by Diane Glass
Christopher Maier, in his essay “Creating Community Through Storytelling,” included in The Power of Words, states that “…storytelling builds community, or at least helps the process when the conditions are right over time.” “I’s” become a “we,” he said, when there is “sufficient shared assent to the virtual experience of the story.”
During the last year and a half, I have worked to create that sense of “we” among adults born with spina bifida in the 1940s, 1950s and 1960s, before treatment was widely available. Most babies born in this era died. A few lived and I am one of them. (Spina bifida is a birth defect in which the spine does not close and in some cases the spinal cord protrudes out the back. It often creates problems with mobility, continence of bladder and bowels, learning disabilities, sexuality, and other life issues.)
“True communities not only share stories within their circles, they also reach out to include others. They fight not only to maintain what they have, but also to create a vision of hope for others.”
No one knew I had spina bifida until I began talking about it after my breast cancer diagnosis in 1999. Before cancer came along, I thought spina bifida complications would kill me. Cancer taught me that predicting how death would come is impossible and irrelevant. Isn’t the point, “How do I want to live?”
This insight made me long for a community of my own that had experienced spina bifida. That desire began my journey in 2016. I traveled Iowa, Minnesota, and Nebraska to locate adults with spina bifida and visit with them in their homes. Over time I completed thirteen such interviews and taped them. Judy Olson, another adult with spina bifida, accompanied me on several of the trips. At first hesitant to reveal facts about their lives, the people we interviewed quickly opened up.
“I thought I was the only one who survived,” a man in his mid-40s said.
“Wow, you’re old,” another man said when I told him my age (69). “I didn’t know you could live this long with spina bifida.”
“Can I take my picture with you?” a younger woman said, eager to show her family and friends that life beyond 30 years of age was a possibility.
Would Christopher Maier consider this interviewing a process for creating community “when the conditions are right,” I wondered.
When this work led to a presentation at the Spina Bifida Association of America National Conference in Bloomington, Minnesota, Judy and I shared the stories with a lively audience of caregivers, adults with spina bifida, healthcare professionals, and parents. Some of the adults we had interviewed came along to tell their stories in person.
The 57-year-old man who had never been away from home by himself made the life-changing decision to attend the conference.
“I’ve never seen so many people in wheelchairs,” he said. “I almost felt normal for the first time in my life.”
The 45-year-old man who had never met another adult with spina bifida started his own Facebook group for adults with spina bifida after returning home.
The severely disabled woman in her 50s found a caretaker to go with her. She ardently advocates for adequate Medicaid support for people with disabilities.
A man with spina bifida who had abused drugs most of his adult life and was now “clean” shared his story publicly for the first time.
The Spina Bifida Association of Iowa made this possible by funding the expenses of these individuals. With these stories Judy and I produced a video in conjunction with videographer Ryan Paul Buck. You can view it at www.sbaia.org.
During this time, Christopher Maier’s question continued to challenge me: Is this project setting the stage for community “when the conditions are right”? Are we a “we” yet?
Returning home, several of us decided to form an adult committee of the Spina Bifida Association of Iowa, meeting by phone since travel is difficult. We would like to organize a retreat for next summer, including teens as well as adults.
This interest in going beyond our immediate circle to serve others persuades me we have formed a community. True communities not only share stories within their circles, they also reach out to include others. They fight not only to maintain what they have, but also to create a vision of hope for others.
My own life has become richer during this journey. I understand my own history in greater depth. I am deeply grateful to be alive as I approach my 70th birthday. I am less lonely now that I have become part of a “we.”
Diane Glass serves as a spiritual director, helping individuals find meaning and purpose by listening deeply to them and encouraging reflection. She teaches at the Des Moines Pastoral Counseling Center on the role of the body in revealing our life stories. In October 2015, she published a memoir, This Need to Dance: A Life of Rhythm and Resilience (Amazon). She co-founded Tending Your Inner Garden®, a program of spiritual growth for women in transition, in 2003. (This is her first blog post written in part to fulfill the requirements to receive a TLA certificate.)