The Power of Ethical Storytelling in Redefining Narratives as a Strategy to Eliminate Neglected Tropical Diseases.

Imagine a world where global health stories are shaped by communities themselves—vivid, authentic, and powerful enough to shape perceptions, influence policy, and drive change. For too long, the narratives surrounding neglected tropical diseases (NTDs) have been steeped in stereotypes, portraying affected communities as passive victims rather than active agents of their own destinies. This is the lived reality, especially in Africa, a continent that bears 40% of the global NTD burden. In global health, the approach to storytelling can create negative imagery, changing perceptions and understanding of how various social determinants of health lead to undesirable health outcomes.

This gap creates a thirst for ethical storytelling, a central theme during a session held at The Africa Health Agenda International Conference (AHAIC) 2025 in Kigali, entitled ‘From Ethics to Equity: Community Engagement as a Catalyst for Improving Health Outcomes.’ AHAIC, a biannual conference attracting more than 2000 delegates in person and online, offered an avenue to delve into the importance of ethical storytelling in challenging harmful portrayals and fostering dignity, inclusion, and equity.

We need to reclaim the narrative by shifting from stereotypes to empowerment.

Speakers at the session emphasized the urgent need to move away from deficit-driven storytelling and towards narratives that celebrate agency and progress. They shared how stereotypical depictions of Africa have influenced global perceptions, often leading to higher borrowing costs and reduced investments. According to the UNDP Policy Brief on Lowering the Cost of Borrowing in Africa, the challenges African countries face in accessing affordable financing are partly due to global perceptions. Ethical storytelling is one way that such perceptions can be shifted not only in representation but also in justice, ensuring that communities are seen as more than just subjects of humanitarian aid, but as leaders and problem-solvers in their own right.

By shifting the narrative, global health campaigns can move from perpetuating cycles of dependency to showcasing the ingenuity and resilience of communities tackling NTDs. Stories of local health workers innovating solutions, affected individuals advocating for change, and communities taking ownership of their health outcomes must be prioritized, which aligns with the World Health Organization’s 2030 Road Map for ending the neglect of diseases categorized as NTDs.

Every storyteller should endeavour to centre communities by telling stories with the communities, not about the communities.

One of the core principles of ethical storytelling is ensuring that communities are active participants in the way their stories are told. Too often, narratives are crafted without consulting those whose lives they depict. Speakers emphasized the importance of community involvement at every stage, providing feedback, reviewing materials before publication, and ensuring that stories are presented in ways that align with their lived realities. Africa No Filter emphasizes the importance of ethical storytelling in reshaping narratives about Africa and provides an Ethical Storytelling Handbook and courses on How to Write About Africa.

Language and format also play a critical role. Ethical storytelling requires the use of local languages, culturally relevant mediums, and accessible formats to ensure that the stories resonate with the very people they represent. It is about fostering true collaboration, ensuring that those sharing their experiences have control over how they are portrayed.

Dignity, consent, and ownership in storytelling are paramount.

The session reinforced that consent must be non-negotiable. It is not enough to simply capture a moment; storytellers must ensure that individuals understand where and how their stories will be used. Too often, photographs and personal experiences are shared globally without those featured ever seeing the final product. Ethical storytelling demands a fundamental shift, one where communities have the power to shape their own narratives and retain ownership over their stories.

A key question raised was: Who wants to be the face of a disease? Many organizations continue to use imagery that exposes individuals to public scrutiny and stigma. Ethical storytelling offers alternatives by focusing on impact and context rather than shock value. Instead of exploiting images of suffering, storytelling can highlight perseverance, solutions, and the broader social determinants of health.

Ethical storytelling is not solely the responsibility of journalists or non-profits; it requires a concerted effort across sectors. Governments, media professionals, healthcare workers, and community leaders must come together to create narratives that are truthful, empowering, and transformative.

The session highlighted actionable steps to achieve this, by promoting counter-narratives that challenge exploitative storytelling, training and equipping local storytellers with tools to document their own experiences, ensuring transparency in how stories are gathered and shared, and prioritizing stories of hope, innovation, and equity over those that reinforce victimhood.

Above all, we need to tell stories that uplift, empower, and honor the communities we serve and belong to in the global south to win the fight against neglected tropical diseases. As the resource media puts it, when telling someone else’s story in the presence of unequal power dynamics between the storyteller and the source, good intentions are not enough.

Contributors: Michael Ofire Ofire, Victor Omanje, Saida M. Kassim, and Faith Mutegi.