• June Okochi

HISTORY AND MEMORY OF SICKLE CELL ANAEMIA IN BRITAIN1950-2020

Portrait of pain was really a photography project that I wanted to use as a way to express different emotions, all the different emotions that comes with SCD. And, really, it was a collection of just abstracts that you can't really see, and it still goes back to that ‘hidden disease’ I talked about earlier so: the pain, the fatigue, mental health issues, depression, the isolation. All of the things that come with sickle cell, but also the resilience, the support, the love, the battle and the fights overcome.


So basically, I picked real life subjects, real life people who are living with sickle cell or directly impacted by it, whether it's relatives or friends or parents of people who live with sickle cell. And they were my models and I worked in collaboration with my sister and a UK based photographer and really created a beautiful story of people's lives and how they wanted to be portrayed, whether you were showing strength of a mother who had sickle cell with her child, or whether it was showing another mother who was trying to give hope to her teenage girl, or whether it was two siblings who you know lived with sickle cell and have supported themselves since they were young -- telling the story of the invisible complications that come from sickle cell using objects, or example. So, there might be concept of this pain feels like a bad wire wrapped around my legs and my hips and that's the way the pain felt. So, we used colours, we used words, we used stories, expressions.


Sickle cell is an invisible condition. The pain which is associated with sickle cell is equally invisible. Therefore, for people living with sickle cell, art has often been a means to express and visualise the challenges they face. Donald Rodney, a founder of the 1980s BLK Art Group, incorporated his own sickle cell disease into his artwork, using it as a metaphor for issues of racism and racial identity in the UK. This section explores, through artworks and oral testimonies, how art and creative expression has been cathartic for people with sickle cell.


“This is such an important exhibition telling a story not often shared beyond the Black communities, even though sickle cell affects other racial groups. We’re proud to work alongside the Sickle Cell Society to raise awareness on this important subject.” – BCA Managing Director, Arike Oke


Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 is available:

  • In person at the Black Cultural Archives:

  • Friday 21 May 2021 (Thursdays, Fridays, and Saturdays between 11:30 am and 5 pm.)

  • 1 Windrush Square, Brixton, London, SW2 1EF

  • Online at: www.bcaexhibits.org/exhibits/our-journey


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