The Power of Storytelling

On Friday, we had a convention for The Arc Maryland. I’ve been to, hosted, and created so many conferences that I can’t even count them. I was prepared for this to be another one — a lot of work and generally fatigue ensues from the sheer physical output required to manage the work leading up to it and also managing through the day. What really happened was nothing that I was prepared for.

They key to The Arc is that it connects real lives to public policy so that policy is influenced by real needs and policy makers clearly see the connection between their work and the humans that are impacted on the other side. What this means is that the most powerful thing we, collectively, can do is tell our stories. It takes a LOT of courage to tell your story. Most of us are private people and the heart of our personal story is a very private matter. It includes hopes and fears and beliefs – intimate things that we don’t typically tell to general population let ‘lone in a very public setting: like in front of hundreds of people!

I remember the first time I told mine, as a sibling. I was at Temple University many  years ago as a panelist at an adult Sib Shop hosted by Don Meyer (http://www.siblingsupport.org/). On the panel I was way to emotional and broke down in tears. It was the first time I spoke out loud about intimate things like my mothers death, the feeling of lifelong responsibility that I have for my brother, fears that I would not be able to manage, that something would go wrong “on my watch” and the things that I have given up in my life so that I could manage some of the caregiving responsibilities for my parents, for my brothers. It was overwhelming and I felt it was inappropriate to be crying in front of strangers and I felt ashamed, actually.

But at the same time the story resonated with people and I realized that some of us have to share our stories and I honed it and got more comfortable “living out loud.” To be honest, I’m not perfectly comfortable. It’s still scary – telling things out loud that are your secret thoughts. Recently I shared the “R-word” story. That particular memory, I can tell you is one I would rather forget. It was hard to relive it and harder still to share it: Kate’s R-Word Story

Each and every time I tell a vignette or give a speech, I can’t help but reflect on my mother. When I was a small child, I attended Town Halls in the basement of St Valentine’s Church. I went to City Hall. I went to school board meetings. All of these tugging at my mother’s shirt tails (literally) and sitting patiently in the back of the room while she stood at the podium and gave a heart wrenching account of real life. I was 4, 5, 6 years old. It really was our life she was talking about and I sat there watching how other people were reacting. People without children with disabilities had their mouths hanging open. Was our story unique?

I watched my mother as she wrote out her story little bits here and there on scrap paper around the house — after getting down on her knees and scrubbing the tile floors. Or after dinner. So tired she would nod off after a few lines. Now I understand that it wasn’t just the time involved that made her take this a scrap at a time. It was the effort. Exposing herself a little bit at a time, all around the house on these scraps. My mother would go around later and collect these notes and sit down at our old Corona typewriter and painstakingly type up the speech. As we drove to the grocery store on Saturday morning her lips would move as she would rehearse her speech and I was there when she finally delivered it. Our story actually was unique. There weren’t many people, back in the day, admitting to having 11 children and two with disabilities? But my mother stood in front of the room and told the story out loud. To strangers. And she did it in a way that everyone related to her. Everyone understood the common humanity in the story. The common sense. Politicians and family members alike and I can tell you something — not one person that met my mother or saw her speak forgot her. They didnt all agree with her but she impacted every single one of them. She “contaminated” them with emotional discomfort and once someone has it –that feeling in their belly– they are propelled to action.

On Friday, at our state convention, people shared their stories over and over. Sometimes it was people telling a story on behalf of someone else in recognition for the work they did. Sometimes it was a “coalition” where each party told the back-story to what happened behind the scenes. Sometimes it was individuals standing up and telling their own story. Or sitting down, quietly and sharing their story in a quiet corner for our video camera — a testimony captured.

To tell your story, you do not have to be eloquent. You do not have to be articulate. You do not have to, necessarily, be calm and composed. You have to do something even harder — you have to be genuine and vulnerable and exposed. Our state convention went far beyond a professional conference. It was all about personal empowerment. Empowers yourself, celebrating your strength, and inspiring others.

I have traveled around the world, been to famous art galleries, seen opera in Rome, famous jewels in the London Tower, models on the runway in Milan, and breathtaking vistas in the Swiss Alps or on top of the Great Wall of China. But in all my travels I have seen nothing so beautiful as Joyce giving her acceptance speech for lifetime achievement, Kathleen talking about her steps to employment, Vicki celebrating her work as an interviewer, Carol sharing her story meeting the governor, and Steve quietly sharing for the video camera in the story booth. The most beautiful and unique thing in the world is each person’s life as it unfolds and the beauty is disarming. I felt honored to have been a witness to such beauty.

I’d like to share two powerful examples of storytelling and I hope you take the time to watch them…

Temple University Visionary Voices, The History of the Movement via Storytelling

Steve Jobs 2005, Stanford

Testimony to the PA House of Reps Human Services Committee

House Human Services Committee 3/29

I am here to testify because all that my parents dedicated their lives to build is unraveling.

Circa 1980

In the 1970′s my parents fought for the right to education
In the 1980′s they fought for deinstitutionalization
In 1989 they fought for family supports
In the 1990s they fought for standards of care in group homes — a direct result of the choking death of my brother Walter
In the later 1990s my mother fought for employment opportunities.
Can it be that it is 20 years later and we are fighting for the same things?

 

 

Without question you must refuse the regression caused by cuts.

Walter Fialkowski

We cannot go back to the presupposition that individuals with ID deserve so little
We cannot go back to the presupposition that individuals with ID should be labeled with a capital R and stored in warehouses
We cannot go back to the presupposition that individuals with ID should be kept, plumped, and patted like pillows
We cannot go back to a time when children with DD are kept from the classroom, shut out of neighborhoods, harassed, abused
We cannot go back to a time when individuals with ID/DD died at 22 for lack of nurturing, torn from their family as small children, often deprived of medical care. Or, like my brother Walter, who died at 32 left alone to choke on a peanut butter sandwich.

 

David Fialkowski

My extraordinary brother David walks — they said he never would. Graduated though they said he’d never go to school. Lives in the community despite being shunned. He has had a job, volunteered, and self represented. He loves the Phillies, Jazz, and Swimming. He has started using an iPad to make choices. And we expect another 20-30 years in front of him even though last weekend 50 of us gathered to celebrate his 50th birthday. 50 though historically he would have died at 22.

I refuse to give up on his value. His potential. His civic rights.
YOU cannot give up on him. When you consider the budget, you must consider his human capital.

You must hold the line.
You must not cede the progress that Pennsylvanians like Marion, Leona, and Walter Fialkowski gave their lives for.

You must remember that YOUR decisions are OUR consequences.

Thank you.

 

Postscript: We must never forget the history of our movement. We must stand up and recount the battles, the victories. We must share with each other and stand together in advocacy. We must, collectively, ensure remembrance of all that has gone before and all those who have gone before. We have not yet arrived.

 

Good Day in Harrisburg

Mentors

Know Your History

Visionary Voices at Temple University:

http://disabilities.temple.edu/voices/trailer.asp

Suffer the Children (Pennhurst): http://www.youtube.com/watch?v=YG33HvIKOgQ

Sibling Update: It’s a Wonderful Life

I know it’s heresy to say this but, here it goes: I hate the movie “It’s a Wonderful Life” with Jimmy Stewart. I never liked the thought that life had passed him by and here’s why he should be happy anyway?! On the other hand, the one part of the movie I like and agree with is that our lives are all interconnected and you can’t know the impact of one life on the lives around it. Small pebble. Big ripple.

My Happy New Year Post is a tribute to that movie and to list the impact my brother David has had on me. Really, my life wouldn’t be a fraction of what it has been without my brother David. He taught me so much, it’s long overdue that I give him credit.

David taught me

• One person can make a difference. And that single individuals when united can move mountains. All grass roots movements start with one individual here and there and then it builds. This was the original form of social networking expressed to the point of power.
• Plan all you want. But, know that life happens. Be prepared to throw the plan out the window. Bend and go with the flow when you need to. Maybe something better ensues. For example, made a plan for a visit with David to Longwood Gardens. Traffic. Trip takes too long. David fed up! Okay, abandon plan! That’s cool. Coffee and donuts at Dunkin Donuts?! Sounds great!
• Try, Try, Try again. For 10+ years my mother taught David to walk. One day he got up and walked across the room. Never give up.
• Focus on the outcome not the task. Working 15 years of IDPs has taught me that the team has to be united on the outcome. If so, we get there. Focused on the task? All you get is the task.
• The bigger the universe, the less “atypical” we are. Really, wiki estimates there are 100,000,000,000 languages on this globe! So, in the global universe, vocalizations are NOT atypical forms of communication. Think about it. Broaden your world.

Because of David, I

• Have had a terrific career as a transformational change expert
• Have thrived living and working around the world
• Have unlimited hope
• Believe that all people have unrealized potential
• Think that the most precious commodity is “options” not money
• Never give up

So, I want to share with you… the gift of life lessons to siblings can be differentiating. They equip the sibling to live in a “global” world and this will be even more necessary tomorrow than it was yesterday. And finally, I want to say it IS a wonderful life and EVERY life should be celebrated.

Celebrate this New Year!

Yours in Community,
Kate

A Sibling Position Paper, Well Written, Thoughtfully Shared

A position paper from Siblings in Salt Lake  City Utah. The article is a thoughtful position from siblings and I think, does represent a generational discussion. I cannot reproduce the entire article as the copyright prohibits it. But I do recommend you click the link and read the whole article

From:  Eric Mitchell is director of community relations for the Disability Law Center. Laura Boswell, an attorney for the Disability Law Center, is also a signatory.
To: The the thousands of Utahns who have a family member with a disability.

Excerpts

“We are siblings of persons with intellectual disabilities, and we work as professional advocates as a result. We help families, friends and clients navigate the complex web of supports and fight for their most basic rights. At the point in time that our parents are no longer able to care for our siblings, we will have primary responsibility for their care. We have agreed to continue our parents’ legacy of supporting our loved ones at home. We do not accept this responsibility lightly. We know all too well of the emotional, physical and financial sacrifices our parents have made to ensure that our families remained intact.

Most siblings we know do not believe that our brothers and sisters should be placed in segregated institutional settings that were created long before supports were available in the community. No matter how clean the facility or nice the staff, living in a 12- to 260-bed care center is something we simply cannot and will not accept. We believe that separating our loved ones from family members, their communities and natural supports is wrong. We respect the fact that families have few options and these decisions are heart-wrenching. We know the infrastructure is not currently in place to meet the needs of all Utah families, but this is a problem we can solve, if we choose to.

It’s time to work together to find the best use of limited public funds and community resources in order to support the needs of the next generation of people with disabilities and their families.”

 Please read the full article: Salt Lake Tribune, “Caring for people with disabilities calls for unified efforts”

Hello Utah, I salute you! My two-cents added? I criticize not the families who previously had no options. I criticize not families today that are in crisis. However, I still believe not one more child should enter an institution. There shouldn’t be a need for that type of placement in today’s society. I do think we can do something about it. And, as siblings young and old, this can be OUR legacy.  Where do you stand? It would be so much better if we stand united.

Yours in community,
Kate

Sanity “Moments of Truth”

When I worked in business, we had these things called “moments of truth” — the moments when the business “touched” the end customer. And that touch — regardless of who did it, told the “truth” about the company. About how they work, what they value, how good their processes are, how flexible they are dealing with problems, etc. These “moments of truth,” through time, meant that a business could be a raging successl or suffer horrible losses because of how in tuned they were with their end customers.  As times have changed and we’re now well into the “Information Age,” we have 1000 ways to learn about those we serve and various means to maintain this information over time and build upon it.

“Customer-engagement is critical for the success of an organization and in a knowledge-driven economy, the power of information cannot be underestimated. ” (Fast Company)

“The key to achieving emotive success is understanding the customers’ needs and expectations. By doing so, companies can identify the most important interactions – “the moments of truth” – and prioritize delivery accordingly. The IBM customer experience framework integrates four key dimensions: emotive performance, products and services, tactile performance, and channels and touch points” (IBM)

I’m in a new field, now.  A field in support of families and individuals with developmental disabilities. Many in this field are supposed to be ”advocates,” who must manage needs and expectations on both sides (individual/system) and must do so with an emotive connectedness.  As in business, there are some who are in touch with the individuals that define their work and there are some who are just  in touch with their work — the day-to-day tasks without sight of the people they are impacting. There are some who are, unfortunately, removed from the day-to-day lives of these individuals. And then, like customer-service agents and sales people in business, there are some who got too close to the fire for too long and burnt out.

I have the best job in the world. Every single day I have the opportunity to talk to an individual or family member. I do not have the luxury to talk only to the ones I know. Or the ones I like. Or the ones who share my opinions and beliefs. The phone rings, I answer. Someone passes me on the street, I talk to them. We’re hosting listening sessions and I work to get people with various perspectives out to talk. “Let’s hear it, let’s hear what you have to say, what your life is about, and what you’re concerned about.” And these are all moments of truth.  Two observations:

• We’ve stopped listening. Just like the political landscape of today, we’ve stopped listening to what people are saying. Instead we paint them in a white hat or a black hat and put them in camps “for” or “against” our perspective. We need to listen. We have got to have meaningful dialogue about difficult topics. In business we say it takes “5-why’s” to get to the root cause of an issue.
• We have a generational divide. The “old-timers” were here in the beginning. Pioneers of the movement. They remember a time when there was nothing. No rights to anything. There are the “new-timers” who know nothing other than having rights. For the new-timers, IDEA has always been around. The old-timers fear that things can go back to the way they were before. The new-timers don’t know there was a “before” — its only theoretical.

Sanity Rally on the Hill

Last week I met a guy at the bus stop named “Joe.” He said he was in the Special Olympics and the last soccer game of the season was this weekend. I asked if he was sad the season was over. “Yes, really sad,” but he was smiling.  ”You don’t look sad,” I said. “Well, that’s because Basketball starts next weekend!”

We continued chatting on the bus ride. Joe lives at home but has a job 5-days a week in food services with the Marines. He goes to the neighborhood diner on Saturday mornings. And in the middle of this conversation he explained that he was very afraid because he has a surgery coming up. He remembers a time when he reacted badly to getting a needle (kicked out) and as a result he was thrown to the ground, face down, with someone sitting on him and forcibly restrained. Hmmm. This conversation had a lot to digest. In one conversation, one person, we were trying to satisfy all levels of Maslow’s hierarchy simultaneously! Psychology, Safety… Self-actualization. 

We have to create opportunity for “moments of truth.” We cannot close off perspectives we don’t like. We must continue to talk. We must understand our common grounds. We cannot ever stop listening.

What’s your truth?