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From an early age, I knew the power of my words.
When I was seven, I attended a part-time special school in Adelaide. I had just lost a few baby teeth when, one day, somebody from the special school asked me if I wanted to be on a local TV morning program to promote a partnership between the school and a South Australian environmental initiative. I had only just begun to speak complete sentences.
"YES PLEASE!"
The first question the host asked me was, "So, what's it like being in the wheelchair?" I remember thinking about how weird that question was. With 33 years of hindsight, I understand its uncomfortable to ask a semi-verbal seven-year-old such a direct question and expect a coherent answer. I answered the best I could, though. "I like to go fast! "I said with a gapped tooth grin.
I don't remember what else I said, but the guest in the previous segment was a World War II veteran. He had a tear in his eye, and when I had finished, I looked at my teacher and wondered if I had done something wrong. But the man approached me, said, "Good job, young man!" and gave me his hat. Looking back, that's when I embraced my power of storytelling. The ability to share parts of my personal life, be vulnerable, and connect with people is something I've carried around with me ever since.
Co-Design and the importance of story for providers
In my experience, providers are almost always aware of the importance of sharing personal stories, but rarely understand the emotional energy required.
If you are not disabled, it is worth considering the kind of information that you would like the person with the disability to share. Further, it would also be worth examining the potential costs of sharing this information.
The consequences of sharing otherwise private details may not always be readily apparent, but providers must create a safe space for storytellers to work through their emotions. Disability, by its very nature, limits the autonomy of individuals. We can compensate for this and reclaim our agency by controlling our own narrative.
As the sector continues highlighting the importance of lived experience, here are some things worth considering before you ask a person to share their stories.
What personal stories are worth telling?
It may seem obvious, but stories should be used to grab people's respectful attention, especially if they don't have a disability. Stories are my way of grounding the theoretical in reality. Before asking a person to share their personal stories providers need to consider what they want to achieve, and how they want a message conveyed.
It is best when the listener empathises with everyone in the story, even if the antagonist doesn't behave in the best light. There's a reason for ignorance, even if it doesn't excuse it.
I also share stories from my own life to offer an out-of-the-box example that asks the listener to challenge their assumptions about what they think they know.
For a story to have maximum power, I don't go back to the well and repeat the same story repeatedly for a different audience. Occasionally, I might use a mature theme for an audience of adults, mainly if I'm talking about a controversial or taboo subject. Still, if I'm talking to parents, for example, I'll tell more stories about my family than I would otherwise do (with their permission).
Perhaps the hardest lesson I've learned as an activist is to consider whether I would want my loved ones to hear a story back told by a random stranger. As a teenager, I would push the boundaries of acceptable behaviour, only to realise that what I shared was too private and personal. This would be manageable if the story were mine alone. If I'm telling stories featuring other people, particularly those I love, I must also be careful of their privacy and dignity.
The Toll of Storytelling
I have a clearly defined line about what stories I will share and ones I will not. It is crucial.
Sometimes, I can review these criteria in half a second and check it off as acceptable to share or leave it in my head. Other stories take weeks, months, or years to process, and I often discuss them with my counsellor to check whether a story brings up unresolved feelings for me.
Having a clear delineation between what is public knowledge and what is my own private experience is the crux of sharing stories as a person with a disability. No one will have the same boundary, but it is essential that whatever the boundary, it is never crossed. If it's violated, the boundary will be extended to the point where the stories are no longer theirs. Everything would be open for public consumption.
When approaching a person with lived experience, it is important that both parties set clear boundaries concerning what topics can be discussed and what are off limits. This ensures both parties are comfortable and clear with what expectations are established. After this important conversation, always offer the person an opportunity to change their mind. This will allow them space to assess the impact of their words, and on the audience, especially if they agree to continue.
In the age of co-design, everyone benefits from people with disabilities sharing their stories. However, those who expect people with disabilities to share their stories must recognise the responsibilities in doing so. There is a balance between sharing a personal experience to illustrate a larger point, and making sure a unique experience is not necessarily reflective of an entire cohort of people with diverse backgrounds. I take great care to highlight that my feelings and personal experiences are mine alone and should not be substituted for the thoughts, opinions and feelings of others. Therefore, it takes considerable emotional labour, deep thought, and careful consideration before I can be satisfied with the stories I decide to tell.
Perhaps it just takes a single sentence to show your appreciation? After all, there's a reason I have never forgotten "Good job, young man!" 33 years later.
