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

Sibling to Sibling: Feelings of Guilt

When I was a small child, I went everywhere with my mother. Mostly we went grocery shopping. That’s what we told my dad: “going shopping.” Really we went to homes of other parents who had children with serious disabilities. My mom was a great resource for people — people who were housebound because of the needs of their child. I remember going grocery shopping and then “just stopping by” someone’s house while we were out. These were really check-up visits where my mom checked in on her friends, brought them much needed groceries, and had a cup of coffee with them. As a result my earliest recollections are of being surrounded by individuals with various significant disabilities.

I’ve never shared this with anyone, so it’s our little secret, okay? At some point I starting hiding upstairs and “practising” various disabilities. I would go blindfolded. Stuff my ears. Hop around on one foot. Not talk for a full day. My father caught me one day. I didn’t know he was there. I was blindfolded and had plugged my ears. I had advanced to multiple disabilities. He grabbed me by the shoulders and when I took off the blindfold it was quite shocking to look at him. I thought his head was going to pop off his neck. I could see it getting bigger and bigger like a cartoon. My instinct was “run for cover” but he still had hold of my shoulders. He spoke very quietly and slowly… “Jesus…Mary…and…Joseph…what…are… you…doing?” Stuttering I explained that everybody has some sort of disability and I wanted to be prepared when it was my turn. After saying a prayer, he “sat me down” to talk about it. He told me that he prayed that it would never happen. And if it did, we’d deal with it then but it wasn’t something any of us could prepare for. Just because they had Walter, they really were no more prepared when they had David. I listened to my Dad’s advice. I stopped practising. But, one thing I didn’t share with my dad that day was that from my first moment of conscious and reflective thought, I thought: “that should be me. ” That I was the one who was meant to have disabilities, not David. Statistically, the youngest of 11 children. My father 52, my mother 40 when they had me. What were the odds that *my* development would be more typical than David’s?

SURVIVOR GUILT! 

Guilt can stop you in your tracks, or it can propel you forward.  You may be the primary caregiver, or you may be a sibling who has never even met your sibling with developmental disabilities. In either case (or anywhere in between) you may feel various feelings related to your relationship with your sibling. For myself, I have recurring feelings of guilt, and I work to deliberately manage through them. Here are a few tips that I have found to help me continue to move forward:

• Name it when I feel it. Ah, the guilty conscience. When I can name it, I can figure out why I feel that way and at least try to do something. I’m a do-er. I always feel better if I at least try to do something.
• What is it other than guilt? Don’t be afraid to dig deeper. What else am I feeling? Anger? Resentment? Frustration? Sorrow?
• Give myself permission to have the full range of emotions and don’t get angry with your self for not being your “best self.” My “best self… the vision of the ideal caretaker.. is my mother. Now that’s something impossible to live up to!
• Make sure your behavior is aligned to your values. Whenever I cross over the “value” line, I feel that in my gut right away. I call this the “gut check” and I always know there is something I need to do in my own behavior when this has happened. I remember the one day when I was in elementary school and my brother’s class was paraded across the school yard. It took me by surprise. The class never ever came out when everyone else was out. I was prepared at home, on the street, on our porch. But, I wasn’t prepared at school when the school kids started chanting the “R-word.”  I did nothing. Paralyzed. I was sick with myself for, well, forever (gosh, it still makes me sick when I recollect it). That never happened again. I was never unprepared again. Gut check.
• Oh, I guess my last personal tip is: Confession is good for the soul Hence this blog post! I feel better already! Share with others. It might not be within your family but you can always share with the sibling leadership network: http://www.siblingleadership.org/

If you are a parent with younger children, you might want to take a look at sibshops: http://www.siblingsupport.org/about/copy_of_index_html. Get your children talking to others in a safe environment. Like me, your children probably have things they would never confess to you.

If you have any recommendations to share with others, I hope you will post them here.

Postscript: You know, the upside to my survivor guilt?1) I believe that every life has value — mine would have no less value if I was born differently 2) In addition to value, I have the opportunity to give my life meaning. 3) I wake up everyday giving thanks for what I have .

Yours in community,
Kate.

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

Giving Thanks: A Sibling’s Perspective on IDEA

I am a sibling. For most of you, this simply means I have brothers and sisters. In my — recently adopted and mid-career change — world this means “I am a sibling to an individual with a developmental disability.” I was the last child born in our family (#11) and my brother David is 2 years older (#10) and my brother Walter  was 11 years older (#5).

There is no portion of my life that is a time B.D. (before disabilities). On our first day of school, I was 4 David was 6 and my brother Walter was 15. We went to school together. It was the first public school classroom in Pennsylvania for individuals with significant developmental disabilities. (Pre-dating PL 94-142, my mother fought for innumerable years to allow my brothers to go to school and eventually won the opportunity to set up a “test” classroom.) I spent my first day of school as a peer mentor to a 5 year old girl named Sandy. Sandy followed me around. It was quite annoying. I asked my mom to tell Sandy to stop following me around and my mom said “why don’t you teach Sandy some of those songs you sing?” I sat with Sandy and taught her singing and clapping to “Miss Mary Mack (all dressed in black).” Eventually we went on to acting out the Billy Goat’s Gruff climbing up and down on everything we could find. The teacher would come over and tell me not to do this or that with Sandy. It never occurred to me that Sandy “should be able to do this” or “couldn’t do that.”  Sandy was Sandy.  I promptly ignored the teacher (a character trait that was immediately embedded in my psyche) and we had marvelous adventures together.

It would be dishonest to say that I didn’t have some bad days. When we won “mainstreaming” (the Right to an Appropriate Education for All), I was definitely put out. David went to my elementary school and I had to go check on him during the day. This was hard to do because he didn’t come to the schoolyard at recess. Didn’t come to the cafeteria at lunch time. I had to ask for the bathroom key and go find what little room my brother was tucked into and try to understand why he was strapped into a chair. It was a lot to make sense of for a little child.

40 years later. I met one particular young lady this year. She reminded me of Sandy in her exuberance. She is 13 and was born with developmental disabilities. She has always been in school. She has always shared a classroom with other students. She has a good chance of going to college, if that’s what she’d like. And she is already planning the apartment she will have when she is grown up.

I know there are many battles still to be fought. I know that there is still much improvement needed to ensure civil rights for all citizens. But on this Thanksgiving, I give thanks to all those parents around the country who separately were united in creating classrooms and education for children with developmental disabilities –regardless of the severity. I give thanks, too, for the early lessons I learned such as mentoring, teaching, and sharing. I give thanks to my mother for encouraging the quality that allows me to imagine everything possible. I also thank my mother for being my role model — ignoring “authority” figures and just doing what is right.

35th Anniversary of IDEA, Thomas Gilhool Receives Lifetime Achievement Award

Read the history: If you’d like to read about 35 years of progress on the right to education, refer to this link from the Dept of Ed. If you’d like to read about the PARC v Commonwealth of PA refer to this link

In loving memory and eternal gratitude to Leona and Marion Fialkowski and Walter Fialkowski.
With continued thanks to my brother David for daily life lessons.

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?