What Help’s You to Smile and Be Happy?

For the past two weeks, I have been facing many effaceable emotions. They have been as deep, and as painful as I can ever remember. However, I kept reaching out for something that would soothe my soul. Something that was positive, something that was touchable, that could and would bring me physical warmth, and a feeling of safety, and something tangible that would help me have something to recognize, release, and also would help me recharge my battery – It had to be something calming that could make me feel better, within; something that would bring peace to my heart-

It had to be something that would make me feel better quickly! Something that would ease my pain, and something that would bring me hope to remember the good things about me, my life, and what I knew was right on! It had to be like turning on a light switch- something that would immediately help me to recognize my worth, my meaning as a human being, and all that I went through was not in vain.

You see, I was very down and depressed because my thoughts and feelings were not being considered or taken into consideration by immediate family members. And this blew me away as I think of everyone- every one!

I talked with two of my dearest and closet friends, and while it helped, it did not solve or take away all the pain I was facing.

Then a week later, about two days ago, I heard a song that my dear, mama would sing to me as a child. We would sit together as the music and lyrics played. We would weep through the whole song with the truth that these lyrics spoke.

This is just one of many of my simple ingredients that continually makes me smile and feel blessed with my life!

The song was “Smile” and it was written by Charles Chaplin Jr.. In his lyric’s he says…

“smile, through your heart is aching, smile, even though its breaking, when there are clouds in the sky, you’ll get by, if you smile through your fear and sorrow, smile and maybe tomorrow, you’ll see the sun come shining through for you. Light up your face with gladness, hide every trace of sadness, although a tear may be ever so near, that’s the time you must keep on trying, smile what’s the use of crying, you’ll find that life is still worth while if you just smile…”

As I heard these words, my pain and sorrow melted. My reason, faith, and hope returned, and I was back on track being my beautiful, self once again.

Children’s Hospital

This past weekend, I went to visit my great niece in the hospital. She had a ruptured appendix, and was told to go straight to Rady’s Children’s Hospital of San Diego. So Sunday, around 11:30 in the morning, my husband and I took a two hour drive up there. The traffic was surprisingly good. We did not hit any snags in the road, or get tangled up in any bumper to bumper 15 to 30 minute traffic jams or clogged arteries.

It was the second day that I really began to walk longer distance with my sprained ankle, bare full weight on my foot, and wear tennis shoes. My tendons were stretched to the gill, but It felt good getting out of the house, giving of my own self, and, giving love to someone else who really needed the comfort and care of someone elses concern.

It made me feel wonderful inside going out of my way! It made me also feel wonderful inside that I could give of myself so freely- And, it felt even better being able to give pure unconditional support to a loved one who’s parents could not be their on this particular day.

When I walked through the sliding glass doors, I was suddenly thrown back in time. I was in a time wrap, where I could recall specific events that took place. I was a little, 18 month old child, all over again, yet it was 2008. Being in the hospital made me feel warm and safe. It made me remember my physical therapist. It made me think of how the hospital has grown; as well as gave me glimpses of my past and things to be most grateful for.

Know matter how much I tried to stay in the present moment, when ever there were silent periods of time, I couldn’t stop recalling the time I spent in the Los Angeles Children’s hospital.

Feeding Time

Every morning around 7 a.m. I am awaken by my loving furry friends. It is either Patches kissing me on the face, my sweet Siamese wanting to snuggle under the blankie’s, on mama’s chest, or my recent striped 6 month old, tabby, Cleopatra, nibbling on my hair.

What’s a mama to do when she has a bunch of hungry babies whining ? She immediately goes and feed them! So I get out of bed, get dressed, wash my face, make my bed, and head towards the kitchen. But before I reach there, I usually make a stop, to clean there messy litter box out.

While scooping out their business, I am surrounded by two kitty’s and a heeler/terrier singing to me, to hurry up! When I finally reach the kitchen, I am greeted, by a Siamese cat, Angel, who is hiding in the pantry, because she has learned to open the pantry door by herself, where her food is kept.

I pull out their big plastic containers, where I keep their healthy,organic, dry and wet food, along with their vitamins. I begin the process by trying to dish the food out to them. Some days are better than others, but on most days; I am bombarded by two kitties, who try and snatch a taste of there food before it’s ready. So patiently, one by one, I keep putting them down on the floor, only to rush to get some dry and some wet food in their separate dishes before it is eaten up in one gulp! Finally, after two or three go around’s of taking them off the counter top where they eat, I get it- All their food is plated up, and one by one I can feed them all:>)

Returning to My Untapped Roots

My readers are probably wondering what happen to the gal at Whispers of Hope who write’s those down to earth, heavy, right on, articles? Well, this girl has been busy at work in all areas of her life. I have been busy making myself healthy and whole, along with traveling and gathering information to write more amazing articles for you; as well as working towards new opportunities in public speaking.

I spent the last ten days at sea, seeing the sea of Cortez and the gulf of Mexico. In spite of falling at our last port, Puerto Vallarta, and twisting my ankle, my husband Chris and I were able to see much of Mexico and the way people live.

Despite the poverty I saw, I saw something that really touched my heart. I saw a commitment to man kind that is rarely seen in our United States today. Despite how poor these individuals are, there is still the genuine care and concern about others.

I saw it first hand with me. While crossing the cobble stone streets in Puerto Vallarta, Cars stopped abruptly to wail till I stood up safely. That probably would not of happened in our county. Even when I was a little girl of four, I was not only knocked down by a screaming stampede of five, six, seven, and eight year olds; running like cattle to win a treasure hunt, but I ended up with cuts and scrapes, a locked full length leg brace and a stretch out stepped on body and pancake hands.

I have always believed that people who are struggling understand our situation better then those who never had to struggle a day in there lives. My own experiences have reinforced that which I am learning.

Peering Eyes Watching

When I sit quietly, and think over my life, as a rebel, advocate, and activist with a cause, I remember certain residue of the most frustrating aspect of dealing with my own disability. These remains have been the left over hurt and pain that were caused by the “attention of self styled experts” and people who wanted and had to have control at all cost.

Having been brought up to believe in the truth and goodness in man kind, I was won over, persuaded, and convinced by these so called experts, in the disabled community. These experts exercised restrained management to try and run other peoples lives, and have complete control and say so over our destination, despite what I truly believed was right for me, in my heart.

These experts tried on numerous occasions to impose their authority, their supremacy, and their power in many areas of my life. I personally had to struggle and fight back with everything I had, to ward off their arrogance in obtaining my education as well as in employment. Sometimes, I simply was not taken seriously or sincerely by both experts and those I worked with. My word was not regarded or deemed worthy.

For example, I was falsely labeled mentally retarded on three separate occasions. This was designed to force me to except what one particular expert wanted me to limit my life to. He believed himself to know “all” about what he felt I shouldn’t be allowed to do with “my” life. His opinions were designed around a very old fashioned, out-moded, and passé, concept of what we, with hidden learning disabilities, were supposed to theoretically do. We were sentenced to live life in a workshop setting. We were beaten and battered down to believe that, that was all we were able to handle and receive out of life.

What was even more frustrating was that this gentleman could not work himself without having an interpreter by his side. Who was he to tell me what my dreams and goals aught to be, or how I should direct my live. And, how dear he tell me where my interest lie!

So, the very person who should have been the most supportive, helpful, and kind to me, turned out to be the greatest obstacle of all. One situation at a time he impeded, held me back, and obstructed my future academic progress. It was not

only very irritating, infuriating, and exasperating to have to waste time being evaluated and judged severely, but it limited my future work.

This arrogant, haughty, disturbing attitude was shared by others too! Some of then where people I worked with. You would think it would be different. But this was not the case- as I found out this attitude was everywhere! They assumed that simply because they did not have a visible disability they had every right to make fun of me, belittle me, and minimize my contribution to myself, my life, others, and the world.

Some people refused to allow me to work as I chose and saw fit. They did not wish me to be an equal and productive person in society. These professionals found every way possible to discredit my abilities, my talents, and my aptitude of skills. I had to personally find clever and survival oriented techniques to persuade not only the experts, but those clients I worked with to make an effort to follow instructions.

These struggles resulted from the same attitude which doesn’t grasp our full potential and abilities. I think the greatest thing we can do as a community is to be committed to one another, help in any way we can, and have an active directed life-style. We must retain the right to express our own vision to the world in our own creative, original, genuine way. It is also very vital that we as disabled people are supportive of our own community, and all their dreams, wants, and desires.

Because of my situation, I have been thoroughly committed to giving back all of what I never received from these “helpful” counselors. In every jagged, angle of my journey, I have sought to be a voice when there was no voice for the unheard among us. All of us, in our own special way, ought to find it within the depths of our beings, to give unconditionally, unreservedly, and completely to our total cause. It will harm and hamper many if given with half-measures or haphazardly.

It is truly annoying to think of how much time we all must spend getting around a system that does not work. It wouldn’t bother me so much if I didn’t see stubbornness so many show. The issue is no longer what is best for our own goals, but rather, how to impose the expert’s viewpoint and will upon us. We have the right as children of God, and citizens of a free country, to run our own lives. That must include the right to make mistakes, and learn from them. Our “friendly” experts think they are giving us a better life, but it is too often a comfortable slavery. They do not see with our eyes, and feel with our hearts, nor do they talk the same language as we. Like Sara in “children of a lesser God,” we must retain our will. That may be disconcerting to the normal community, but it is preferable to a life-time spent waiting to be told what to do, or fighting a system that just does not work.

To Have and to Hold

I can’t believe that I have been with the same man, now, for twenty years. Society feeds its disabled son’s and daughter’s the lie that a romantic relationship is impossible. This convenient lie is designed to endorse a comfortableness that we are to remain docile robots for ever more. However, this is not the case. This take’s away our own power, makes us less independent or interdependent on our significant other, and it puts our relationship out of balance.

A marriage, like a job, a hobby, or a spiritual belief, is an individual choice. Many do not feel we are capable of making those choices at all. We are rather to react to the choices made for us, by our enlightened overseer’s. I spent many years trying to find a person I wished to be with. Some men see disabled women as not fully realized, an object off research, rather than a partner. they may seek someone to mold, rather than love. With good intension’s, they may even try to manipulate. It is very important to establish individual autonomy. Your husband or wife is not a caregiver. They want to care for you because they love you, but, they should not try to have an agenda for your daily life. You decide what you wear, what you eat, and the one-hundred other details of living your life serenely and happily. With laughter, hope, and harmony.

My dear, sweet Mama Katie, always taught me that when walking down the street with your man, you should feel proud to be with him. She taught me to show him, and share him with the world. Those were beloved lessons- Lessons I took to my heart.

I learned these lesson a long time ago, way back in my twenties and thirties. I learned not to rush anything in my life, to look for the good, and to be positive in everything I say, do and think- I also learned to listen very carefully to those unspoken words that were not said. I learned to trust my instincts, my intuitive self and inner judgement. I further learned not to settle for the first guy that came my way, to sweet talk me off my feet.

In looking back on these last twenty-one years of my life, I wonder where all these years went as I still feel young, vibrant, and spry. I still have a vigor, vim and vitality for life, and a whole lot more to give. I see with a reflective eye, and a wise wisdom of experiences, like a fine wine sitting in a decanter waiting to be uncorked.

That’s what twenty-one years with the same man, who said he wanted to dance every dance with me. We have lived together, sometimes with rough seas, and periods of calm. All and all it has been worth while and exciting to have a man of truth, honor, and dignity by my side.

My Red Desoto

Just a few weeks ago, I began cycling again, after having toe surgery. It felt so good getting decked out in my biking outfit, and riding down the tree covered streets once again, My husband, Chris, helped me attach my helmet strap, my glove strap, and my feet onto my shoe pedals. And I was good to go-

Who says people with Cerebral Palsy can’t do the same kind of activities as “normal” people do!

I remember the first time I ever got onto a bike. That was back when I was only 8 years old. It was something I only did one time, yet I knew that that was something I’d like to do again if given the chance.

I knew some how, some way, in the depths of my heart, I could do it. All I needed was a little help, from a kind hearted someone. I also knew that all I needed was help with a few technicality’s (like bucking my foot to keep it in place, so it would not move, and protection on my head and hands.) Then, I could ride my bike like any one else- I would then be able to go any where I wanted and ride as fast as the wind would take me. This joyful activity would give me more freedom. It would be yet another way to worked my body out. And, it would bring me much pleasure, contentment, and loads of fun- I knew that if I could get this worked out, then I could do it. There was no question or doubt in my mind. I knew some how, some way, this opportunity would arise again if I stayed positive and focused.

I kept these thought in my mind, till one day, when my husband came home with a surprise gift for me. Chris told me to come out side with him for a minute. So I did. I remember looking up, and there down the driveway was sitting a blue bicycle next to our car. That was about 13 years ago. While standing there and gasping with utter amazement, my heart skipped a beat. I was truly surprised. I was elated, and ecstatically happy. My dream had come true! This gift, was a cherished hope, and a thought of a real possibility, that I too would accomplish one day. Somehow, I kept these thoughts alive in my being until that one, special day, it all come true! It was a quiet prayer and hope that was answered; as I only made mentioned of it once. My husband made this dream come true for me. How special is that! He also made me feel very loved as he made me a very happy girl! However, it is not the bike you see in the pictures here.

The first bike was blue, and sat much higher. When I would ride down hills, it made me feel very insecure, so, one Saturday afternoon, Chris, and I went looking for new ones. We looked in a few bicycle store’s, and then, at the last shop, which was near our house, I found this perfect, beautiful, red Desoto . It was all mine and I was going to take it home with me-

Now, after all these years, I am still riding it and keeping it very shiny with TLC. Chris has made some pedal modifications, too! These modifications help me to petal faster, as well as keeps my foot on. I no longer have to call my hubby every few minutes to fix my foot, and I have more power to push and pull. This helps tremendously when I am on a hill, stop light, or just want to go faster. My foot does not slip out of the strap, either any more- I can tell you honestly, that I feel very secure with my bike, and, I love and adore riding it.

Even though I need some help in order to go biking, I welcome every opportunity I get. It is not only a treat, but something I enjoyed tremendously. It keeps me fit, trim and in shape, and more than that, it free’s my spirit. It makes me feel like a a kid again! I can do what everybody else does. And, It make me feel vibrant and alive! It energizes me,

What’s more, I can visually picture me now, riding along side all the other children in my neighborhood that I would watch joyfully riding down the streets with this carefree, exuberance. Now instead of feeling left out, it has helped made me feel complete… I get lots of smiles and thumbs-up from other cyclist, too!

Now, all I have to do is ask my hubby if he wants to go for a cycle, and off we go! We take my Healer/ Terrier mix breed dog, Patches, for her run as well. It couldn’t be more fun. She runs about a mile with daddy and then rides the rest of the way with me, mommy:>) Lately, we have been doing a lot more riding since gasoline prices have risen. We cycle well over 3 miles one way to our open air market to get our fresh fruits and veggies on Saturday mornings. While other times, we have taken our bikes to the strand, in Redondo Beach, California, and rode all the way to Marina Del Ray, and back. Still other times, we’ve packed our bikes up in the truck, drove to a particular point, unload our two and three wheelers from our vehicle, and off we ride- Last time, we petaled from Venice Beach, CA. all the way to the Santa Monica pair.

During the summer months, Chris and I pack up our brown bag of goodies, and have an ocean front view of the water; while eating our lunch or dinner to the sweet crashing sounds of the waves. We have enjoyed many a meal with the gentle,sea breeze blowing its currents ever so sweetly upon our face.

You couldn’t ask for anything better than that, can you!

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.

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 APPALLED! 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 a dirty dish rags! Hit bellow the belt, and patronized beyond words. It is SO SUBTLE and SO DISCRETE 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! I am going to soar, speak out, ride the wave, and conquer all. I am not going to let these people in positions control my every move, though, and goal. I am not going to stand back ideally, and let them step and stomp over my breath.

Are you?

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.

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 of people who valued one another and truly cared. During that time, people genuinely treasured friendships and supported each other’s endeavors. This was in an age without technology. Thus, people reached out more to one another than they do today. 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 lent a helping hand when needed. People of this era also assisted by helping unconditionally those who were less fortunate.

Al Gilbert was affectionately known as Uncle Al, Star–Maker, Dance Educator, and the teachers’ teacher. His 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.

The Music Works Unlimited website says it best: “At a time when nothing like it existed, …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 dance 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 more accessible without even realizing it.

I first met Al on a beautiful Southern California spring day in 1954. I was three. My mother was driving down Pico Boulevard in Los Angeles, with me by her side, in our 1952 two-tone blue hardtop Chevy. She looked up and spotted a sign. It read, “Al Gilberts Theatrical Dance Studio.”

Being the progressive thinker and person she was, she turned the corner, parked the car, took me by my little hand, and walked through his front doors to talk with him. Of course, she had called ahead, and after being turned down by every other dance teacher in town, she knew Al was eager to work with me, a tiny girl with a leg brace. That was well over 70 years ago. It was a magical moment as he greeted the two of us both. Within seconds of entering his door, my mother and I both knew. It was my privilege to be his friend, his student, and to 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 about Allesandro Zicari, and how Al gave of himself and his time unconditionally, not only to future stars like Annette Funicello, but to the disabled world. So I will. He helped everyone who came to him, even my disabled girlfriends from school. And my mother thought so much of him, she recommended Al to their parents.

Al Gilbert, dance teacher, poet, author, and humanitarian, proposed coming to my elementary school for handicapped kids and giving of himself and his talents unreservedly. He was enthusiastic about teaching other disabled children and giving his time to our community. However, even though the master in taps, he did not have a college teaching degree, so 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 every life he touched. Including mine!

I remember that day we met. I was a 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 left ankle that I probably would never have developed if it weren’t for him.

No therapist ever gave to me like he gave himself. Because of his teachings and his techniques, my once twisted torso straightened out, along with my left leg. Not only did my dragging foot and floppy out–to–the–side gate correct itself, but at age eleven, I was able to hang my full length brace in my closet, never to wear it again, thanks to his unwavering dedication and devotion, week after week, year after year, recital after recital, teaching me lessons with and without my brace, dramatically changing me and my physical being.

Through all those years, he gently but firmly reminded me to bend my knees while doing shuffles, shuffle hops, or shuffle ball changes. I recall him telling me to turn my knee out for better positioning, and I 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 weak legs, who got strong through dance—only to become a ballerina. One time he went away, and when he returned, he brought me cymbals to improve my coordination and strengthen my left hand. In his unwavering, unique, and loving approach toward me, he tried every way possible to motivate and encourage.

After my other therapies and lessons were done for the day, every chance I had, I practiced his teachings. Every chance while at home, I practiced after all my other therapy lessons were done. So, with discipline, willingness, and an open mind, I put my record player on, to hear Al’s soothing voice instructing me as he always did.

I also remember him making my lessons fun, calling my mother up to have her bring me into his studio for extra lessons with no extra charge. He used to say to my mama… “…Karen’s smile was payment in full…that was all I needed.”

He even signed me up for piano lessons, at his expense, and he made these fun too. With his playful side, he checked up on me and the piano teacher every chance he got. Never once did he let on that the piano lessons were to strengthen my left hand.

I remember the closeness we had, and how our friendship developed over the decades. I trusted Al. I respected him and his word, and I talked to him as if he were my daddy after I lost my own to cancer. Al became a temperate figure I looked up to for strength and endurance. Al became the rock and pillar in my mind’s eye to endure all. He gave me a quiet love, acceptance, and devotion not only for 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 mankind 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, and as with all his students before and after me, Al endowed me with his skill and talent.

Follow Us

A Voice of Hope - Speaking to and for People with Disabilities