Our Stories Told By Us book steering group

To celebrate Africa Day on Thursday 25 May we launched our book, Our Stories Told By Us, our interpretation and celebration of the African contribution to the UK HIV response. 

The book has been in the making for nearly two years, from idea to reality. Inspiration came from commemorations of the 40th anniversary of the first HIV cases in the UK. It is a well-documented fact that African communities are one of the groups most affected groups by HIV in the UK, but our voices and experiences historically have been underrepresented.

Not only was it critical to highlight how African organisations, volunteers and individuals living with HIV mobilised to raise awareness and advocate for HIV treatment access across the world, it was absolutely necessary that this project was led by Africans living with HIV.  We also wanted to highlight allies from other communities and HIV doctors and nurses to give a true reflection of the collective journeys. This book is the first of its kind focusing on African communities and led by Africans.

The process was a new one for all of us as co-authors. There was much to learn, but in true African HIV community style, we mobilised our collective networks to get what we needed. 

Contributors were interviewed face-to-face or on Zoom. It got intense at times, but the excitement remained throughout the process. We had overwhelming support from most people we talked to and an unwavering determination to achieve what we set out to do.

Winnie Ssanyu Sseruma holding up a copy of Our Stories Told By Us book

Above: Winnie Ssanyu Sseruma

There are many themes that run through the book but a few really stand out. The importance of peer support comes through very strongly. There is a feeling of togetherness (Umoja) that many people feel being part of the HIV family. So many have built meaningful connections and friendships over the years – including us co-authors.

The role of HIV treatment in keeping people living with HIV alive and well is also a strong theme. There is sadness for those who didn’t live long enough to access combination therapy and gratitude to those who fought for it. Terrence Higgins Trust is mentioned by many in the book as a pioneer, and that should make the organisation proud.

HIV related stigma remains persistent, but many discussed the importance of talking with trusted family members and friends about their diagnosis, so they don’t have to deal with it on their own and in silence.

We are embarking on a roadshow to take the book to African communities and book festivals across the UK. We want the book to re-ignite conversations about HIV, among families, young people and organisations because HIV is still with us.

Who knows what will come out of the conversations? We hope to build on the book with more ideas. This is an opportunity to learn what is going on in African communities across the country, as we move towards the goal of ending HIV transmissions globally by 2030.

We want to thank everyone who continues to support us on this book journey. We especially want to thank Positive East for their huge administrative support (including hosting our book launch) and Terrence Higgins Trust, Gilead and Fast Track Cities London for the funding they provided. Without the support we received we would have really struggled to get this book done.

You can order Our Stories Told By Us on our website or stay up-to-date with our roadshow via Twitter.