Using the Medium of Art for Activism - Sickle Cell Awareness Day With Rizzy Akanji

For Sickle Cell Awareness Day, we caught up with multi-talented artist Rizzy Akanji, who uses art to express his own experiences with sickle cell while simultaneously raising awareness of the condition. 

Sickle Cell Disease, also referred to as Sickle Cell Disorder or Sickle Cell Anaemia, is a hereditary condition that impacts red blood cells, causing episodes of intense pain, potential organ and tissue damage, and the risk of other significant medical complications. 

Why Do You Explore Sickle Cell Through Your Art?

I explore sickle cell through my art because it is a deeply personal subject that has significant societal impacts, particularly within Black African and Caribbean communities. My work aims to shed light on the complexities and challenges of living with sickle cell disease—an often misunderstood and underrepresented condition. Through my art, I strive to convey the emotional and physical experiences associated with the disease, fostering greater empathy and understanding. 

Art provides a powerful platform to communicate these stories in ways that are both visceral and accessible, allowing people to connect with the subject matter on a deeper level. By integrating elements of digital art and poetry, I can express the nuances of the condition's impact on individuals and their families in a way that educates and moves audiences. Moreover, using art to discuss sickle cell disease helps to combat stigma and misinformation. It opens up conversations, promotes education, and encourages advocacy by illustrating the realities faced by those affected. This approach not only raises awareness but also sparks action, such as increasing blood donations, which are crucial for many patients' treatment. 

Ultimately, my art is about turning personal and communal struggles into catalysts for community connection and social change, making the invisible visible and the silent voices heard. Through my exhibitions and collaborations, I hope to continue making a meaningful impact by engaging more people in the fight against sickle cell disease and supporting those who live with it every day.

Why Are You Vocal About Sickle Cell?

I'm vocal about sickle cell because it's not just my story; it's a collective experience shared by many within the sickle cell community. As a voice for others navigating the challenges of this condition, I feel a responsibility to raise awareness and advocate for better support and resources. My goal is to shed light on the realities of living with sickle cell, dispel myths, and foster empathy and understanding. By amplifying the voices of the sickle cell community, I hope to drive positive change and improve the quality of life for all those affected.

How is Your Experience Living With Sickle Cell?

Living with sickle cell has been a profound journey marked by both resilience and struggle. Childhood was particularly challenging, as I spent countless hours in hospitals, isolated from friends and missing out on school activities. This not only impacted my physical health but also made education more challenging, as I juggled managing pain and trauma with academic responsibilities. The constant battle with pain and the uncertainty of when a crisis might occur added layers of complexity to everyday life. Despite these challenges, my experience has shaped me into a stronger individual, instilling in me a deep sense of empathy and determination to raise awareness and advocate for better support for the sickle cell community. Today, I find relief from regular sickle cell crises thanks to the blood donations I receive through exchange transfusions, highlighting the vital importance of blood donation in managing this condition and improving quality of life for individuals like myself.

What is Something You Think People Should Know About the Disease?

One critical aspect people should understand about sickle cell disease is the immense mental toll it takes on individuals living with it. Chronic pain becomes a constant companion, impacting not only physical well-being but also mental health. Moreover, sickle cell is often referred to as an invisible disease because many of its symptoms are not outwardly visible. This can lead to misunderstandings and scepticism, making it challenging for patients to receive the support and understanding they need.

How Has Your Experience Been Accessing Care?

Accessing care for sickle cell has been a journey of gratitude mixed with challenges. I'm incredibly thankful for the amazing healthcare professionals who work tirelessly on the exchange transfusion team. Their dedication and expertise have been invaluable in managing my condition and providing much-needed relief during crises.

However, the experience at A&E has sometimes been challenging due to the misconceptions and lack of understanding about sickle cell. Some healthcare professionals there already have their own misconceptions about the condition, which can lead to delays in receiving appropriate care or even dismissiveness towards the severity of sickle cell. Despite these challenges, I remain hopeful that with continued education and advocacy, we can improve the overall healthcare experience for individuals with sickle cell and ensure they receive the support and treatment they deserve.

Has Your View/Relationship With Sickle Cell Changed Since Creating Artwork Inspired by the Condition?

My view and relationship with sickle cell disease have profoundly changed since I began creating artwork inspired by it. Initially seen through a lens of challenge, my artistic exploration has revealed the condition as a source of immense strength and resilience. This shift has led me to view sickle cell not just as a medical condition but as a unique superpower that those affected wield. It embodies their extraordinary courage and adaptability, transforming my perception and enabling me to celebrate their tenacity and spirit through my art. This perspective celebrates not only the struggles but also the profound impact and inspiration of the sickle cell community.

On Your Instagram Profile It Says “Digital Artivist”, What Does This Mean and How Do You Fit This Description?

The term "Digital Artivist" on my profile represents my role as both an artist and an activist who uses digital media to drive social change. This description fits perfectly with my work, as I leverage digital art and poetry to raise awareness and foster understanding around sickle cell disease. I create content that is not only visually compelling but also rich in advocacy, educating viewers and motivating them to action, such as blood donation sign-ups. This combination of art and activism harnesses the power of digital platforms to reach and impact a global audience, making the art accessible and the message resonate far beyond traditional gallery spaces. This approach aligns with my mission to use art as a tool for societal impact and community building, particularly within the sickle cell community.

What Has the Reception to Your Art Been? Do You See Yourself as Someone That is Widening the Conversation Around Sickle Cell Disease?

The reception to my art has been overwhelmingly positive, with thousands of people across TikTok engaging and thousands of comments pouring in. This viral response has brought messages from individuals worldwide, emphasising how my work helps those with health conditions, particularly sickle cell, feel seen and heard. At the exhibition, which attracted over 600 attendees in one weekend, we also facilitated over 70 blood donation sign-ups. This enthusiastic response underscores my role in broadening the conversation about sickle cell disease, using art to deepen understanding and support within the community.

Do You Have Any Upcoming Events or Work Coming Out?

I am actively planning to organise an exhibition for Sickle Cell Awareness Month in September. I am particularly interested in partnering with British institutions to support and amplify the impact of my work. 

To support Rizzy’s work, head over to his website, https://akanji.studio/ or follow him on Instagram. 

Charity Check-in

At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article. 

Sickle Cell and Young Stroke Survivors (SCYSS). This charity aims to holistically support and educate children, young people and their families affected by sickle cell disorders and childhood stroke. Learn more here.

The Sickle Cell and Thalassaemia Support Project (SCTSP). This is a charity with a mission to address health disparities in Wolverhampton, Walsall, and Dudley for families affected by sickle cell disease or thalassaemia. Find out more here.

The Sickle Cell Society. This charity is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life. Support them here.

This article aligns with the UN SDG Good Health and Wellbeing.