To start a movement, tell a story

I was recently asked to talk about why I became an advocate for change in healthcare. I could have shared statistics about how patient engagement leads to better outcomes and safer care, but instead I told a story about an evening I had in a hotel bar that changed my life.

My son was about nine years old, and I was attending a training program for parents of children with complex healthcare needs. I was exhausted and overwhelmed, having spent years doing whatever the doctors told me to do—refilling prescriptions, booking appointments, and organizing health records into huge binders that I carried with me to every healthcare visit. On the outside I looked like I had it together, but on the inside, I felt anxious and afraid. Would he ever learn to walk? To read? Would he grow old enough to fall in love? There was so much that wasn’t clear. The fear left me disconnected from myself and from him.

The training involved an overnight in a hotel and I was so happy to get away. In the evening I sat in the hotel bar with another mom, and I made a comment about how hard our lives were. “Cristin,” she said, “if you want me to listen to you talk about how hard this is I will, but if you want to talk about how to make things better, I’m really much better at that.” I was flooded with embarrassment. Over the next few days, the shame turned to hope. How might things be different if I stopped focusing on how hard and scary things were, and instead focused on what I could do to make things better?I

I told how within a year, my life had completely changed. I was able to find a diagnosis for my son—something his geneticists hadn’t in 9 years. I had advocated for a better school and for activities where he could make friends. I connected with some strong, fun-loving parents who faced challenges but didn’t let it define them. We got organized with other families and went to visit our politicians in Washington to make health care affordable, so that families like ours could be safe and healthy. It felt so good to get in the driver’s seat – and it’s something I want to help others to feel.

In healthcare, we talk a lot about evidence. We believe that by telling people the facts, they will change how they thinkand more importantly, what they do. We talk to their heads, using reason and logic. Facts matter when it comes to healthcare. Scientific inquiry has helped us live longer, healthier lives. But why doesn’t knowing the facts always lead people to change?

“It’s not a movement unless someone moves,” it is said. We can’t think our way to action. Knowing is important, but at some point, we must also do. Finding the strength and courage to take action almost always requires more than statistics and facts.

Activists, advocates and change agents are increasingly using their own personal stories to awaken leadership in others. Stories speak the language of emotion, the language of the heart. They not only teach us how to act, but also inspire us with the courage to act. Our stories help us translate our values into action by accessing our emotions.

How we tell our story matters. I’ve been to conferences and meetings where a patient or family member was there to tell their story, but rather than moving people to change, the story left listeners feeling accused, resentful or frustrated. I’ve done it myself. Telling my story was hit-or-miss, and I couldn’t quite put my finger on why it sometimes worked and sometimes didn’t. And it wasn’t just from a stage; I would use personal stories in meetings and sometimes got a great response, sometimes lost the listeners entirely.

A couple of years ago I learned about a specific way to use my story to create change. In community organizing, public narrative is a practice in which we exercise leadership by linking our own story to the stories of others and to the story of what is needed in this moment. Public narrative involves motivating others to join you in action on behalf of a shared purpose. These stories have detail and structure. They paint a picture of a problem, a choice and an outcome. Listeners see a way forward and are are moved. Told well, moving stories start movements.

So when I told my story recently, I knew that data and evidence was important. But it wouldn’t be enough to move the listener to action.

How do you use your story to create change? Does it feel too personal or inappropriate? What moments show rather than tell what you care about? Learning to craft your story is a leadership skill. Listen to the stories that are being told and see how they affect you.

Do you want to learn how to use your story to create change? I’ll be teaching a class in Stockholm on June 12, 2019. The aim of the program is to help change agents, improvers, advocates and activists learn the skill of using their story of self to connect with others to awaken leadership and engagement. Find out more about the one-day program Public NarrativeUsing story to recruit leaders and build relationships. Contact me for a discount code for my blog readers and other friends. If you’re in Sweden, I hope you’ll join me and my colleagues.

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In the soda aisle

In the grocery store yesterday I passed a dad holding his baby in the soda aisle, right between the ginger ale and the sparkling water. He stood there, babe in his arms, simply covering it with kisses. He wasn’t trying to cajole the baby or comfort it; instead it seemed as though his love was just so big, so overflowing that he couldn’t take another step without letting some of it spill out. It got me thinking about how there was a time when it probably wouldn’t have been OK for a father to feel that much delightful affection for their child, let alone show it in public. We often think about improving gender equality as something that will only benefit women, but clearly as the world has shifted to open up some public domains for women, it has also allowed men to shed private norms that have kept them separate from their whole selves. Emma Watson’s speech to the UN general assembly for her HeforShe campaign makes this argument movingly, but reminds us that we still have far to go.

There’s a parallel argument here which disability activists have been trying to make for years, but which I don’t think we’ve been able to make compellingly: increasing access and inclusion for people with disabilities isn’t simply good for people with disabilities, it’s good for people without them too. Opening up my world to a wider range of difference in others has meant that there’s more room for me to be me. It’s easier for me to accept and even love myself and all my differences when I get the chance to know and love others for theirs. When everyone belongs, I belong too.

The disability movement, with its push toward the concept of inclusion in schools, housing, the workplace and greater society, has made some inroads. As with the movement toward gender equality, we still have a long way to go. Until then, I’ll simply have to be grateful that I got to learn the lesson first hand long before it makes its way into the mainstream. Lucky me!