZZUK goes back to my days at Positively Women. So, I was very ill in the hospital, once I started treatment (when the treatment starts working, you have side effects and all that). So I had what we call Immuno reconstruction inflammation syndrome (IRIS). I was hospitalised at the time. And the first person to come see me was Winnie. She doesn’t remember. And I always tease her and remind her about it. She even wrote her name and number on a piece of paper that I probably have somewhere. And then from there being involved in Positively Women, I became friends with Angelina and then with Rebecca. Angelina and Rebecca were already friends. So when I became friends with Angelina, Rebecca automatically became my friend. And then we met Charity. It was just it was just natural getting together.

So one day, I don’t know, 15 or so years ago, we were thinking what are we doing with our lives. Support groups were a bit beyond us. You know, when you go to a support group, they’re going to talk about assertiveness. We are already supporting other people back home. For me, I was supporting people back home who call me some people who just find me on the internet. And we’re just like, our needs are changing. We are ageing. I think that at that time we were in our late 30s, or early 40s. We needed a different kind of support. So, we thought, ‘no, we can support each other’. I was going to say no wahala (no problem), as they say in Nigeria. And then, of course, Winnie, the ideas person, said ‘Why don’t we do something? We all love African things’. Some of us are more talented in creativity, like Charity, a designer and seamstress. She can make anything. Rebecca can source anything. Angelina is the project manager. I’m the money person and the IT person.

So it just started from there. I asked ‘what can we do?’ We found African fabric. Let’s buy notebooks and put them in African fabric and sell them. Oh, they’re so beautiful! People love them! So it’s like that joy of producing something. And we’re keeping our everything together. Whenever we sell something or whenever we get a little donation, it’s all transparent. We’ve been friends for a long time. Then we said, okay, we do the business side, but we also still friends. So every month we meet at somebody’s house. All you do is bring food and drink to share. If Angelina makes rice, I’ll bring some grilled beef. So we have so much food in front of us, and we can just sit, bras off, talk, laugh, eat, drink. And then at 1 a.m., everybody is saying, ‘Oh, can I share a cab with you? Because we go in the same direction’. So, that’s the kind of friendship we’ve had. It’s been like that for years. And then Covid had to come, and we found ourselves, you know, isolated and anxious in our own houses.

I had access to a paid Zoom from work, and Angelina had been quite unwell. So, we were like, how do we support each other? We set up a Zoom call every Saturday at 4pm. I’m told by some friends that they still have it in their diary just for nostalgia. We just sat the first couple of times and Angelina couldn’t even talk at that time. She had a problem with her throat. And we just sat there, looking at each other, talking, laughing, everyone. Like, sharing that: ‘I’m so anxious, you know, I can’t even leave the house’. And it continued from an hour’s meeting to three hours. Four hours. So, it was just like that every Saturday. Then, in one of the other meetings, someone said, why don’t you do a picture book? At that time, the COVID-19 restrictions were being eased. So, people emailed their pictures and then we sat down and arranged them into a picture book. That was our first book.

And then as time went on, Winnie was on a TV program and she was like, there needs to be more focus on African people in discussions about AIDS, which will coincide with the 40th anniversary of the discovery of the AIDS virus. And that’s how Our Stories Told by Us came into place. Labour of love, a passion project. We’re lucky to have the funding support that we needed. And of course, Mark Santos was very happy to take us in his support. And we launched a book that has been so well-received.

And we are on to another little new project inspiring other people to write their own stories. People are like, ‘oh, how do I tell my story? How do I write my story?’ So we are working on a project where we are going to ask people to be able to ask them to write their own stories.

Nikos: So, speaking of influences from Africa, are there any important ideas you would say that come from Africa and influenced your work in HIV campaigns in the UK?

Memory: Well, at least from Zimbabwe, where I come from, people used to be very stigmatised. So people never used to share or say, ‘that one has died of from AIDS’. It was either malaria or diabetes or anything else that was decent and not HIV. So it’s interesting to see that change. You know I’m here. I shared my story as soon as I was confident enough to. I was once interviewed by CNN news for World Aids day. And of course it goes around the world.

So people are not very comfortable in sharing their stories. And, of course, my mother would just say, ‘oh, you know, your classmates so and so from primary school died. We buried them’. You know, it was all negative stories. And then at first, we didn’t have any treatment, which was one of the reasons why I was given refugee status. Because if I’d gone back to Zimbabwe, finding evidence that if I’d stopped my stop my medication, I’ll die. Something that the Home Office probably needed to have known then. But anyway, so I had all that support. So sometimes I feel like being open has helped other people become open.

But in Zimbabwe, once treatment was available, I follow women’s groups on social media like Facebook just to see how they are dealing with HIV and so on. So when my boss from HIV i-Base, Simon, when prep was just being talked about, he asked me a question and said, ‘Uh, what if there’s a pill that you can take? Hopefully, with no side effects, easily available that will that will prevent you from acquiring HIV?’ I said, ‘Simon, I’ll give you an answer. Let me ask people on social media’. So I put it in the women’s group. Oh my God. The response is like ‘Where is it. I? I want it now. Like, you know, knowing my husband, I will just take it’. Because, you know, African men are known to just not have one woman. They call them [the women with whom they have extra-marital affairs] side chicks’. So it’s like knowing my husband. I’m sure he has somebody else that, you know, he’s saying. So for my own safety, I’ll just take that pill. Bring it on. That was, probably, 11 years ago now. I’ve been to Zimbabwe a few times and people are very happy to share their status, like, ‘I’m also on treatment. I’m on this. What are you taking there? Is there any hope for treatment?’ So, people ask you these questions about what’s the latest treatment news: ‘What’s going on? Are we getting any cure?’ I’m very good at explaining how this treatment works and so on.

And then the talk changed on social media, because there are people who share their experiences. Some of it is humor, but some of the stories are real. Like you find any girl or any woman who meets a new partner. They write to say, ‘Oh, we decided to go for tests first’, there is this place called New Start Centre (HIV and STIs testingcentre). There are a lot of testing places, so people get tested before they engage in intimacy. Or you hear them say, ‘Oh no, no, we said we use condoms until we know our status’. So for me, that’s progress in a way that nobody is afraid. Nobody is hiding.

I was home in February this year, and I don’t know how many people were coming to me just asking about, you know, sharing how they are doing well on treatment and showing me their health records in books , like, you know, ‘this is what I’m taking, this is what I’m doing. Is this medicine okay?’ I became a little consultant, and my mum too, bless her. There was one distant relative who was in the hospital because they had stopped taking their HIV medication. And I could hear my mum speaking to their mother. She’s a consultant in these things. She speaks to very important people . She knows so much about HIV. And I made my mother proud because she knows what I do. I was lucky enough to go to number 10 Downing Street last year.. So you can imagine my mother. She said, ‘My daughter met the Prime Minister of the UK, not England of the UK’. I love making my parents and my son proud. So it’s like, you know, everyone looks up to you for HIV support, HIV advice, HIV treatment.

What do you say to the Prime Minister? I told him that we want to stop new HIV transmissions by 2030. So imagine everyone is tested and everyone goes on treatment. We can stop this. That’s that. And I find that, you know, in Zimbabwe, the stigma is not as bad as it used to be.

I used to like one of my friends from South Africa who said they were very well known activists. They used to go into the villages explaining treatment, giving names to drugs. They said, ‘You have these three drugs. You cannot take Peter without Paul and John. You have to take Peter, Paul and John at the same time’. So very basic, but very effective way of treatment literacy. So you know it, it worked well.

Nikos: In your work memory, have you been influenced or inspired by any activist groups from Africa or other parts of the world?

Memory: Yes, especially from Africa. The Africa group had people who had very little knowledge about treatment. There was one girl I told you about from Kenya when we were doing the Dolutegravir. So in the meeting we used to meet with other people. And then they would bring chocolates, as a gift. And we’re saying, you know, to this girl she couldn’t pronounce Dolutegravir. She would chew her tongue. Like she just couldn’t. By meeting there, she was able to pronounce it. And we gave her all the chocolate. And now she’s a very good advocate and activist. So she’s traveling the world as well, representing AfroCAB, talking about treatment. So that’s so much inspiration.

You know, I always love to see people do well! My brother is a doctor in Zimbabwe. So he works for the government hospital , and also does private practice. So in his private practice, a girl was diagnosed with HIV and she was 24. She had one child already, and she was finding it very difficult to accept her status. I think she was a friend of a friend, somebody had referred her to him. And my brother just said, ‘If you don’t mind, I would like you to speak to my sister. She’s in the UK, but I’m sure you can talk on WhatsApp’. This is about 12 years ago.

So she texted me like, ‘Hi’. And we just started talking, and she was like, ‘The biggest thing for me is I want more children. I only have one child, and I’m afraid that if I just have another child, I might infect them and I don’t want an infected baby. And I have a partner who’s also not HIV positive’. I forwarded all the booklets about HIV and pregnancy, and I told her to go back because in Zimbabwe, you don’t see a consultant for HIV. You go to a clinic. So I said, ‘Go to the clinic and tell them that you want to get pregnant, and they will change your medication’. She went, she didn’t tell me she had gone to change her medication. It became a regular topic. ‘Oh. What’s happening?’ If I find something interesting, I send it to her, and then we talk maybe twice a month or as regularly as needed. If I go to a conference, then I’ll let her know. ‘I’ve been to this conference’. After almost a year of talking, one day she sent me a picture of a baby and said, ‘Oh, this is your this is your grandchild.’

So she went, had the medication changed, went and got pregnant, and had a baby boy. Two years later, another child. And now they’re all grown up. So, when I went to Zimbabwe, I met her. We’ve become sisters of some kind. She’s one inspirational woman. When I went to see her this time, I’m like, ‘So what’s going on?’ ‘I go and take my medication’. And she took me to her office. ‘This is my big sister from the UK’. She made me so proud. She’s a hard worker. She works for a law firm, sending her children to boarding schools. She’s a single mother who can look after them. And they broke up with the partner for other reasons, not because of HIV, but she’s living her life, a full life without any worries about HIV.

Nikos: May I also ask you, Memory, about collaborating with faith leaders in Africa, but also in African communities in the U.K.? Has this been part of your work? If so, has it been smooth?

Memory: Well, yes, we were collaborating with an organisation called Naz Project. In Umoja, there was a girl from Ghana who, when she came, was referred to by the hospital and then came and joined the support group. She had a baby, and then she had another one. Two young children, very beautiful young children. Two young boys. And then we stopped seeing her, too. When I went to the hospital, the receptionist said, ‘Oh, do you see this girl? Does she come to Umoja often?’ I’m like, actually, ‘You know what? We haven’t seen her in a while’. And then she says, ‘Well, uh, we’re trying to contact her. She has not been to the clinic for a long time. She’s not taking her medication’. They called her while I was there, and she answered. She says, ‘Oh, my pastor said, I’m cured’. The receptionist said, ‘No, we still need to see you to make sure you are cured, as you say. We can send you a cab to come and pick you up and take you back home’. ‘No, no, no, don’t bother’, she replied. ‘I won’t open the door for the cab driver. My pastor says I’m cured’. Unfortunately, she died a very painful death. So, there were Pentecostal churches. So, you know, in church, these people have roles. This other woman was part of the refreshments team, like making tea and coffee after church. And she was told to stop in case she infects people.

So in this organisation [Naz Project], one of my friends took up work with  faith leaders, trying to educate them on how the virus works. The problem with these Pentecostal churches, especially the African ones, it’s all about money. They want to be seen as the messiahs and people who can do anything. So they were telling people that they were cured, so the people would keep coming to church and giving them money. However, there was a breakthrough with people going into these churches and talking about HIV and how it’s transmitted and making people understand that there’s no cure for HIV. So that gave us a good shift because there was one time when somebody was saying to the pastor, ‘Can I break your leg and you can pray over it and see if it gets cured?’ You know, like just trying to make it as brutal, like, ‘This is what you’re doing to patients. You’re breaking their bones and not asking them to get cured, to get hospital attention. They need a plaster. This is the same with HIV. We’re not asking them to stop coming to church. We just want to take their medication. Then they can come to church and be more useful to you’. I think there’s been progress. It’s not as bad as it was at the start here.

Nikos: Let me ask another question, please: Have voluntary counselling and testing programs also spread in African communities?

Memory: Oh yes. I mean, the people I see on Facebook, they’re always ‘We go and get tested first. We can buy a home test kit, or we can go to the centre’. They test, you know it. The results come while you’re waiting. So they go back knowing how they are. Most people test each other at home. So it’s I think you know, the thing is, every African, or at least every Zimbabwean family, has been affected by HIV. There’s no family that has not been affected by HIV because a lot of people died. So there’s really no way anyone should be judging anyone about HIV or looking down on it. And some of these children are some of these orphans who are now grown women and men and were probably born with HIV. So there’s no way you can say to a five-year-old where you get it from [HIV]. So I think there’s a good understanding. I can speak for Zimbabwe and Zimbabwean people.

The way people talk openly about HIV testing and going for counselling in the past on those groups [on social media], there was like somebody who would post that, ‘Oh, I’ve got a new helper in the house, but they’ve asked for time off to go and collect their medication. And that’s what medication says. This is my ARVs. Oh, I am worried about my children. I’m worried about my husband’. You know, that’s the woman talking to the employer. And people went back to her and said, ‘So in your family, you didn’t have anyone who died of AIDS? Would you do that if it were your mother? If this person was your mother, your daughter, or any of your close relatives, and was treated like that [as you are treating that helper], how would you feel?’ So there’s that fight back against the stigma.

And they said, ‘Okay, why are you worried about your husband? Are you expecting your husband to sleep with the helper?’ People are so strong at fighting back.

Another person said, ‘Oh, I just found this medication. I put a picture of the bottle, the medication. I found this in my boyfriend’s drawer, hidden. What is this?’

In the past, I was the one sending links like ‘No, things don’t work like this. If somebody is taking medication, they’re likely not to pass on the virus. They can’t pass on the virus’. I was the one doing the work, and now I just sit back and see people coming with the correct information. So I’m very happy about that.

Nikos: In your HIV work in the UK, how has your interaction been in your campaigns with women who are from Asia or from other parts of the world?

Memory: The UK is very diverse. That’s the nice thing about London, it is extra diverse. So I remember with my work with Positive women, we used to go out to do national work. I remember going to Manchester to a women’s support group with a case worker. I was a volunteer and met women from all walks of life. And Manchester is very Asian. I remember seeing this young woman who was pregnant at the time when she had the baby. I can’t remember, but she was a young Asian woman. Asians, especially Indians, have a habit of going back home to find a bride and bringing them here. So this young girl had a husband, had been living here, went back to India, brought her back as a bride. Of course, they got married. She falls pregnant, goes for antenatal, is tested, tests HIV positive. The husband never says anything, or maybe has never been tested himself. Or maybe he had, but then decided to ignore it. So now she goes back to her husband and says, ‘You know, this our situation’. And the husband is like, ‘You don’t tell anyone that you are HIV positive and you don’t mix with anyone’. So he’s isolating the woman. And the woman is new in the country, can hardly speak English, and the only place she goes to is the hospital. So she was lucky enough to be able to join a support group. She just said to the husband that the hospital asked me to go here as well. So that’s how she managed to get that support, to get that confidence back. But the husband still refuses for her to tell anyone. So she’s like, you know, imagine you are giving birth for the first time on your own. There’s a large Indian community in Manchester, but they just were not allowed to come near her. So we get stories of that. So, because of the diversity, the HIV sector, you can’t pick out one particular group.

I mean, of course, there are some communities that keep things to themselves. So, you find the odd one that comes with the support group. But there are probably 20 more for that one person who are just dealing with the hospital and just keeping it to themselves. You can’t force anyone to do what they can’t do or what they don’t want to do. But it’s nice sometimes to get that shared experience, shared cultural experiences from other women living with HIV.

Nikos: Has the activism of Black African women and Asian women in the UK in the 70s and the 80s, who sometimes worked together against sexism, against racism, has this activism been important for your work?

Memory: I found that this whole activist movement was led mainly by lesbians and gay men. And, working in the sector, my knowledge is mainly from gay men. And they are very supportive in terms of raising our voices. We [Memory, Charity, Winnie, Rebecca, Angelina] have a lot of gay friends, and there were also white women who have supported us, making sure we are seen and heard. So now we are the ones demanding that we also need to see Black and Asian voices; [we need] diversity on the tables where the decisions are being made. One of our friends called us blackists. Because you’re always like ‘Where are the Black people?’. Like it’s something that you want to notice, especially where important things are being done. We want representation!

Nikos: Well, thank you so much, Memory, for our discussion! Is there anything that we haven’t touched upon so far, but you would like to add, please?

 

Memory: Yes. I am worried about Trump and PEPFAR, the funding for 26 million people in sub-Saharan and Southern America whose drugs might run out as we speak. Which is like going back to where we started. So that’s the biggest stress and concern that I have at the moment. What is the world going to do about these people? My own Zimbabwean government can’t afford to buy medication for its people. 80% of the medication is coming from PEPFAR. My government is corrupt. They have millions, but they will never think of putting HIV at the top. There’s no medication. There’s nothing. So I don’t know. HIV will probably be their last priority. And it’s just not just in Zimbabwe. All the countries that get PEPFAR funding are going to suffer.

Nikos: That’s terrible. I was talking with a friend from Malawi, and she was telling me that some of her relatives are counting days. They have pills only for a few more days.

Memory: Very disappointing.

Nikos: Thank you so much for your work, for your campaigning, for being so inspirational, Memory!

Memory: You’re welcome.