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Fall 2006 Table of Contents
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Telling Your Story: What's the Point?

By Jeanine Pinner, Training & Outreach Coordinator, Texas Parent to Parent

Abstract: A parent leader shares her strategies as for using story-telling to influence decision makers concerning issues parents think are important for their children with disabilities.

Key Words: Family, Parent Leadership, Advocacy Skills, Evidenced-Based

Editor's Note: Story-telling has long been used by effective parent leaders as powerful tool for helping decision-makers understand their issues. The phrase "influencing the heart to influence the head" comes to mind. Recently, the national focus on promoting evidence-based effective practices has given a new importance to recording success stories. Documenting successful outcomes with stories can help provide evidence about what works. Jeanine Pinner, with expertise pulled together through research and extensive personal experience as a parent leader, has spent the past year training other parent leaders across the nation to master the fine art of story-telling.

A few weeks ago, I attended the Texas State Autism Conference in Dallas with my son, Jake. Our keynote speaker was Taylor Crowe, a 25-year-old self-advocate who has Autism. Over 2000 people listened intently as this extremely impressive young man talked about his life as a person with Autism. Although we all heard the same words and felt many of the same things, I'm sure that we each also left with a little different "take" on what we heard and saw.

Through a video, we were privileged to see Taylor as a baby, a toddler, and finally, a young man. We saw Taylor before and after the onset of his Autism and listened to the experiences and perspectives of several of his family members. After the video, Taylor's father spoke about their lives together, adding yet another dimension to our understanding. When Taylor took the stage, you could practically feel the anticipation of the crowd. He didn't let us down! Taylor shared not only the events of his life, but his thoughts, feelings, regrets and dreams. He was amazing!

I watched and listened both as a mom and as an advocate for people with disabilities. I was impressed with Taylor's poise and eloquence, his open heart and his willingness to share his journey with so many others. Although my son is already making his own journey very successfully, it was inspiring and reinforcing to hear Taylor talk about his. This was exactly what I came to hear and see!

As an advocate who helps others learn to tell their own stories to make positive change for their children and in systems, I admired the numerous tools Taylor and his family utilized to tell a story that covered 25 years in little over an hour. They utilized technology (the video) to cover a lot of years of Taylor's life and development. When Taylor spoke to the audience, he relied very little on the hard copy in his hands, making it clear that he had worked very hard on his presentation. Every technique used to share Taylor's story was centered around his strengths and gifts.

My son, Jake, listened as a self-advocate, and as I shot sideways glances at him (so he wouldn't notice me watching him), it was clear that he was listening intently to every word. Through several later conversations with Jake, I came to understand that he identified with many of the experiences and feelings that Taylor talked about. He realized, once and for all, that he wasn't the only one making a journey with autism, that he shared many experiences and feelings with a lot of other people. There was a new bounce in his step and a more confident air about him.

The keynote session was full of service providers, too: teachers, therapists, psychologists, social workers, administrators … it was obvious that they were also inspired by Taylor's message. I'm sure that many of them were thinking of the young child with autism back home that they work with, and now they were seeing that child with a slightly different vision … one of even higher expectations and possibilities. Taylor's presentation touched the hearts of many people that day, and surely demonstrates the awesome power of telling a story and making it personal!

I first began to put our story together when my friend Tracey, who's an Autism Specialist, asked me to co-present an autism workshop with her for a group of regular and special education teachers, sharing the parent's perspective. It was scary, initially, but then exciting!

An opportunity to share what was in my heart with people who have a huge impact on our kids—wow! I wanted them to know how important they are to all of us, and that most parents treasure a positive and meaningful partnership with their children's teachers. I knew that if they had an understanding of where Jake "started" and where he is now, they would want to know how he got there. I worked hard to develop the story in a way that would convey to them just how powerful an impact they could have in the life of a child with autism.

The first couple of times I told this story to a group, I got a little teary-eyed and choked up for just a moment. It was a little like reliving the journey, with all the joys, roadblocks and successful arrivals coming back to life. I told my children's story with pride because they worked so hard to accomplish their goals, and to live lives of their choosing. From time to time I ask my children for their permission to continue sharing their story. It is really their story, after all.

It meant a lot to me (and still does) to use these precious opportunities to let people who work with our kids know that they are absolutely essential to our children achieving their own visions of success. I also wanted to remind them that no one works harder than our children, and that their desire to be successful is a critical part of achieving that success.

My reasons for telling my daughter's and son's story cover a lot of ground and vary, depending on the audience. As an example, when presenting it as part of a workshop for teachers or parents, my overall goal is to emphasize how important it is for a child with a disability to have a really good support team. Their story also demonstrates other important points. To list a few…

Putting 20 years' worth of experiences, feelings, and learned lessons into a short story was not an easy task, but focusing on the outcomes I desired from the intended audiences and the setting of the presentation helped a lot. I thought about it for a long time before I actually started. I have to actually visualize things before they make sense to me, so as I thought about the 20+ years the story covered, it began to come alive.

The very first time I told our story to teachers, I knew it had touched some hearts when I saw a few people wiping away tears. That connection meant that their hearts were wide open to hear more about the magnificent difference they could make in the lives of our children. (Actually, they already know it … they just don't hear it from us often enough!) Tears from parents sometimes mean, "Someone else understands how I feel", or "I'm not alone!"

Effective storytelling is one of the most basic and valuable tools in an advocate's tool box.

I guess I always knew instinctively that telling a story to illustrate a point was effective, and I've used this technique all my life. Until I started sharing my children's story in an advocacy setting, though, I never really thought about it much or recognized it as a tool. Now, I see stories everywhere I look _ in the newspaper, magazines, emails, television … they're everywhere and they bring the subject to life.

Keep it simple … keep it short … make it interesting … repeat the top 2 or 3 key points often.

The points I focus on at any given time may change and depends on the audience. In order for a story to make a positive impact to affect change (whether in an ARD/IEP meeting, the state legislature, or with an acquaintance), it is important that the listener "connect" with what you're saying. Make it real! When the listener "connects" with some or all of your story in a personal way, it becomes a shared experience … they begin to remember their own experiences, those of a loved one, a friend or an acquaintance. Connecting in this way makes the story so much more powerful and makes the outcome you desire more likely!

Make it personal!

Most of us will not remember the impressive facts and figures we heard at a presentation or read in the newspaper, but when the tally sheets and legalese are translated into how something affects one or more individuals, our ability to understand and remember is far greater. We tend to remember those personal details about people and experiences far better (and longer) than the statistics because we identify with them in some way. We may not always remember the name of the speaker, but we frequently remember a story they told to illustrate a point they were making.

I'm not saying that statistics aren't important; I'm just saying that by themselves, they only tell part of the story. Make the statistics meaningful by making them personal! Bring the statistics to life for the listener by illustrating how they impact the life of a real person.

"You know, as a preschool director, the connection and empathy I feel with others—parents and professionals alike—is so powerful when I hear stories that connect somehow with my own. I get tired sometimes of hearing broad statements about how important collaboration is in thinking about family-centered services and programs. What really makes a difference for me is when I hear stories about what happened today at the center … what kind of difference we made in the lives of the families we serve." (Gabbard, 1998)

Choose the most effective way to share your story for its greatest impact.

Is that verbally? Putting it in a letter? Creating a Portfolio for your child? How about a narrated or captioned videotape showcasing your child? Sometimes, it's who is telling the story that makes the most powerful statement—is it you or your child, a self-advocate?

Be clear on what your purpose is for telling the story.

Is the purpose of telling your story geared to generating a specific response or outcome? Or, is it to make people think about something in a different way? There are times that omitting a specific conclusion so that listeners draw their own is the most effective method to use.

Whatever method you choose to tell your story, take time to practice telling/showing it to a family member or a friend who will give you honest and constructive feedback; pick your toughest critic. Here are some questions you can ask of your critic:

Some questions to get feedback (Gabbard, 1998)

So what's the point? Telling your story effectively and making a difference by making it personal … that's the point! Happy endings to you all!

"For the sakes of our children, we must strive to be patient with those whose experiences have not given them access to our perspective. It is our duty to lead these people to a fuller understanding of the beauty and ability within our children. To do this we must become effective advocates." (Bollero, 2002)

Resources to check out

  1. NECTAS. Early Childhood Bulletin, Spring 1998. "Family Experiences: Ways to Lead Change Through Telling Your Story", by Glenn Gabbard <http://www.nectac.org/~pdfs/pubs/famexp.pdf>
  2. Center for Public Policy Priorities: real stories of Texans affected by state budget cuts and/or changes to state programs and services. <http://www.cppp.org/real_stories.php>
  3. Disability discussion forum for stories about awareness, rights, inspiration. <http://www.tell-us-your-story.com/>
  4. Stories from young people with illnesses and disabilities. <http://www.girlshealth.gov/disability/stories.htm>
  5. A variety of personal stories at Foundation for People with Learning Disabilities. <http://www.learningdisabilities.org.uk/page.cfm?pagecode=FBPS>
  6. Disability Experiences: Writings and Perspectives is a collection of writings that have been submitted and links to websites that share personal disability experiences and the perspectives of people with disabilities. <http://www.new-horizons.org/expwri.html>
  7. A collection of stories and photographs of people with disabilities and faith. <http://www.beliefnet.com/story/196/story_19631_1.html>


Bollero, J., (2002). "8 Steps to Better IEP Meetings: Play Hearts, Not Poker". The Special Ed Advocate Newsletter. Issue 165. <http://www.wrightslaw.com/advoc/articles/iep.bollero.hearts.htm>.

Gabbard, G., (1998). "Family Experiences: Ways to Lead Change Through Telling Your Story." NECTAS Early Childhood Bulletin. Spring 1998.

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