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

Join the National Agenda For Supporting Families

In March 2011, I was lucky to be among a group of ~30 people who convened in Racine WI to discuss a national agenda for supporting families with a member with intellectual and developmental disabilities. Why? The role of the family is central to individuals with intellectual and developmental disabilities across the lifespan. More so than ever before, the family provides medical, behavioral, financial, and other daily supports — these roles are vital and often policy and practises do not recognize them, support them, fund them, etc. As families become the singular central support unit, policy has to emerge to recognize the validity of their position and families have to become equal partners to the policy dialogue.

I’ve attached the full document from this event. It is worthwhile reading. In particular the statistics are highly relevant and we should really consider how this impacts policy on a go forward basis

• In the US there  are more than 4.7 million citizens with intellectual and developmental disabilities.
• More than 75% of those are living in the community without formal disability services, relying on families for various levels of support
• Of the 25% receiving services, over 56% live with their families (in some states that is 80%)
• 28% of children with disabilities live below federal poverty levels (compared to 16% without disabilities)
• Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities
• Over 58% of parents/caregivers spend more than 40 hours a week providing support for their loved ones (beyond typical care) — 40% spend more than 80 hours a week.
• Long waiting lists for services and the increased lifespan of individuals with I/DD have contributed to a growing number of individuals with IDD in households where the primary caregivers are themselves aging.

The systems of old evolved out of an institutional model. The systems of today have to be designed to include a focus on models supporting families through the lifespan of their loved one.

“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society.” The Developmental Disabilities Assistance and Bill of Rights Act, 2000

I encourage you to read the full document and start a conversation: SUPPORTING FAMILIES Wingspread

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

David’s 50th Birthday Party!

David’s “Family” at his 50th Birthday Party

On St Patty’s Day we celebrated my brother David’s 50th birthday.

About half of us were able to make it. Yes, believe it or not what you see here is only half of us! It was a wonderful day, a lovely event and people are talking about it. I hope that when everyone thinks of the day they will remember it as David’s birthday but I think that already the idea that it was David’s birthday is evaporating and people are really remembering it as a family reunion. That key here is that it was a memorable event because it was a family gathering with David included actually at the center of the gathering.

Back in the day — before mom and dad passed away — everyone used to come “home” for the holidays. Brothers and Sisters and their spouses and their children would come to the house and spend time there. There were so many of us that families would come in rotation. Even still, come they would. Now that our parents have passed away, we don’t have that family “hub” that we used to have. It occurs to me that for the majority of our family we have not seen each other in any major grouping since those days. And they were long ago — before 1994, 1996.

At the beginning of the party we took a moment of silence in quiet contemplation of all those who have passed. Our parents. Our brothers and sister. Our grandparents, aunts and uncles. Looking around the room the “little ones” who used to sit at the “children’s table” are all grown up with their own little ones. It was shocking to me that we are now the elders!.

My nephew Christopher set up music and a playlist with his iPad. He was the “DJ” for the event. I was standing next to him and he said something like  “I dont know anyone here. I’ll bet others don’t. Are you going to get people talking?” And so we began “calling” — getting the little kids to come up and answer questions like who can do spock fingers and other recessive gene traits. More than 50% of the people in the room have light colored eyes. 30% can do a clover leaf tongue. And the blonde spot at the back of the head is more prevalent than most let on.

The best part of the day of course is that David loved every minute of it. He loved being the center of attention!

He loved having people read to him… Several people read David his birthday cards…. He loved being the center of the photos, although his fave is with his girlfriend Gina. Every time David is looking away in the photo, follow his eyes and you can see that they are glued on Gina. He loved dancing with his brothers and sisters (and Gina!)

After Party!

And he loved the after party. The after dinner.

The night time remembering the party.

Wishing us all many more days like this.

Here’s to David Joseph, Happy Birthday, old man .

Loving Memories of Kathy “Kat” Fialkowski

Unfortunately rumors of my sister-in-law’s passing are not exaggerated. Neither is the sorrow or the depth of grief. I find it mind numbing and I cannot speak about it. What can one say about “gone?” I read the  Obituary of Kathryn M Fialkowski and I think how can I describe her life? Her meaning to me? It leaves me ruminating. Reaching back and replaying old memories — such small etherial things. Moments. A life comes down to little fleeting moments that someone recalls.

I can’t really remember a time before Kathy. She and my brother dated before he went to Viet Nam, in ~67. They got married when he came home, around 70. I was 6 years old. When I was in elementary school I would spend long summer days with Kathy in their apartment. Some people thought I was their first child. After all our names were the same… same spelling… and surely I look genetically tied to my brother.

I was a klutz when I was little. Falling down all the time. At their apartment, Kathy let me help her paint some wood furniture. I accidentally fell onto the freshly painted furniture. I was devastated. But Kathy just laughed and got out the paint brushes, handed me one and said “lets get to work.” “Projects” might just define the last 50 years. I would come to the house and say, what have you been working on? We’d walk around together and look at her latest project: refinishing a piece of furniture, decorating a room, renovating the basement. I guess the American Warriors Watch Coalition was her biggest project — touching so many lives.

About 40 years ago, I remember a rocking chair she was working on — Kathy was getting ready for her first baby. Kathy would hold the baby (Danielle) in her arms and sing Put Your Head on My Shoulder – she sang it better than Paul Anka. Her voice was strong and pure and she had perfect pitch. Later I learned that Kathy’s mother had been an singer. Clearly the voice was gifted to Kathy as well. When I think about her, I hear music. She had music in the house, the car, singing to her grandchildren. I think of the various songs she sang. And happily, I recall the operas we saw together at the Met. Kathy introduced me to Turandot. Beautiful memories I have of her — all with voices soaring to the Heavens.

Kathy was an adventurer. I was so surprised to learn that. Many years later I was at their home for a celebration — their baby daughter Jeanine’s beautiful wedding. We were sitting around shooting the breeze and I was describing my apartment in Paris. Kathy said that she would love to see it. I said, “come on” and she said “okay.” I thought “yeah right” but that very night Kathy started planning her trip to Paris! One morning, I remember coming into my living room in Paris. Kathy was having a petite cafe, standing at the french windows… the windows open, the curtains and her silk dressing gown gently blowing in the breeze, her head leaning back and she was grinning ear to ear. She was in her element. It was the first of many trips together. New York, London, Paris, and various spots in Italy. Kathy loved the planning, loved the trips, and loved bringing them home. In Italy there was one suitcase that weighed about 300 pounds full of “bringing a little something home.”  I have so many visual memories of those days. The cafes. The Cathedrals. The Piazzas. But if you look around her home there is only one tiny 3×5 picture of her in her travels, by the Arc d’Triomphe.

Words that remind me of Kathy: La Dolce Vita. A La Famiglia. And Joie de Vivre.

There are many people we meet in the world who are limited by something in themselves — their past, their roots, their upbringing, something .. and then there are those extraordinary few who acknowledge who they are and also find the courage to soar above all the noise to become themselves — uniquely themselves. Kathy was just such a person.

May we learn from my sister, Kathy… may we all have the courage to soar.