Advocacy is a Latin term made up of two words “Ad” and “Voca” which means “amplify” and “Voice” thus advocacy is the process of amplifying the voices of the voiceless. “Advocacy” is often defined by agencies and individuals as a “Systematic and serious process of amplifying the voices of the voiceless”. ~ The World Blind Union
Cavepeople told stories through paintings on stone walls in large caverns. Native cultures told stories through dance, song, rituals, and strong oral traditions. The printed word evolved not that long ago and lead to the development of long-playing records and visual storytelling through cinema. Neighbors told stories over the fence or at the local bar, in schools, and at church. But, how did people with disabilities tell their stories across time? Who listened? Or were their stories told for them and about them?
As a mother and advocate for Mikelle in the early years of her life, I told stories to help raise money for wheelchairs, therapy, and communication devices. I told stories to help her gain acceptance into the regular classrooms in elementary, middle school, and two different high schools. Mikelle graduated Outstanding Senior from East High School, owns her home and has a small business, and learned to tell her own story with the assistance of technology, business cards, and now her podcast.
I took notice of other children, families, and systems and how they told their stories. I sought out the way in which businesses told their corporate story, how fast companies sold hamburgers and watched filmmakers, journalists, and even comedians weave words and images that communicated a message, took me on a journey, and changed me in some way.
Then, I listened to parents of children with special needs tell their stories. Many told their stories, not by the things they enjoyed about being a parent, or their child’s accomplishments.
Often, the stories started by “Hi. My name is Mary. My daughter has spastic quadriplegia, is nonverbal, and has a seizure disorder…” and the list of labels goes on. I see the same thing on social media sites dedicated to a variety of medical conditions and disabilities. I noticed a similar habit in non-profit and government systems designed to support folks with disabilities. They often talked about not having enough funding, too much turnover in staff, being over-regulated. The stories of both groups were more about what we can’t do rather than what we can do. Forgive me, they felt like pity stories born out of some kind of tragic poverty, and people were destined for despair, challenge, and separation from the rest of the world.
However, there were those individuals, families, and organizations that told beautiful stories about opportunity, success, and community. I asked myself, “Why did some do better than others?”
In part, because some folks just learn to tell stories than make a positive change either in their own lives or in the lives of others. They told stories about abundant opportunities, ways to get involved and successes to be shared.
Mikelle and I considered all this when applying for a grant through the Denver Mill Levy Creative Funds Project. We partnered with Jerome Deroy from Narativ.com, who focuses on the skill and structure of effective storytelling with companies and organizations from around the world.
Our focus was to unite people experiencing intellectual and developmental disabilities and organizations that support them in listening, understanding, and sharing their stories in a common structure and skill level.
Check out our podcast and learn more.