“And when we speak we are afraid
Our words will not be heard
But when we are silent
We are still afraid.
So it is better to speak.”
– Audre Lorde
So begins Sue Robins’ book, Bird’s Eye View: Stories of a Life Lived in Health Care. Robins is someone I have yet to meet, but I’ve connected with her through social media. As a Canadian author, health care advocate and a mom of a son who has Down Syndrome, Robins shares stories from her experiences. Her words remind of the power of story, both for the giver and the receiver.
One of the reasons I set out to write about faith and disability was to give faces and names to the word disability. I’m reminded of the neighbour who saw me at the store, and said, “Oh, you’re the house with the wheelchairs.” Furthermore, I have lost track of how many times people have referenced our family in conversation as “the family with the two disabled kids.”
Wired for this
Shortly after Rachel was born, I spoke with a mom who had two older children with disabilities, and she wisely encouraged me not to hide. Her own experience had taught her that people will not help if they do not know the need, and people will not know how to respond unless they hear the story. Because Rachel and Janneke were not able to verbalize their stories, I took that advice and chose to share glimpses of what I called our story. Interestingly enough, Janneke’s sounds are now increasing in volume and range, leading me to wonder if she’s trying to tell me her story.
As humans, I believe we are wired for storytelling. Author and speaker Brene Brown writes, “Storytelling helps us all impose order on chaos – including emotional chaos. When we’re in pain, we create a narrative to help us make sense of it.” Particularly in the early years of Rachel and Janneke’s life, I was almost desperate to learn their stories – and to share what I could. It was cathartic for me, to find a way through what felt like chaos. For when I shared the mess, I felt a sense of relief, and I was able to see the mess take a shape.
Yet I am reminded of the danger when others try to create a story as a way to help. In the first chapter of I Choose Adam, by Adam’s dad, David Winstrom, we read of Adam’s birth and his diagnosis of Down Syndrome. To the dismay of David and his wife Jetta, the doctor and nurses created stories that included how the baby would be better cared for in an institution. Winstrom writes, “Adam was not even 12 hours old, and we were being told that our son would not talk or walk, would not be able to care for himself or have any friends.” Tremendous risk and hurt occur when we tell stories that have yet to happen or are not ours to tell. (You’ll have to read the book to learn how Adam’s story really unfolded!)
There’s a tension between storytelling and narrative voice, particularly when the storyteller is vulnerable, or the story is not fully understood. Sometimes we take advantage of stories that are shared and use them to create fame instead of awareness. We must be mindful of who owns the story. In our desire to know and be known, we cannot forget to listen in the context of love.
Ultimately, stories change us, affecting our emotions and re-shaping meaning. The glimpses of stories my children offer remind me that both sharing and listening, often in the middle of what seems messy and chaotic, is not easy – but it’s so necessary. As Ariele Leve says,
“We tell our stories to be heard.
Sometimes those stories free us.
Sometimes they free others.
When they are not told, they free no one.”