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To End the AIDS Epidemic by 2030: “Ubugeni Bwomora,” ~ Art that Heals, a Call for Collaborative Initiatives Led by Youth Living with HIV

By guest contributors Agape Ishimwe and Joyeuse Senga

In 2015, the ALL IN End Adolescent AIDS initiative was launched by UNICEF and UNAIDS with a global mission to eliminate the AIDS epidemic among adolescents by 2030. Despite commendable efforts, the worldwide number of young people living with HIV continues to rise, particularly impacting adolescents. In 2021 alone, there were 160,000 newly HIV-infected adolescents aged between 10 and 19. These disheartening statistics shed light on the stories of young individuals who often go unnoticed by society, emphasizing the urgent need to involve those with lived experiences in shaping the response to the AIDS epidemic.

“Ubugeni Bwomora,” a Kinyarwanda name that translates as ‘Art that Heals’ is a project (conceived in 2022 and funded and initiated in 2023) that aims to use art as a medium to engage and empower youth aged 14-19 years living with HIV in rural Rwanda through storytelling, self-acceptance, healing, and job creation. It was co-created by the co-authors to foreground the critical role art can play in healing stigma around HIV status and to highlight the importance of stakeholder empowerment. Agape Ishimwe, a young HIV-positive visual artist and activist based in Kigali, has confronted these challenges firsthand, having lived with HIV since childhood. Teaming up with Joyeuse Senga, a Mastercard Foundation Scholar and recent (2023) Master of Science Public Health graduate at McGill University, “Ubugeni Bwomora” was born.

Sharing lived experiences: Agape Ishimwe’s journey

The first step to overcoming shame is often encountering the story of another who has persevered and transcended similar conditions. Agape Ishimwe’s journey to become an HIV-artist-activist began when he was just eight years old; before that time, he knew nothing of his HIV health status. While attending school, he suddenly fell ill after playing for 15 minutes. Overwhelmed by weakness, he could not move, and his condition became a cause for concern. School authorities quickly contacted Agape’s father. As Agape’s strength returned, his father revealed the truth: Agape’s weakness resulted from the medication he had been taking; Agape had unknowingly been living with HIV since birth. This revelation surprised young Agape, but his father’s reassurance and support played a vital role in helping him come to terms with his diagnosis.

Despite his family’s unwavering support, Agape struggled with the weight of being the only HIV-positive child in his family. As he entered his teenage years and began exploring the world beyond his immediate surroundings, he felt compelled to hide his HIV status from his friends. Agape created an alternative identity that did not revolve around his illness. This dual life took a toll on his mental well-being, and he often found himself hiding in restrooms to take his medication, all while grappling with the emotional burden it carried. This experiential trajectory makes it clear that even if strong, loving family support exists until the societal stigma is resolved, the weight of shame erodes capacity.

However, amidst these challenges, Agape discovered solace and self-expression through art. His artistic endeavors became an outlet for embracing his whole self, and he gradually learned to accept his HIV-positive identity. Since 2018, Agape has dedicated himself to pursuing art professionally. His artistic medium spans various forms, from working with fabrics to utilizing plastic, specifically jerrycans. Agape’s experiences and artistic exploration have led him to delve into themes such as authenticity, identity, loss, and the intricate complexities accompanying them. Aware of the prevailing lack of awareness and stigma surrounding mental health for youth living with HIV, he aims to provide a platform through art that allows individuals to express themselves freely, find healing, and encourage one another.

Portrait of Doreen Moraa Moracha, Agape (Acrylic on canvas, 2020), shared with permission by the artist

About the artwork: Born with HIV, Doreen found out about her status only when she was 13. Doreen is now a social media influencer based in Nairobi, Kenya, and founder of the I AM A BEAUTIFUL STORY YouTube channel.

Building Bridges: The Evolution of “Ubugeni Bwomora”

Driven by our shared passion for mental health, and community-based initiatives, we explored the significance of fully involving individuals with lived experiences in community-based projects. Our conversations span the colonial and traditional public health practices perpetuating power imbalances between “public health experts,” the communities being served, and those with lived experiences. Through honest conversations and building trust, and with the support and mentorship and over four months of meetings in 2022 with Building 21 staff at McGill University, our collaboration resulted in the inception of “Ubugeni Bwomora.” In spring 2023, the project was awarded the McGill Mastercard Foundation (MCF) Transitions Project partnership stream funding which facilitates Mastercard scholars to work collaboratively with community organizations based in Africa through community development, social entrepreneurship, and employment creation.

“When our pride was low lookin’ at the world like, “where do we go?” Agape (Acrylic on canvas, 2021)

About the artwork: This piece was inspired by Kendrick Lamar’s song “Alright,” and is a love letter to youth living with HIV who are struggling with anxiety, panic attacks, and depression

Empowering Youth Living with HIV: Reshaping Narratives through Art, Inclusivity, and Allyship

Our partnership represents a beacon of hope and a shift toward a more inclusive approach to addressing the AIDS epidemic. By providing a platform for youth living with HIV to share their experiences, express themselves creatively, and find solace, we seek to challenge societal norms and dismantle the barriers that prevent individuals from embracing their authentic selves. Our vision extends beyond a particular project, aiming to build a future where youth living with HIV can emerge from the shadows, fully embracing their identities and contributing as leaders, advocates, and catalysts for change in their communities. Ultimately, providing youth living with HIV with a seat at the table empowers them to take ownership of their health and well-being. Young people can also play a vital role as allies to youth living with HIV through building intentional relationships, creating safe spaces, and collaborating on youth-centered projects that ensure lived experiences are fully recognized and respected.

PLOS Global Public Health welcomes original research in Adolescent Health, Mental Health, Social, Behavioral and Qualitative Research, and more. Read more about our scope and submit your original research today!

About the authors:

Agape Ishimwe, the principal stakeholder and project coordinator in Rwanda, is a visual artist since 2018, primarily in acrylics. His recent portrait works involve highlighting female activists in Africa. He also transforms plastic containers(jerrycans) into “masks’ that resonate with African art, a comment on Western influences and the struggle of his society to stay authentic. He has worked as an art teacher and given private art lessons to children. His father was HIV positive and one of the first to publicly come out in his community and the church in the early 2000s. Agape is inspired to continue his father’s legacy by empowering adolescents living with HIV to live as their true selves in his community and beyond.

Joyeuse Senga is a McGill Mastercard Foundation (MCF) Scholar. She is a recent graduate in the Master of Science in Public Health program and holds a Bachelor of Science in Public Health and Health Sciences from Samford University. Joyeuse has worked as a Research Assistant on various community-based participatory research projects aiming to understand the impact of COVID-19 on immigrants and refugee communities in Montreal, Quebec. Joyeuse is also the co-founder of the Friends Career Center, a youth project empowering vulnerable young adults through mentorship, professional development, and vocational training scholarships.

Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS.

Discussion
  1. The authors highlight the urgent need to involve those with lived experiences in shaping the response to the AIDS epidemic. In your opinion, what specific changes or shifts in approach can governments and international organizations make to ensure that youth living with HIV have a significant voice in policy-making and program development?

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