Advocacy Development

Since I began to deal with the obstacles inherent in having a disability, I have taken many paths in advocating for myself and those I care about.  One of the most rewarding directions I’ve taken was when I served as a fitness instructor for people with and without disabilities.  People didn’t realize how much their bodies were capable of accomplishing.  So, in each and every class I taught, I empowered my students with my "I can do" attitude.  I tried to make each class very enjoyable and carefree.   In retaliation, my students in the adaptive aerobics class would take the time to playfully batter with me as I counted out the number of repetitive repetitions to the exercise movement we were doing to the rhythm of the music.  They found much amusement and light-heartedness in trying to pull one over on me.

In my private work, I have been a part of helping many clients grow and develop not only their physical abilities with their specific limitations, but , I have witnessed  their self-confidence and awareness soar.   Despite my so called barriers, I have found a way to rise above and conquer and share. I have found ways not only to encourage and inspire, but to feel very grateful myself.

Thanks to my dance teacher, Al Gilbert, and my dear mama, I have been able to rise above many stumbling blocks and give of myself in ways no one else has.  It has been a sincere gift to be able to use what I learned throughout the many years of my life, in dance, aerobics, and physical therapy, and give to others unconditionally.  These life giving lessons have shown me that having this disability of Cerebral Palsy has not only helped me to develop myself, as a person, teacher, mentor, advocate, published author, but help others in ways no one else might be able to or admit to. 

My disability, and its so called inherent disadvantage or weakness, however you want to call it  has really turned out to be a blessing in disguise.

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The Hidden Cost Of Our Cerebral Palsy

We are all aware of the struggles which many people with disabilities undergo.  What we may not be aware of, is the unpleasant fact that those of us without cognitive disabilities suffer a hidden cost.  This cost is the reality of having to deal with a support system designed to maintain each of us at a subsistence level.  Experts simply cannot understand that we are capable of great achievements, given real support.  Too often, one set of options is offered.  These represent old outmoded ideas. 

The system has to be maintained.  This means maximum control for "helpful" overseers.  I am tired of it!  FED-UP, OUTRAGED, and APPULED!    There is something very, very wrong about the system which waist time and money trying to do the impossible with those going nowhere, while, ignoring the genuine potential of so many of us.  We are treated worse than dirty dish rags! Hit bellow the belt, and patronized beyond words.  It is SO SUBTLE and SO DESCREITE that only those that it is being done to see it. 

The words "realistic" and "independence" are used to whip our thought process back into line.  It is ridiculous that I have spent a life-time having to prove "my rights" to exist!  It is also stupid and ridiculous that a student with a master’s degree can’t get Ph.D funding while people who write about phone sex are considered "cutting edge."  What is WRONG with this picture?

It would be far more comfortable to sell out, and spend our lives in front of the squawk box, but I am not going to do that!  We are going to soar, speak out, ride the wave, and conquer all.  We are not going to let these people in positions control our every move, though, and goal.   We are not going to stand back ideally, and let them step and stomp over our breath.  We will own our own right to control our own destiny!

We are going to be activists and advocates for ourselves, and show the world that our thoughts, feelings and goals count.  We are going to be recognized for what is truly RIGHT and JUST, and,we will be regarded and respected even thought we may have a physical disability.  We are going to change the world and how the world see us-   We are going to  speak out-  Yell to the highest mountain top to be heard, and not let these people, "in power" which are our blockade stand in out way-   Some how, some way, we will obtain our own destiny!  Some how, some way, we will be heard and seen and the road will be made straight for us.  We will be accepted and treated the way all men and woman deserve to be treated. 

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The Pied Piper’s Taps

The Pied Piper’s Taps:

Al Gilbert, the legendary “Pied Piper of Dance,” was born, Allesandro Zicari, on July 12, 1921. Al came from a generation in time, when people valued one another and truly cared. During that time, people really seemed to genuinely treasure one another’s friendships and supported their endeavors. This was in an age and era without technology. Thus, people reached out more to one another. They talked, were friendly, and neighborly, and they built relationships and bonded. They tried to make life easier, more palatable, and they freely and without reservation lend a helping hand. People, of this era also assisted by helping unconditionally to those that were less fortunate.

Al Gilbert, affectionately known as “Uncle Al, Star Maker, Dance Educator, and “teachers’ teacher” career lasted well over 60 years. He was a no-nonsense instructor who inspired and motivated all. He was internationally known, and could simplify steps in a way no one else could. “At a time when nothing like it existed, Music works website says it best…Al’s revolutionary vision to create instructional dance material for dance instructors and their students generated a trend that changed the entire dance industry.” Al codified syllabi for tap and jazz and made a long, lasting impact on the dance world. From the earliest days, when he worked side by side with his brothers, on the back street-corners of Rochester, New York, Al Gilbert made dance even more accessible without even realizing it.

It was 1954, a beautiful spring day, in the state of California. My mother was driving down the street, Pico Blvd. in the city of Los Angeles, with me by her side, in our 1952, two tone, blue hardtop, Chevy. Momentarily, she looked up, and spotted a sign. It read “…Al Gilberts Theatrical Dance Studio. Being the progressive thinker and person that she was, she turned the corner, parked the car, took me by my little hand, and walked into his front doors to talk with him. That was well over 45 years ago. It was a very magical moment as he greeted us both. After seconds of entering his door, my mother and I both knew. It was my privilege to be his friend, his student, and become a teacher, who has carried on his precious legacy to our disabled community in so many ways.

There is not much talk or literature on Allesando Zicari, and how Al gave of himself and his time unconditionally to the disabled world. So I will. He helped all that came to him. Even those disabled girlfriends, who I went to school with; whom my mother personally recommended.

Al Gilbert, dance teacher, poet, author, and humanitarian, proposed to come to my handicapped elementary school and give of himself and his talents unreservedly. He was enthusiastic and eager to teach other disabled children, and give his time to our community. Although, even the master in taps that he was- because he did not have a college teaching degree, he was blocked by “the experts.” Time and time again he “proved it could be done” while the experts said it couldn’t! He was a leader in his own right, and made an impact on everyone’s life he touched.

Including mine! I remember that day well. I remember vividly. I was a young toddler, only three and a half years old. And, to remember so vividly, after so many years is truly a blessing. I remember how he unconditionally loved, me, and how he gently took me under his wing and nurtured me. I remember how he taught me to dance, and how he would look down at me with his smile. His kind and mild temperament along with his encouraging words, taught me how to hop, skip, jump and run. He also taught me to point and flex my toes, and gain movement in my ankle that I may never have developed if it weren’t for him. No therapist ever gave to me like he gave of himself. Because of his teachings, and his techniques; my once twisted body, straightened out, along with my left leg. Now, not only did my dragged foot and flopped, out to the side gate, correct itself- But I was able to hang my full length brace up in my closet never to wear it again at the age of 11 years old. His unwavering dedication and devotion week after week, year after year, recital after recital of lessons taken with and without my brace proved to dramatically change me and my physical being.

Gently but firmly, I remember him reminding me to bend my knees; while doing shuffles, shuffle hops, or shuffle bal-changes. I can recall him clearly telling me to turn my knee out for better positioning, and I can remember hearing his voice on his tap technique records. Al gave me a ballet bar too, along with a book about a little girl who had week legs, who got strong again through dance- only to become a ballerina. On another trip, he came back with symbols. His unwavering unique, and loving approach towards me, tried every way possible to motivate and encourage.

Every chance I could while at home, I would practice after all my other therapies lessons were done and completed. So, with discipline, a willingness, and an open –mind, I would put my record player on, only to hear Al’s soothing, voice instructing me as he always did.

I also can remember him making my lessons fun, calling my mother up to have her bring me into his studio for extra lessons, without any charge. He use to say to my mama… “…that Karen’s smile was payment in full… that that was all he needed.” On another occasion, he even began piano lessons. He made this fun as well, as his playful side would come to check up on me and the piano teacher every chance he could. Never once did he let on it was to make my left fingers and hand stronger.

I remember the closeness we had, and how our friendship grew and developed over decades and time. I trusted him, I respected him and his word, and I talked to him like he was my daddy, when I lost my own. He became the temperate figure I looked up to for strength and endurance. He became the rock and pillar in my minds eye to endue all. He gave me a quiet love, acceptance and devotion for not only dance, movement, and rhythm, but he bestowed upon me a burning desire and passion which could not be denied. His love and enthusiasm for music, rhythm, and man-kind was passed on, body, mind, and soul. I knew what I wanted to become, and I was going to become it. I was going to follow Al Gilbert’s footsteps even though I had Cerebral Palsy. I was blessed with the same gift, as Al… I was born to dance just like all the other students before and after me that he endowed with his skill and talent.

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Pondering the Past, and Guiding Individuals Towards Their Future

Pondering the Past, and Guiding Individuals Towards Their Future

Good afternoon ladies and gentlemen, boys and girls. Thank you for inviting me to your school today, and to share with you a part of who I am. This afternoon, I will not only read to you a piece of my autobiographical book,” The Broken Hoof,” but we will move together in rhythm, while teaching, and, I will empower you with some videos of where I have come from and what gifts I’d like to give to all of you. I’d liked to help you learn that “Anything is Possible” if you put your mind towards it.

You are all sitting here before me now, because deep, down inside of your own heart, you believe in yourselves like no one else does or ever has. You believe in your own individual’s gifts and talents. And you believe that you are very special, in a very unique way. Each and every one of you, just like me, I’m sure, has had to overcome challenges and extreme difficulties. We all have these difficulties and obstacles, however, not all of us have the courage and strength, to face up to them, accept them, learn from them, grow from them, and change our attitudes in a positive way, while becoming willing to do what ever it takes to reach the goal we desire so badly.

Today, we will find new techniques; new approaches, and new ways to bring about these changes within ourselves, our attitudes, our beliefs, and our lives. We will begin right where we are now. And we will do it with unconditional acceptance and kindness. We will learn to be gentle with ourselves and our feelings. And, we will learn to accomplish our challenges one at a time. Today we will have some fun exploring ourselves with some of these methods.

We as individuals, have the power to change, along with change the world around us, but only if we have that willingness. This willingness within, will take us on marvelous journeys, but only if we trust this power of belief, then and only then will our accomplishments be unlimited.

When I was your age, the young people who surrounded my world, were all disabled. Why, you might be asking yourself? Well, I’ll tell you. When I was five months old, I got very sick. It left me with the paralysis you see today on my left arm and leg. I could not go to a regular school, because I could not learn like other children my own age. I had a learning disability called dyslexia. This learning problem made it very, very, hard for me to read, write, and do math like the other children in my classes. Thus, I had to go to a school that had children with Cerebral Palsy, like me, polio, multiple sclerosis, down syndrome, and other disabilities.

These were the only young people that I knew. So I had to create different ways to learn. I had to motivate myself, and tell myself that I could pass a test. I had to learn to be open minded. I had to learn to believe in myself, and to believe that no matter what my outer appearances looked like, I could change it. I would keep telling myself that I could change my life and the world immediately around me.

The difference in having a disability now, verses when I was a child, was that the educational system did not have the laws that you have today. I was pushed into classes where I was not learning like the other children around me. And when my mother got the first special education teacher, by talking to the principal, I was put in a classroom, behind a screen, to figure things out for myself, while sitting all alone for hours at a time, to fend for myself.

Finding my dance teacher, Al Gilbert, changed my life completely. Through his caring, gentle, and poised composure, I learned by example what it took to give it to myself, and then, eventually to all of you. Everyone of you here today, are here because you want to be here, you want to change and make your life better, and, you want to find and develop your gifts and share them with the world. This is and can be possible. It is all encompassing.

I would like to share a little bit of the journey I took to try to change some of the attitudes about what people with my disability were able to do. I spent a lot of time trying to put together the pieces of the puzzle called learning. Just as dance had made my body and spirit strong, now I was on a quest to find the tools which would unlock the door for me. Inadvertently, I helped unlock the doors for all disabled people.

I understood intuitively, that I would some day have to ultimately care for myself completely. To do that, I needed a good job. To get that job, I needed a higher education. And, I needed to learn all the things I never learned in 12 years of my fundamental schooling. The people, who were supposed to be helping me, sadly didn’t see thing the same way I did. They felt I should settle for something less than I believed I was capable of. To make a long story short, I fought and won the first Civil Rights Case in California, this guaranteed my right to earn an Associate of Arts degree in English and dance. While I was at college, I found helpers who understood my desire to learn all the things I never learned before.

This now led me to succeed in many different areas. I became an adaptive fitness instructor, an advocate, a published author, and a public speaker. My book, which I am going to read from shortly, was published in 2006, but took over twenty years to complete. And, in its infancy, it won second place in the Kaleidoscope Literary Prose Fiction Art award of 1983. I know every one of you has something to offer and give to the rest of the world. It is all about unlocking it. My hope is that my story and my visit here with you today, is the key that unlocks a door of deep desires for you. My other hope is that you find the power within yourself to succeed and the ability to be positive in every way. I hope that by me speaking here today helps you to find the area, the talent, and the gift you so joyously feel within your heart to give and share with the world.

A Long time ago, I found a poem by a famous British amputee; William E. Henley. He lost both his legs at the age of 12. When I first read these words, in college, these words from Maya Angelou sung sweetly in my spirit. Angelou first sees this as a mark of paternalistic contempt. She is held by a white superintendent in school who has just told her class, to be content to be athletes and cotton pickers. She turns it into an anthem or song of praises for our people and hers. It goes like this… “It matters not how strait the gate, how charged with punishment the scroll. I am the master of my fate, the captain of my soul.

I leave you with these sweet empowering words- take them home with you today to conquer and triumph! Make a positive mark on this world and leave a path behind you that no one else has ever left before.

Thank you for allowing me to share this with you, today. I will now answer any questions that you may have or that cross your mind.

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