Does this feel dignifying? Considering, telling, and sharing more ethical stories

“I want to talk
about what happened
without mentioning
how much it hurt.

There has to be a way.

To care for the wounds
without re-opening them.
To name the pain
without inviting it back into me.”

― Lora Mathis

Stories shape our imaginations and, therefore, the realities we live in. Some are narratives that are dominant and that dominate. These often serve to perpetuate, reinforce, and entrench stereotypical and stigmatising narratives and norms: that is, the ways we understand social issues and the people experiencing them. There are power dynamics inherent in how stories are told: whose worldviews are being shared, and the frames through which we receive them. If people are the sum of the stories told about them and the stories they then internalise about themselves, whose imaginations are we living in, and what does it take to challenge this?

The content designer as story narrator

Content designers often tell stories about the people and communities they are working with. These come in the form of case studies, or efforts to make content more “real.”

How then do designers tell stories respectfully, in ways that honour the dignity and uphold the rights of participants?

How might we tell stories in ways that not only benefit a service, product, or brand, but that equally benefit the people whose stories are being told?

And how do we create opportunities for people to tell and shape their own narratives about themselves and their communities?

As someone who had to use social services for many years, my story was often told on my behalf. This happened in ways that didn’t capture or do justice to my life or circumstances, didn’t uphold ethical principles and practice, and that therefore did harm. This harm ran deep, distorting how I understood my identity and felt about myself. At its worst, it further reinforced damaging narratives that I was trying to work myself out of. It had detrimental impacts on my recovery and healing, on the person I was fighting to become.

I also experienced times when telling my story was a deeply transformative and powerfully healing experience: when the ways in which my stories were held and shaped were done with me, in ways that upheld informed consent and honoured the narratives I was working to unearth about myself. In some special instances, where truths were told about me, it transformed how I understood and saw myself. Those truths included strengths and characteristics I had not yet perceived in myself.

This chapter seeks to unpack how we can tell more ethical stories as part of our design practices. It explains how the act of co-creating narratives, in partnership with the people and communities we work alongside, enables us to tell more nuanced and multifaceted stories in support of social and systems change, and innovation. Ethical storytelling means that we are not further entrenching cultural myths that strip people of their humanity, their multitudes, and their agency.

As part of our design work, we often invite people to tell and share profoundly personal and sacred stories with us. But we aren’t always equipped with the:

• essential training, support, or understanding of trauma-informed interviewing techniques,
• space-holding capability required to facilitate these processes,
• understanding or discernment required to effectively engage with and consider cultural and other distinct sensitivities.

Are we considering what questions are appropriate to ask? What aspects of people’s lives can even be considered or uttered out loud? For example, we might need to consider:

• how to approach the topic of challenging power,
• whether it’s appropriate to ask someone to think critically about family or kin,
• what is allowed to be shared with people of other cultures and identities due to the sacredness of the information, story, or meaning.

For those of us working at the intersection of those with lived experience who are sharing stories, and the organisations and the media who want to use and benefit from these stories, there are 3 distinct questions I find useful to ask before we set out in this work.

1. How do we hold stories with sensitivity and care?

Set out with a stance of deep humility, having done the pre-work required to determine whether we are the right person to be asking questions of this person or community. If so, are we then capable of the quality and level of listening and holding required?

2. How do we tell stories well and in ways that lead to action and change?

The act of telling stories alone does not immediately lead to change. What people do with the stories that are told does. If we are asking people to share difficult and highly personal things about themselves and their lives to influence change, we must create the conditions wherever we can for these stories to lead to action and the possibility for meaningful impact.

3. How do we share stories in ways that educate, not just pull on heartstrings?

When telling stories about impact, particularly in the context of sharing about the efficacy and value of social services, pulling on people’s heartstrings is a well-known tactic to move audiences to action. But value is not simply about dollars raised or reputation; it is also about our responsibility to the people and communities we seek to serve. There are real-life consequences of playing into damaging tropes for short-term gain.

With these points in mind, what should we consider when retelling or using someone else’s story in our content? How might we protect and preserve their dignity and the integrity of their stories, and how do we balance these aspects with what organisations or clients might be wanting or needing from the work?

Foundations of ethical storytelling

Let’s start with the basic building blocks of how to work with a person who may be sharing their story.

Informed consent

First, does the person understand exactly what they are saying yes or no to, and can this choice or decision change over time? These are some key aspects you may wish to consider:

Who

• Which person or community is being asked to tell this story?
• Who is the person or people holding space for the story to be told, and what is their intention?
• Would the storyteller prefer the use of a pseudonym to protect their identity?

What

• What is the context in which this story sits?
• Is there a particular angle or broader messaging that is important for the storyteller to be aware of?

When

• How long is the timeline or lead-up to publishing? Is there time for the storyteller to review and approve what is being shared, and how it is being shared?
• Does the storyteller have enough notice to prepare themselves before the story goes live?

Where

• Where will this story be shared? In print or online? On billboards or the side of buses?
• Can we predict or advise how far the story might travel?

Why

• What is the purpose of this story being shared?
• Whose idea was it, and who stands to benefit from it?

Mitigating harm and mapping risk

Do we know what supports the person already has in place, or what supports they might need, as part of the process? People need a trusted network in their lives to walk alongside them when entering processes that may make them more vulnerable. This might include people to talk to, or make sense and debrief with. This is particularly important if and when painful memories arise, new information gets unearthed, or when speaking out loud about something old brings up new perspectives, emotions, and understanding.

Right of withdrawal

Does the person know that they can exit a storytelling process at any time, and that there will be no repercussions for doing so?

As designers who may be working with or representing social service organisations, a power dynamic exists. Within this dynamic, those we ask to tell stories may not feel safe enough or able to express themselves honestly, for fear of being treated differently by their support workers or the organisations they are accessing support from.

Intellectual property

Be clear about limitations of the use of storytelling content. This might include:

• how many times it can be used,
• if and where it can be repurposed,
• for how long it can be used.

It’s important to be clear about the intellectual property that will be created from the person’s experience. Who owns it? Even if the person was offered financial compensation for their time, who owns the content that the person’s story informs and shapes?

The how is deeply contextual

From here, we can get further into the detail of the how.

As with most things involving people, the answer to these questions is always contextual. Over the years, I have been part of storytelling processes with people where the act of writing stories together is an incredibly powerful experience. This might look like sitting down with someone and having a guided conversation where I take notes based on what the storyteller is sharing, and then we edit together.

This is similar to the content design practice of pair writing: the storyteller is the subject matter expert. My role is like the content designer's: to help tell their story. Through a process like this, I might ask and consider questions like:

• Did you use words that you would normally use, or did I put words in your mouth?
• Did I interpret or misinterpret anything said based on my own worldview or biases?
• Is there anything you would like to add, change, or delete altogether?
• Are there any details that feel too identifying (if working to protect a person’s identity)?

And perhaps one of the most critical questions I ask myself internally:

• Is there a clear enough purpose to this question, statement, or response or is it simply to satisfy my own curiosity or need to feel a certain way?

When it comes to authorisation, it is critical for designers to understand that we have power and a responsibility to ethical standards. Although we may see ourselves working to bridge between organisations and institutions and people with lived experience and communities, we must question who we see ourselves predominantly accountable to and why. We must ask ourselves: does this feel dignifying? And we must educate the people we work with if we believe a story and/or the dignity of a person is being unjustly compromised or jeopardised.

Potential difficulties to be aware of when commissioning or sharing a story

Over the past decade of supporting people as they tell their stories and helping organisations build the conditions for stories to be told, I have learnt that the act of sharing stories is a highly contextual experience. Each experience is different, and you can’t just repeat the same thing you’ve done before. The process depends on many factors, but some main considerations are:

• where people are at in their lives,
• the levels of internal and external support and stability they have at the time,
• situational and environmental factors, like where a person is telling a story and who is around them in that place.

At the heart of this learning has come these understandings:

No telling of a story is ever the same

The way we tell stories and how we feel about the process is different for each person and community. What has worked for me or for someone else may not work for others. For example, I’ve moved away from sharing intimate parts of my story in public for reasons that are specific to my own circumstances. But other peers and advocates I know get a tremendous amount of strength and validation from sharing their stories. For each of us, the experience offers something distinct, and the reasons and motivations for why we share may change over time.

Sharing from open wounds versus scars

There is a fine line between sharing vulnerably and sharing in ways that are detrimental. Although it’s important to understand this distinction, it’s equally important to know that we learn about it through the practice of doing and experimenting. There are times when sharing from rawer wounds is entirely appropriate and necessary.

Years ago, I remember having a conversation with a peer about this topic, and I’ll never forget what she said to me: “Sometimes, I see people bleeding [as they’re sharing] and you can tell that they’re hurting. It hurts to see that.”

From my own experience, there has been at least one occasion when I was very well-supported and prepared to tell my story to a group. But when I got up to share that day, I spotted someone I didn’t expect to see in the audience. This triggered an emotional reaction. I did go on to tell my story, and although this was a cathartic experience for me at the time, that outcome was very much due to the conditions:

• the place where I was in my own recovery meant I had the internal strength and external support to move through the experience in a positive enough way,
• there were many trusted people I knew in the audience, all of who were supportive and able to act as a kind of buffer to help absorb the shock of my reaction,
• it was a closed event in an intimate setting, and I had enough speaking experience to feel prepared for what happened in the moment and any fallout afterwards,
• it was also a positive experience for the audience, with many people sharing how powerful it was to witness.

In a different context, with different people, or on a day when I might have been another version of myself, this very same experience might have been re-traumatising. This is what I mean by the contextual and sometimes unpredictable nature of sharing personal experiences. And this is why it is important for us to set up supportive conditions so that storytellers are more likely to have a beneficial experience.

Parallel and corresponsive impacts

Telling stories affects not only the teller, but also listeners. We’ve all been moved by stories in our lives. I’m sure that if I asked you to think of one right now, you could vividly remember a story or message that has changed you somehow.

I’ve reflected on the safety and ethics of storytelling for those sharing, but there is equally something to be said about the experience of and impact to those receiving and absorbing what is being shared. When sharing personal experiences, I am a strong supporter of being able to speak truths – being blunt, honest, fierce, and expressing righteous anger. I have also experienced first-hand the reality that details matter, especially when it comes to sharing about traumatic experiences.

Although we are not in control of how people receive our stories, a simple forewarning doesn’t hurt. This doesn’t need to be content or trigger warnings, but some sort of notification or foreshadowing can help, so that audiences know to prepare themselves. It also feels critical to add here that there are certain topics that ought to make us feel uncomfortable and that we must practise sitting with; for example, when people share stories about abuses of power. To help with this distinction, I often ask myself:

• Am I feeling unsafe or am I feeling uncomfortable?
• What helps me to identify, feel, and know the difference?
• What capacity do I have to be attentive or react in a way that's consistent with my values in this moment?

I learnt something fundamental on this topic from Australian comedian Hannah Gadsby’s show Nanette:

“This tension is yours. I am not helping you anymore. You need to learn what this feels like, because this tension is what not-normals carry inside of them all of the time. It is dangerous to be different.”

As people making decisions about how stories are told, we have the power to “raise the temperature” with the ways we craft narratives and messages about social issues. Those who have been “othered” by mainstream society (many of whom are survivors of abuse and systemic trauma) often hold profound tension that cannot be reconciled. They are then asked and demanded, in both explicit and implicit ways, to protect others from feeling this same tension by telling sanitised versions of their truths. There are considerations in weighing up the agency and empowerment of those who choose to share their stories, how far we push audiences to confront difficult truths, and the ways in which we approach both.

The deeply cultural, personal, and phenomenological nature of stories

Ultimately, people must be supported to tell their own stories. People and communities should be able to tell stories about their lives in their own words and ways. As designers, when we are asked to tell stories on behalf of other people, how can we use our positions to challenge the way things are done? How can we help the organisations, institutions, and clients we work with to move towards more participatory and creative approaches?

A working set of principles

I offer up this evolving list of principles as a guide for moving from the extraction of people’s stories towards storytelling processes that are more dignifying and mutually beneficial.

Get underneath the story to the learning

People are often asked to share unnecessary details of what they have lived through and experienced. This is commonly done in ways that stoke inappropriate curiosity and sensationalism.

What we really want to get to is what people have learnt from what they’ve lived through: what they’ve learned about themselves, other people, and the world around them. Ask questions that help people to engage in a process of mutual reflection and that move to deeper levels of inquiry.

From empowering to power building

We do not “empower people,” but we can contribute to the conditions and circumstances that support people to see, understand, and exercise their own personal power and agency. So instead of assuming our processes are necessarily empowering, let’s work with the people who are telling the stories to understand and sense-check what powerful narratives and messages look and feel like to them.

Learn how people best express themselves

We often place dominance on the written word, but not everyone best expresses themselves this way. There are many ways of telling stories, including the use of:

• photos,
• voice,
• animation,
• poetry,
• other creative methods.

So often, people’s experiences are beyond the realm of words. Help people find what feels and works best for conveying their message and the impact they want their story to have.

Illustrate people’s multitudes

Impactful and memorable stories bring people to life. They don’t trap them in overly simplistic boxes. It is common to represent people as one aspect of their identity or experience and to keep reinforcing it. But people are more than simply victims at one end of the spectrum, and victors at the other. People do not simply “get over” the things that happen to them, they move through them over time. We must help audiences grasp the multidimensional nature of the people in our stories, not merely draw the boundary at their circumstances.

Move beyond exceptionalism

When it comes to narratives about “overcoming disadvantage,” a common trope is to make exceptions of and glorify those who achieve greatness “despite” their circumstances. This can work to further reinforce narratives of individualism and hyper-individualism. Let’s not unintentionally celebrate hyper-independence. Let’s instead question systems that demand an excess of resilience.

Final reflections

Over many years and iterations and evolutions of myself, I have at times experienced a strong external pressure to (as Sarah Wilson puts it in her 2017 book) “make the beast beautiful.” As part of my own storytelling, I’ve felt pressure to:

• turn negatives into positives,
• turn the volume down on the harms and the pain,
• end on notes of hope in the hope that people will listen and be moved to action.

But sometimes power comes from saying something plainly, from calling something what it is. In not dressing anything up, or toning it down, but by simply stating a truth and letting it hang there; suspended, outstretched. To turn the insides out. Two passages come to mind:

“We do not have to romanticise our past in order to be aware of how it seeds our present” – Audre Lorde

“In order to retain our visions, to protect our imaginations, and keep our surface tension, we have to hold tightly to that space of refusal.” – Ruby Oluoch

To end this chapter, I share a powerful message from advocate and 2021 Australian of the Year Grace Tame. This comes from her National Press Club address in March 2021:

“listening to survivors is one thing – repeatedly expecting people to relive their trauma on your terms, without our consent, without prior warning, is another. It’s sensation. It’s commodification of our pain. It’s exploitation. It’s the same abuse.

...Healing from trauma does not mean it’s forgotten, nor the symptoms never felt again. Trauma lives in ourselves. Our unconscious bodies are steps ahead of our conscious minds. When we are triggered, we are inevitably at the mercy of our emotional brain. In this state, it’s impossible to discern between past and present. Such is re-traumatisation”

My hope is that these words echo in our minds the next time we are tasked with asking someone to share about their experiences or telling stories on behalf of others. When people are asked to delve into and return to the most painful parts of their lives, they are exposed to the risk of re-traumatisation every single time. This does not mean we shouldn’t engage in storytelling, but it does mean that we are required to bring a level of intentionality and consideration to the lasting impacts of how people’s stories are told and shared.

Thanks

A huge thank you to Lora Mathis for the use of her exquisite poem, “If There’s A Way Out I’ll Take It” - the first strike of inspiration for this chapter.

Reference and further reading