What does it mean to tell the story of NTDs ethically?

In our first article of this edition of Leprosy Insights, Dr Jemish Acharya, said,

“Without networks to share ideas and explore the limits of what can be achieved in development work, how do we achieve that growth? Where will the next innovations in our sector evolve if not through networks like NNN?”

Ethical storytelling is a perfect example of growth and innovation that is given room to thrive when developed in partnership.

In this article we speak to Anna Georgeson, Communications Advisor with Unlimit Health about work that is underway within NNN to ensure the stories of NTDs and the people they affect are told ethically. Together with Subin Adhikari from TLM Nepal, Anna hosted a workshop on this topic at the NNN Conference in 2024.

Anna and Subin at the Ethical Storytelling workshop with speakers Brigitte Perenyi and Edna Mussa

Tim from The Leprosy Mission: What is ethical storytelling and why is it relevant to the NTD sector?

Anna: Ethical storytelling prioritises the storyteller's lived expertise and experience. It’s an approach built on trust, which sees people as multifaceted and values how people want their narratives to be told.

Ethical storytelling is a mindset, on top of the tools and practices. It’s about being responsible, recognising that good intentions are not enough, and understanding the long-term impact that harmful, stereotypical narratives have on people’s lives.

Ethical storytelling therefore pursues a deeper understanding and awareness of cultural sensitivities to foster more equitable and inclusive relationships that reflect people’s experiences truthfully.

Ethical storytelling acknowledges that NTDs are complex and affect marginalised populations in places with limited access to healthcare, clean water, and sanitation. NTDs like lymphatic filariasis or leprosy can cause severe disfigurement and disability, leading to stigmatisation and social exclusion, so it’s crucial to tell stories of people with lived experience in a way that dispels misconceptions and encourages understanding rather than reinforcing harmful stereotypes.

Engaging communities throughout the storytelling process ensures that those with lived experiences of NTDs are not passive, but active participants with their own voices, needs, and solutions to share.

Takeaway 1:

Tell stories of people with lived experience in a way that dispels misconceptions and encourages understanding rather than reinforcing harmful stereotypes.

Tim: What are the consequences of not adopting ethical storytelling?

Anna: Telling stories unethically - using single or distorted narratives, for example - not only has a hugely negative impact on the lives of people affected by NTDs but can also lead to distrust in communities, hinder advocacy efforts, and the development of long-term sustainable and community-driven solutions to NTD elimination goals.

For instance, sensational language or imagery in health campaigns can lead to short-term responses, instead of focusing on systems strengthening and meaningful change. We also need to be aware of our responsibility in what stories we share with our audiences and, more importantly, the impact that unethical storytelling can have in contributing to stereotypical narratives.

As Nigerian author Chimamanda Ngozi Adichie said “The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.”

Takeaway 2:

If we focus our storytelling on simple narratives, we risk only getting solutions to simple problems. Long-term problems are solved with nuanced storytelling.

The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.

Chimamanda Ngozi Adichie

Tim: This topic might seem obviously relevant to communications and fundraising staff in the NTD sector. Is it relevant to other teams? Why should everyone be paying attention?

Anna: In my view, ethical storytelling should be embedded across all teams in the NTD sector, supporting the World Health Organization roadmap pillars.

Firstly, when stories are told ethically, highlighting the impact of NTD interventions and prioritising the voices of people with lived experience, they can be a powerful tool for advancing policy and mobilising resources.

Secondly, researchers and programme teams often work closely with communities, so they must follow ethical principles, recognising that consent is an ongoing collaborative process and ensuring dignity, privacy, and rights are respected.

In addition, a unified approach like ethical storytelling strengthens NTD messaging and collaboration between people with lived experience and other partners. Lastly, ethical storytelling fosters a sense of ownership and promotes inclusivity in NTD programmes, so that they are responsive to the needs and priorities of people affected by NTDs.

Takeaway 3:

Teams across the NTD sector should be considering how they can incorporate ethical storytelling into their work. It will benefit everyone, starting with persons affected by NTDs.

Tim: It takes time to present nuance in a story and our audiences have ever-shortening attention spans. Aren’t we going to lose a lot of people by not going for the obvious hooks? Shouldn’t we be trying to captivate as many people as we can to bring attention to important and neglected topics?

Anna: I think it’s a bit of a balancing act – capturing people’s attention but keeping them engaged to dive into deeper, more nuanced discussions surrounding NTDs and broader global health issues.

In an ever-changing and highly competitive social and media landscape, it’s difficult to cut through the noise, so I understand why obvious hooks are tempting. However, oversimplifying complex issues risks moving away from ethical storytelling and offers the audience little room for meaning-making.

I also think audiences are increasingly sophisticated and are drawn to layered, value-driven, and authentic storytelling rather than catchy hooks. For example, giving our audiences access to stories from people with lived experiences of NTDs can foster more connection and sustained interest in NTDs.

Takeaway 4:

We should give our audiences more credit. They are increasingly looking for authentic storytelling.

Photo credit: Ricardo Franco

Tim: How are NNN partners working together to do ethical storytelling better?

Anna: The NNN Communications Cross-Cutting Group held an interactive workshop on ethical storytelling at the NNN conference in Kuala Lumpur last October. Unlimit Health, The Leprosy Mission Nepal, and other partners within the Comms Group were driven to open a conversation on ethical storytelling with wider members of the NNN, acknowledging our responsibility to share broader narratives with our audiences.

The NNN comprises partners from all corners of the globe who come together with a shared commitment to end NTDs. From a communications perspective, learning about partners’ work towards these goals has been fantastic. Still, if we rely solely on sharing information, we risk talking to ourselves and not engaging or building relationships with those most affected by these diseases. That’s why it was important for people with lived experience to share their stories, interact, and open a dialogue on ethical storytelling with NNN members during the workshop.

To add, ethical storytelling has become quite a buzzword in the wider NGO sector but it’s worth remembering that change takes time. This is an ongoing process, so for NNN partners, particularly the Comms Cross-Cutting Group, I think the key is to keep talking, learning, and investing in meaningful relationships. I’m looking forward to continuing working with Subin Adhikari and partners to build on the themes that arose during our workshop.

Brigitte Perenyi and Edna Mosiara, speakers at the NNN Conference workshop on ethical storytelling

Takeaway 5:

A network like NNN is the ideal space for NGOs and persons with lived experience to explore this emerging area of our work and to work out how we can do better.

Top tips for ethical storytelling

At Unlimit Health, we work with ministries of health across Africa. We, therefore, choose to work with creatives from across the continent to co-create stories rooted in local realities. By understanding the cultural nuances, language, and shared experiences that are at play, this approach supports richer narratives and highlights the abundance of talent on the continent.

I’d like to highlight five key takeaways captured during the NNN Comms Working Group’s workshop.

Treat a story in its entirety

Avoid set-in-stone briefs for what a funder or team is expecting to receive, instead be open to a diverse range of stories and avoid the single negative narrative.

Ongoing informed consent is a process

Go beyond forms and instead continuously obtain and reaffirm consent from individuals as you gather, share, and use their stories or personal information.
Reflect on how the story might affect the individuals and communities involved over time.
At Unlimit Health, we use the FairConsent application, a highly accessible tool to collect transparent, ethical informed consent.

Build trust and a relationship with communities through conversation and mutual respect

Spend time with people in the communities to have conversations that lead to knowledge-sharing and a real understanding of how they want to be represented in their own stories.

Top tips for ethical storytelling

Follow the ethical principles of ‘do no harm’ to encourage a more participatory and truthful representation of people with lived experience

It is all too easy for our words to hurt when we are not thoughtful about how we use them. A person's story is a part of them and we should treat that with respect.

Ensure the stories we share are those that give agency so that communities can have true ownership of them

Communities should not be seen as subjects or passive participants but as co-creators in the story gathering and storytelling process. Looking beyond KPIs and vanity metrics, it is through investing in relationships and fostering an environment of trust, authenticity, and meaningful engagement with communities that real impact is created and shared.

WHAT DO YOU THINK ABOUT ETHICAL STORYTELLING?

It's a nice idea, but it stops us telling stories that capture attention
It can work sometimes, but not all of the time
It is the future of the sector so we should pursue it
It's a moral imperative and we must do it