Transitions: C’est la vie

I know I haven’t added anything for a while. I’ve been struggling with a major life transition and its been a little too fresh to comment on it. If you read this blog, I think you understand. When going through a big transition, I need time to get perspective…to back up away from the details and see the big picture.

My life transition? This year I’ve taken a new job in a new state. It means a big transition for me but it forces my brother into a transition as well. Our lives are intertwined, I impact my brother’s transitions — residential, day, work, whatever. And my brother impacts mine — the people I date, the jobs I take, where I live.

Recently one of my sisters commented to me “Katy, you have your own life and David has his.” And it reminded me that my parents always said the same… that David has his own life and each of the sibling have their own life. But it’s not really true. We are not completely separate. This is not good. Not bad. Just different. How can I not consider that my move means that I am not as present? That it means that I have to call into meetings and I am not there in person. That it means that while we spent the day together at Christmas, we didn’t spend the weekend together as we usually do? I know this impacts David and it will impact the services and supports he receives. And in fact we’ve had one of the worst years ever in terms of David’s “day program.” — This coming just after one of the best years we ever had. How can I not attribute that to the move? It’s the reality and we simply have to work through it.

Honestly, I don’t feel guilty about it. I don’t often feel guilt anymore (though I confess that was something I felt a lot in the beginning). Now it is more that I have to work through my concerns and do some serious problem solving. It’s going to take a while to negotiate the waters of this transition. Transitions are, by definition, stormy. In the end, it’s going to be good, I know it is. I can already see glimmers of it and it is early days. One of my sisters is participating in going to David’s planning meetings. We’re working with Temple University on getting David’s iPad2 operational. And with the iPad2 some of my other family will be able to “visit” with David virtually via FaceTime. It will be good.

The big picture? David turns 50 this March. If I remember right, back in the day the typical peak age for a male with developmental disabilities was, sadly, 20-something. My brother Walter only lived into his 30′s — tragically dying in a choking accident. This year we are getting together to have a big celebration for David’s 50th Birthday. We will all be there to celebrate the value and meaning of his life, his successes, his relationships. “C’est la vie.”

Yours in community,

Kate

My Role Model Today: Self Advocates

My mother was my role model. Often times this is the case for daughters. But especially for me. I tagged along everywhere with my mom. I was the last one home and my mother finally had some time to get out of the house (after raising 10 kids) and she bundled me up and I went along with her. I remember going to the Board of Education. City Hall. Harrisburg. Washington DC. Picketing. Marching. Meeting. My first school room was a pilot school room started by my mother. A trip to the grocery store also included a trip to other mothers’ houses — where my mother brought them groceries. A walk to the corner was taking the policeman a cup of coffee. My mother was civic minded. Involved. And a visionary leader. When it came to her passion — equal rights — she was unequaled in her foresight, ability to engage and encourage. She was understanding and hope. In short, she was an astonishing woman. I aspire to be a fraction of what she was. I have a long way to go.

When it comes to my brother David, my mother was my role model. To be good in my job as his advocate, I tried to do what I thought she would do. What she would have wanted. And this has taken me very far.

But in reframing how I see and treat my brother and subsequently reframing how others see and treat him, my current role models are self advocates I have met.

Let me give an example. My brother David requires foods that have been very finely chopped. When we go out (conventions, other people’s houses, meetings, restaurants) they do not typically have finely chopped food. Or soft moist food. His food comes. (Sometimes i ask the kitchen to chop it but then it comes back not chopped enough anyway) So, the food comes, I lean over and chop it up. I taste it to see if it’s too hot. I take food from my plate and give it to him. I never thought anything of this. Sharing food, plates. That’s what we do in our family. (I remind you, we had 10 kids and a lot happened over food!) Anyway, my friend was sitting with us at one event. She happens to have Cerebral Palsy (as does my brother). She said, hey Kate, you want to chop up my food next? You want to taste it? And I looked at her and she was totally jerking my chain. I had to step back and look at myself and say, hey what am I doing? Would I do this to her? If she wanted me to cut up her chicken, I would but I wouldn’t do it like I was feeding a baby. And that’s what I was doing with David. I acknowledge it takes a while to break a habit you’ve had for 40 years. But it was a self advocate who helped me take a step back and look at myself and start the process.

Self advocates are teaching me the presumption of communications. That everyone “talks” and we have to learn how to listen better. That its okay to ask a person how best to communicate with them. Self advocates are helping me be more patient which is hard to do in a world of 30 second sound bytes. Self advocates remind me daily to be inclusive — meaning to actively engage everyone in the conversation and not just allow them a seat at the table. Another friend stops me from saying “hon” and consistently reminds me “I have a name, use it.” and I noticed that sometimes staff around my brother don’t use his name like he is an interchangeable object du jour and I so get it! And in a new field where everyone seems to hug, its my friend James (he has said i can use his name) who reminded me just yesterday that many individuals with developmental disabilities have been victims of sexual abuse and we need to think twice about all this hugging. In fact, it was James and his reminder that pushed me to write this blog! (Thanks James)

Now I want to confess that all the things I’ve been learning require a change in my behaviors. And that takes time. But, I’m working on it. I’m working on it. So, my friends, keep telling me, keep sharing, keep showing. I’ll get there.

Parents have done a great job making room for their children. But it’s their children who are showing me that they are not children for life. Self advocates, thank you.

To know a man, walk a mile in his shoes? We cannot truly walk in the shoes of self advocates. We cannot. But we can sit next to them as they recount their story. Listen and watch and learn. And allow their experience to change our path. A journey starts with one step and I am on the road!

It’s called a movement when it’s moving Here we go!

Yours in Community,
Kate

What is a “Quality Life”?

David and I keynoted at the Pennsylvania IM4Q training in Harrisburg yesterday. (well, I keynoted, and David has a bad cold but joined us for lunch). Thought others might be interested. We welcome sibling thoughts on the subject…

IM4Q Harrisburg 07-2011

Taking the role of David’s primary advocate has been challenging and often confusing for both of us.

• Who am I now? Am I a sister? A friend? A parent? A case worker?
• How can my “power” be used to support David’s willpower? Does it override his? Am I overstepping? What choices are David’s and what choices are mine?

These questions are very profound and get to the heart of civil liberties, civil rights, and personhood. Great philosophers have struggled with these questions! Thomas Jefferson, Martin Luther King Jr, Pope John Paul II. I mean, these are serious brains who’ve struggled with and posed these questions through the ages. But for us, they are not just intellectual questions. David and I HAVE to work out the practical answer to these questions — our daily lives depend on it!

In thinking about my role, I think it comes down to this: Does my role enhance David’s “quality” of life?  Notice, I don’t ask if he is HAPPY. I ask if he has a quality life and does my role contribute to that.

What is the Definition of a Quality Life?

Pope John Paul II said “People with disabilities must also be enabled to participate in social life as far as they can, and helped to fulfill all their physical, psychological and spiritual potential.”

So what is a quality life? It is about participating in society and striving to reach your full potential.

Our Beginnings

We grew up in a row house in Philadelphia with 10 children, 2 adults, 3 bedrooms, 1.5 bathrooms and a dog. Our mother and father knew they were looking at the end of their lives and made the decision to place David in a community living arrangement. David moved to a house with 4 other men. 5 men, 3 bedrooms, 2 bathrooms, 2 stories. A big improvement ! (Even today, I measure my quality of life by my wait time to get into a bathroom )

Our mother visited every day and David came home on many weekends. Our parents aged and eventually my father passed. And just before our mother went in for heart surgery, she took me aside and made me promise that I would never move David. That I needed to respect the fact that the people in that house were his family. So I never even thought about moving David. To do so would have been to defy my mother’s deathbed wishes. She had the best intentions. And she was right, in theory…

But we didn’t factor in change…  I didn’t visit every day. In fact, I lived in France. David went from daily family involvement to minimal involvement. Staff turned over. A couple of the roommates changed. And eventually I started noticing some big changes with David. The most noticeable of which was that David stopped sitting on the couch and started scooting on the floor. He refused to walk anywhere and so he was getting pushed in his walker everywhere. We thought shortly he would not be able to walk anymore. David was afraid! The house was crowded. He managed to lower his risk by lowering himself to the floor! Finally I had an epiphany. This lightbulb appeared over my head:

You are here to serve David not your mother!

I knew that something had to change and we looked for a new house for David. David’s new house is a single story, fully accessible rancher. 3 people, 3 bedrooms, all on one floor. By the way, his roommates happen to be two women! He has a very beautiful yard. He has his own private space and his bedroom has enough room for his own sitting area. Once David moved to this house, there were several changes to his behavior. First, David has started walking more, longer, and more frequently — independently meaning alone and without a walker. He gets up and goes to his bedroom when he wants some personal space. The second thing is that David started vocalizing more to express himself with words! As children,David used to speak. Imagine, there were 10 children and 2 adults speaking to David every single day. He used to speak. He could say our names, hello, goodbye, ask to drink and eat, and various other things. He stopped talking all together when he went to school. Infrequently he would make sounds like words forming in his throat. It was very rare. To hear David expressing himself with his own voice! I can’t tell you how overwhelmed I was.

But, while a good home contributes to helping David fulfill his potential, is it enough?

Taking Risks

Even still, every day I am worried. When the phone rings and the provider calls I hold my breath for their first words. Hopefully they are “everything is fine.” And if everything is not fine?

I received a phone call once. They did not say “everything’s fine.” instead they said “Davids in the emergency room.” I don’t recall the drive to the emergency room. I do recall seeing David with a gash on his head from front to back. I was there when they stapled his scalp and held his hand when he screamed in pain. And I saw red in my eyes and tasted copper in my mouth.

A part of me wants to bundle David up. Keep him safe. Tuck him away someplace so that no one will hurt him. But I have to acknowledge that David is not a baby. He is a man. And he must participate in society and fulfill his potential. So, we have to take risks.

• David goes to baseball games.
• David takes long car rides — like coming here to Harrisburg.
• David goes swimming at the YMCA.

All of these things are activities with statistical risks: drowning, falling, car accidents. The world is rife with risk! But David has become a member of his community and has grown as a person through these risks.

Helen Keller said: “Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved.”

To  protect David from risk is not kindness. For David to go into the community and try things. See if he likes them. See how he grows from them. Potentially fail. Potentially get hurt?

To Risk? This is to live.
I have to allow David to live. And through his doing so, he has and he’s become a man of character.

Adding Value

He might be a man of character. But if David lives his life to his full potential, is he a man of worth? Does David “count?” Does he matter? A person with more severe disabilities, what is their worth?

This year was the first time I personally met people who thought of people with developmental disabilities as objects. Who saw them as pillows to be fluffed or taught to fight like pit bulls. There are people who believe that people like my brother are nothing but an object and treat them accordingly. These people focus on what David cannot do. They describe him like a checklist, like a diagnosis. what are his toileting skills, his vocabulary, fine motor skills, hours of support required, ambulation. They expect nothing of David.

In our time, in our beginning, there was nothing to expect. In our beginnings there was only the option of institutions, being hidden away. People were locked in rooms and even basements. Hidden from society. Low life expectancy and no life. To stay with the family, to be outside in the daylight, on the porch — well, that was considered something extraordinary back then.

If going to a baseball game or out on a boat is “better than nothing” or “better than sitting at home doing nothing” — Well, when we measure “quality of  life” as better than nothing? It’s just wrong. In one of my careers, I was an expert on quality. All those metrics. We call it a baseline. The expectation to which we measure things. For people with more significant disabilities… to have a baseline of  NOTHING?

But, this man, my brother David

• was involved in the PARC court cases and was in the first schoolroom in Philadelphia for people with severe disabilities — (predecessors to IDEA)
• marched on City Hall and Harrisburg (innumerable times)
• survived the death of 2 parents and his brother, Walter
• lives in a house with 2 women.
• goes to the YMCA, has memberships to the Art Museum, Aquarium, Longwood Gardens.
• loves the Phillies and gets tickets to baseball games.
• loves music especially jazz and blues and oldies and especially live music
• and he has done 5 presentations this year
• he has changed the world for countless others.

Don’t you think that’s SOMETHING? I’d say David adds a LOT of value! He is a man of substance. We must acknowledge the contributions of our friends and family with intellectual and developmental disabilities. We have to call attention to it. And we have to thank them for all that they have given to us: their family, friends, and community at large. And we must raise the baseline of expectation. We should not measure our success based on “better than nothing” but on “achieving potential.”

Goethe said: “If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.”

One thing I learned this last year is the difference between the two perspectives is in our own minds, not in the capability of the man.

Hope and Action

To live life to full potential. In society. To risk. To grow. That is a quality life. We cannot stand in the way of this. And, to be David’s primary advocate I have to do more, I have to encourage it, foster it, fight for it. When successful, the sun shines brightly…

Martin Luther King Jr said “Let us hope that the dark clouds of prejudice will soon pass away and the deep fog of misunderstanding will be lifted from our fear-drenched communities, and in some not too distant tomorrow the radiant stars of love and brotherhood will shine over our great nation with all their scintillating beauty.”

 

END NOTE: Session participants know that one additional segment was in the live speech… a discussion of technology and self-determination, inclusion, and social networks. As I’ve done other blogs on those topics, I omitted them from this material.

Postscript

There was a man who spoke to me at the end of the speech. He said, “I’d like to meet your brother, he sounds like quite a man.” At lunch David, his support staff and I were walking down the hall. The man and a few other people came up. I was able to introduce the two.  The man took my brothers hand and told him how he heard all about him this morning. He recounted what he heard and David’s accomplishments. He thanked David for the value that he contributed. The rest of us? We were there to bear witness to humanity at its best.

Update on the Sibling Mini Course at Temple University

Note: From the Temple Institute on Disabilities website… Photo, Presentation, and link soon to be added.. Thanks to Celia Feinstein and Temple for the opportunity to present sibling perspectives. Thanks also go to sister Mary Bisignaro and niece Camille Bisignaro for coming to represent the family.

April 2011

Philadelphia, PA—The Institute on Disabilities at Temple University hosted its Mini Course/Lecture Series event—”Siblings: Moving Beyond the Parent/Child Relationship”—on Monday, March 28 featuring speakers Kathryn Fialkowski and her brother David presenting to a standing-room-only audience of more than 110. A Philadelphia native, Kathryn, and her family, has led grassroots activism for the right to education, community living, and employment for individuals with developmental disabilities. She is currently a Joseph P. Kennedy Jr. Public Policy Fellow placed at the U.S. Department of Health and Human Services Administration on Developmental Disabilities in Washington, DC, working on grassroots strategic planning and self-advocacy organization.

A highlight of the day was the presentation of the First Annual Fialkowski Disability Studies Award to two Temple University graduate students.

In the morning, Kathryn and David shared their emotional journey, moving from a “typical” sibling relationship to one where Kathryn became the caregiver. During this frank and sensitive discussion, Kathryn offered insight about transition from parent-led support to sibling-led support and navigating that process.

In the afternoon, a select panel of siblings of people with intellectual disabilities discussed their experience into their role as a sibling and that of a caretaker.

During the event, the Fialkowski Disability Studies Award was presented to two Temple University Graduate students for “work exemplifying the mission and vision of the Institute on Disabilities at Temple University and for demonstrated excellence in the areas of community inclusion, integration and disability rights.” The Award is given by the Fialkowski family “to assist young leaders in furthering their growth and commitment to the field of disability—personally, academically or professionally.”

Recipients of the first annual award were Lindsey Martin and Christopher Wickman. Lindsey Martin, who will receive a Master of Fine Arts from Temple University’s Master of Arts in Film and Media Arts program in May 2011, has been a graduate extern at the Institute for several semesters. She has worked with a number of project managers at the Institute and in doing so, has learned a cross section of the disability field, from criminal justice to leadership development to inclusive education. As a final project in her Disability Studies class, Lindsey co-produced Every Speed, an experimental short documentary that explores ideas about body movement, technology, and dependency. The film has been screened at the Society for Disability Studies Conference in June of 2010 and at the Association of University Centers on Disabilities Conference in October of 2010. The film was also a recipient of Temple University’s Distribution Completion Grant.
Christopher Wickman will receive a degree from Temple University Beasley School of Law in May 2011 and has been an advocate for people with disabilities during most of his secondary education, beginning with his time serving on Executive Board for the Council for Students with Disabilities. During his tenure as Graduate Extern at the Institute, Chris worked with the Policy/Law assistant director to help research the impact on people with disabilities of proposed policy changes in areas such as health care, education, waiver and other topics. During the fall 2010 semester, Christopher hosted “Embracing the D: The DisAbility Civil Rights Movement and Crip Culture,” which presented a history of the disability civil rights movement, the current disability culture, and current social and legal issues important to people with disabilities.

Speaking “On Behalf Of”

This is something I struggle with constantly: what’s the right thing to do when “speaking on behalf of my brother?”

 

My brother David and I have a unique sibling relationship. Though there are many siblings in our family,  I am David’s primary advocate. I am often in the position to put David’s needs and desires forward in some formal matter, for example, getting them into his annual supports plan. In these cases I think of myself as his advocate and representative.

David can express himself and he does communicate what he wants. But he has a unique language and for some things you have to be around David a long time to understand what he is saying. You have to be patient in the moment. And, of course, you have to be listening. In an east-coast, sound-byte society, David’s voice gets lost. And as his voice gets lost, little by little David erodes away. Drifting out of lives of family members and friends. Losing old relationships. Isolated. Eventually succombing to a routine established by the provider program. David needs support so that his “voice” can be heard.

Over these many 15/16 years I have really struggled with figuring out how to represent David while not diminishing him. There are two extremes on the spectrum. At one far end, self-advocates call it “speaking for ourselves” and while I am a fan of that particular thought, I just don’t know how to employ it with my brother. At the other end of the spectrum, I’ve heard parents say “I am my child’s voice” and “I speak for my child.” I struggle with this position as well. Both are extreme points of view.

I’ve tried to find the middle ground between the two. My personal key is to enter those settings extremely conscious and intentional about communications. Whenever I am in a setting where I am advocating for David before I speak, I break my thoughts down like this:

Who are you really representing at this particular minute?

1. Is this something in which our family has a strong belief? If so, then I see these as moments in which to share our belief system and to ask people to adhere to our beliefs. For example, we believe in community inclusion and therefore we fundamentally that David should be a valued member of society and our desire in planning is to help him achieve that goal. This is the basis from which I entered all early annual Individual supports meetings. I was set on upholding what my parents wanted.
2.  Is this something David has expressed an opinion about? If so, I see these as teaching moments where I can put forth David’s opinion and help people see that David has expressed that opinion. For example, I have seen how David reacts adversely to being in large crowds of people pressing forward. He has a whole series of behaviors, vocal and non-vocal that make his irritation, discomfort, and even ire clear. Therefore, I can say “David doesn’t like this and this is how he shows it. Therefore, let’s not do that.” On the other hand, David loves going to the Diner. We know because when he goes there he is relaxed, happy, smiling, laughing etc. Therefore, let’s schedule the corner Diner on a weekly basis. The more time I spend with David and talk to his staff then the more I learn and the better I can represent his own opinions.
3. Is this something in which I have a personal opinion and desire and I think my idea is good for David? Ah, this is the most tricky one. I got David a membership at the Art Museum. Does he really like going to the Art Museum? I do not know. I do try to be clear in my own head that this is my idea and not David’s idea. Why? I have a bias that people are not stagnant. They grow and to grow you have to take risks. The latter is an important key. With my ideas, I try to find opportunities to expose David to new things and then to watch him, listen to him, and learn about him. After which I feel that we can then see what else he likes, wants, needs etc. and pump that back into bullet 2.

I don’t know about you, but balancing me/he/we is a real tough thing. I don’t always get it right. But I never stop trying to get it right. Oh, and I never stop asking “Who am I representing? Who is this for?”

Yours in community
Kate