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Angelina Namiba on representation and changing the narrative of black women living with HIV


Originally from Kenya, Angelina has over 26 years of experience working in HIV including providing one-to-one support to people living with HIV, treatment advocacy, managing service delivery, and facilitating, promoting and advocating for the involvement of women living with HIV in local and national strategy and policy. Living with HIV for more than 30 years, she is a founding member of the 4M Network of Mentor Mothers living with HIV and sits on various national and international advisory boards and is a Trustee of National AIDS Trust. Most recently, Angelina has co-authored the book “Our Stories Told by Us,” which celebrates the African contribution to the UK HIV response.

What has been your proudest achievement as a prominent figure and community leader in the HIV sector?

I want to answer this question in two ways. Firstly, my proudest personal moment, without a shadow of a doubt, is having my beautiful, talented daughter who is a singer-songwriter. Her name is Hamzaa, check her out at @RealHamzaa on Instagram. Her latest project is Rush, which is available on Spotify, Apple Music, YouTube, and all the other listening channels. She’s my proudest personal achievement.

Secondly, in terms of being called a prominent figure, I feel quite uncomfortable with that title. But I'll tell you why - it’s because I honestly believe that there are so many other women living with HIV out there who do a lot more than I do and don't often get the recognition. Because for me, I'm only able to do what I do by being publicly open about my status and challenging stigma that is directed at people living with HIV because I stand on the shoulders of giants, and these giants are other women living with HIV. Those who have gone before me, those who stand beside me and those who continue to enable, to support and to provide me with the opportunities to do what I do.

For me, I'm not a leader. I’m part of a committed team of women living with HIV across the globe. I want to stress that we don't work in silos, because we are supported and enabled by all those other women who are not able to be public or who choose not to be public about their status, but who work quietly in the background to enable us to do what we do. We are a collective because we nurture, we support, and we inspire each other. And hopefully we inspire the younger generation of women living with HIV who are going to take over the baton from us as we age very disgracefully.

In what ways do you think you are the representation that you needed when you first got involved with HIV activism and the wider HIV community?

Things have changed from when I first started out. One of the things that used to happen, which probably still happens today, is oftentimes in forums and conferences we used to be called upon to speak, but only as a tick box. I am no longer a tick box as it was in those days, I believe that I'm valued for my input above and beyond my lived experience of HIV. My lived experience is incredibly important, but I also have other skills, so I hope that I am valued for both of those. I feel that I am a representation because now I'm able to take up spaces that were not available to us in those early days.

I feel very lucky that I have opportunities to speak on many platforms as an equal. I’ve been involved as a member of groups for research studies, a member of study teams, coauthored numerous papers and peer reviewed others, and I’m a member of a wide range of advisory boards where I feel that my input is truly valued. I appreciate the fact that I, and my peers, are a representation of what didn't happen before and that I am part of what is happening now.

Why do you think it's so significant for you and other black women to be trustees for an HIV charity?

I think it is incredibly significant. That's the short answer.

It's significant for me and other black women to be trustees of HIV charities because women living with HIV, women from minority communities, and just women generally, need to see themselves represented on boards of trustees. It's a no brainer. We need to see ourselves represented on such boards and not to just fill a quota.

We know that there's still a huge gap in terms of representation of women in leadership spaces as trustees, on boards, as managers, professors, you name it. It's not because the expertise or experience is not there, we know there's plenty of women out there who have lots of expertise and can be exemplary. When other women like me, see me on those boards, then they think, ‘you know what, I can do it too.’ It gives you that motivation, that impetus, a drive to try and go for it because you think, well, if she can do it, then I can do it too.

I'd like to acknowledge National AIDS Trust for my role on the board, as I know and believe that my input as a Trustee is truly valued.

What was your intention and hopes with the book you co-authored, “Our Stories Told By Us.”

I’d like to start off by acknowledging my other co-authors: Charity Nyirenda, Rebecca Mbewe, Winnie Ssanyu Sseruma and Memory Sachikonye.

Often times when you hear about or read about African people living with HIV, it's usually negative. We are portrayed as passive, voiceless victims, as just recipients of services. We wanted to change that narrative and highlight our leadership, our resilience, and also to celebrate our contribution to the UK HIV response. The second reason is because we wanted to amplify our voices and tell the stories in our words. Because if we didn't do it, somebody else was going to. For this reason, this book is unique. It's the first of its kind and it tells the narrative from an African perspective. The third reason, and why now, is because we wanted the book to coincide with the 40th anniversary of the discovery of HIV in the UK.

The book itself is beautiful, it has very meaningful African inspired artwork, and it contains over 40 stories, which are mainly African people living with HIV. The stories are diverse, they range from women, men, gay, straight, young, not so young. But also equally important is that we have contributions from our allies because we didn't do it on our own. We did it together with the doctors, the researchers, the community organization leaders.

We wanted to use the book as a tool to reignite new conversations on HIV where people update their HIV knowledge, but we also want to inspire others to tell their stories. There are 40 stories in the book, but there are millions of other stories out there. We wanted to inspire others to share their stories and we wanted to continue to reduce HIV related stigma, which unfortunately even though it's 40 years down the line still exists.

Within the book, all the contributors have a photo with their contribution. It's not just for the book to look beautiful, it's also to show that people living with HIV are happy. We wanted that to be a small way also of challenging stigma because somebody living with HIV, picking up that book and seeing someone like them in a book with their photograph, telling their story, which may resonate with their own story - I think it's very powerful. What we want is for people to know that a fulfilled life living with HIV is very possible. And then just finally, more broadly, we wanted to continue to influence HIV and health policies and to continue to reduce health inequalities among black communities in the UK.

It took us two years from inception to publication. A lot of blood, sweat and tears were shed along the way, but it really is our labor of love. We're all very passionate about it and we were so driven. I think our passion and commitment also added to our friendship and the support that we got really helped us to keep going.

I want to say a few thank you’s, because the book would not have been possible without the support of Michelle Croston and Mark Santos, who really embraced us and took us on. And thank you to our main funder, Gilead Sciences, who believed in us and for the additional support from fast-track cities London, the Terence Higgins Trust, and Positive East.

I always want to end with the words of Nelson Mandela, he said, “It always seems impossible until it's done.”

For more information on our book, people can visit our website at www.ourstoriestoldbyus.com and on Twitter at @our_storiesus. The book is available to purchase on Amazon and Waterstones.

Oct 12, 2023 By santi.agra