It Never Stops

In all the 60 years I have been alive, we still do not know how to treat the disabled or challenged person with dignity and respect.  I just had a birthday seven days ago, and it has really gotten my wheels spinning.  In all these years, with all the advances in technology, human attitudes have not advances.  We remain aloof, callous, cold, and even more judgmental of each other than ever before.   Every other grouping of disabilities is far better understood than people with Cerebral Palsy.

We are trapped in a world of worthless, valueless, and second-rated ideas.   You would think by now, with all the human Civil Rights cases and laws on the books, things would be different. But they are not-  People in charge smile and use all the right words, in all the right company, although, for many, they retain dangerous ideas and concepts about what must be done to “help” us .  This idea that “we should” want meaningful employment, a person we could call our soul mate, a place that we could call our home, and the opportunity to recreate is for many of them terrifying.

To be amongst people, working, playing and living healthy, happy, meaningful lives does not exist!  People are down right threaten of those like myself who are self-directed.  They can’t stand me because I threaten their world and their ability to perform and exercise power in any way, shape or form.   They are taken-a-back by my determination.   So they begin to resent, bully, judge, and retaliate against us.  Why, tell me why does this have to be?  We are not doing or bringing harm to other people-  All we want to do is live our lives joyously and peacefully in the way we choose.

Their is absolutely no reason at all on earth, to take matters into ones hand to ruin our lives. What reason do people have to stifle our needs, our wants, our desires, and our aspirations’.  The only reason I can come up with after a life time of this kind of bullying and trauma is to uphold the image of our community as cute and helpless.  They can’t stand us having our own power.  They can’t stand seeing us succeed and be successful. And, they can’t stand that we are accomplishing and trying to accomplish anything without their help and guidance.

Just like all of you, I intend to continue to not only accomplish the accomplishable, but I intend to continue to make this a kinder and gentle world by bringing this to the forefront.

The Distinguished Panel

On Monday, November 22nd, I was invited to be part of a respected body of people who talked For/With/ And About disabilities.  It was a well received event. Hosted by the IWOSC.org( Independent Writers Of Southern California.)   Where one of the first questions asked, of us was…  what made you decide to become a writers?  And when did you know?  Each of the four individuals in order asked, answered, including myself.   Each person responded.  And each, because their disability was/is  different, or, was writing about a disability or personal family member having one, each answered in accord.

Personally, to be ask to be on a panel such as this; so quickly, was quiet exciting-  it was quiet stimulating, and quiet awe inspiring!  The topic, shushed the audience in amazement.  As “we”  the panel, were not able to talk about why we inspire others.

I believe and accept that the inspiration is in the act of doing, conquering, and  achieving.  It is in the believing in oneself when others don’t!  But most important, it is in the use of the written word.  It is in the how we express ourselves, our visions,  our dreams , and, our insights as writers.

Caring in a World That Does Not Seem to Exist Anymore

“Healing should be a loving human interchange, not a business transaction.”  Dr. Hunter Patch Adams said in one of his interviews.  Why is that?  Why have we taken this stance?  And why have we become a society who doesn’t care anymore?   Have you ever thought about this, or if you have participated in this kind of destructive thinking, why is that so?  There have always been ruins and catastrophes throughout our centuries, but never to the extent and scale that we see it today.  

 We have become a society wrapped up in greed, materialism, and self-indulgence. We do not know how to give of our selves or be selfless.  We do not know the first thing about passing it forward, or helping those who need it.   We have lost the meaning of warmth and benevolence.  And, we have become cold, callous, and uncaring.   We have mutilated our dignity, and, we have lost our focus.    

What has happened?  Why have we forgotten this?  And, what is it in our innate nature that makes all the past 5 generations believe in what we do today?  Have we been born and inbreeded with an impulse to lie, hurt, or harm others; only to get ahead ourselves?

It has always bothered me how people like this come across and get ahead.  It has also always bothered me how these people come across with this syrupy, sweet, sincerity; yet are capable of gross sabotage preying on the weak and those under them.   They don’t think twice about anything.  They use their status, power, and leadership, to compete further only to get ahead them selves!   And, they take away any chance or possibility to make someone else’s life meaningful or memorable in a positive way.  These people have no reluctance, conscious, or mindfulness when it comes to anyone else but themselves.   It doesn’t seem to bother, hinder, or concern them that when someone less fortunate is put in harms way-  These people, within our past generations, have little to no consciousness in hurting; wounding, ill-using and treating others only to get ahead themselves first.  Despite everything, and withholding all from everyone else, they continue to live their lives in the manor which “THEY” see fit.   Without understanding the effect they have made to society.

So Gesundheit and Whispers of Hope have worked throughout the past forty years to change that.  They like the Dr. Kramer’s, and the Al Gilberts of this world have never forgotten the human aspect of the healing arts.  They have not forgotten how to touch other people’s lives with a sincere smile, a kind word, or giving from their heart with nothing asked in return.

“At Gesundheit,…they…see deep, intimate friendships between patient and doctor.”  Why then, can’t we be mindful enough to do that?  Why can’t we begin to break down all these dishonest, harmful barriers in this generation that have such a deep human effect on ours lives? Why can’t we begin to heal our planet with kind and genuine words?  Why can’t we be honest  and admit that we have made a gross wrong step in taking humanity out of the whole person and the holistic healing process.

Messenger is Freedom

When I was a little girl, there was not the assertive technology we have today.  My mother, father, sister and I used paper and pen to write letters, cards, messages, notes and communication.  We did not have the luxury that today’s generation takes for granted. It was very difficult to communicate across the world in a minute’s time.  Nor, could I pop on the computer and connect with my dearest friend’s instantaneously.

When I was seven and eight years old, I remember banging away at my parents old Underwood typewriter.  What a gas!  It was a thrill!  I would move our dining room chair over to the credenza, where it stood, take out a sheet of 8 by 11 typing paper, line it up perfectly with my right hand so I could insert it properly, and roll it to the beginning of the page.  Somehow, this old machine gave me a gift.  Who knew what was to come in decades because of this writing instrument.    Look at the freedom it inflicted inside of me and so many others?  Who knew that this typewriter would free many a minds?  Who knew that it would allow people to defy all odds?   But it did.  It captivated, mesmerized and fascinated so many of us.  That eventually it escalated to a whole different level.   And look at the freedom it has brought!

This Underwood enticed me.  It lured me.  And it called me to attention by sitting at the keyboard hypnotized by the though of what I wanted to say just like Rosalyn Russell, in The Front Page, and, William Holden, in Sunset Boulevard.

At that precise moment, I was spell bound; I was taken in by the moment.   I couldn’t do anything but let my thoughts pour out of me, filling my mind, my being, my fingers, and my veins, with a burning energy to write.    Word by word, notion by notion, they began to flow.  With each deep breath I would sit very still as the images and ideas came to mind; allowing them to simmer for a second.  Oozing and trickling down through my fingertips, like a fresh pot of percolated coffee.    While allowing my consciousness; to merge with my sub-consciousness as it revealed to me what I wanted to say.    The words were there!  The words flowed all the way down through the cover pads on the tips of my fingers; onto the keyboard like they were always there.  Miraculous!   I came up with something to say; speaking clearly in a voice expressing myself by pounding away at the keyboard.  And I do mean pounding at the keys.  This gal with a learning disability, who could not even write a clear constructed sentence, was typing.  What a moment!  Wow!  What a significant moment to have these words, form a sentence, and come together for me.

And, even though I wasn\\\’t an Emily Post, I was compelled, constrained, and,  duty-bound.  I was captivated to type on this wonderful, old, antique machine and write something sensational.  Something that would capture, engage, and catch people’s attention- something that would draw the reader in; something to stimulate their interest.

Thus, when I watched these old classic movies, they released a passion inside of me.  They released  a fervor, a  zeal, and an enthusiasm which sparked my imagination. Since then, times have changed.  Thankfully, now, in our day and age, I can send an email message around the world in just a few minutes time.  I can connect, click, and wa la, my party is their in a flash. I can also connect through Yahoo, AOL, ICQ, or Windows live, and have a freedom I never experienced as a child.  Instead of talking on the telephone, with a party-line, I can talk through typing. I can also sit back at my desk leisurely, talking through Skype with a video cam.  Who would have thought…  forty years ago?

It gives people with motor coordination issues a freedom I never had.  A freedom to have a meaning and purpose, where otherwise might not be.  A freedom to engage in conversation, and a freedom to make connection‘s with people their own age and contacts with those of same likes, dislikes, and interest in a moments time.

What my generation got through imagination and visual imagery, the past two generation have gotten in technology.  This freedom would not exit today if we didn’t allow ourselves to dream and experiment and to defy all odds, as well as to be a team in leading technology.   Messenger has taken us to a whole other level and has given many, thousands of people, otherwise confined to watching T.V. a voice and a new outreach in life.

Alterative Appearance’s

Most of my life, unlike “normal” people, I have had to mend myself back to health numerous times. It was not only when I was an infant but throughout.   Needless to say, it has been extremely difficult to convince medical authority I knew what I was talking about.  If the tests on the medical report didn’t say it, then what I was saying didn’t prove a single thing.  The only solution, even though the doctors won’t admit they are doping us up, all they want is to prescribe medication because they, themselves, didn’t know the answer, nor, did they know how to cure the symptoms and treat the whole person. 

They themselves, with all the medical training and book learned advice, are more at a loss then they care to admit.  If there isn’t a drug to push or a drug to subside the manifestations, then some kind of surgery, MRI, or Cat scan is forced, pressured, or urge upon us in an un-diplomatic way telling the patient … “how they CARE about the well being of your health.”  But how about treating the WHOLE person!

Recently, I have been able to restore my pancreas back to health; when a licensed, Family, General practitioner; was ready to shoot me up with diabetic medicine when I wasn’t even diabetic.  I knew imminently, what I needed to do for myself!   No, doctor, was going to belittle me, or dictate how I should live.  She was not going to induce drugs just for the sake of it.  Nor, was she going to destroy my own confidence in myself.  Neither was she going to deprecate my worth to build her own self up, by saying…”My way has not worked…”

This has been a long tradition throughout my entire life.  When I was younger, doctors wanted to carve up my disabled hand and good leg like a turkey.  If I allowed this, I would have two legs that were deformed and a hand that would be hanging by a string, useless, and worse than it is.  If I hadn’t cared about myself to the degree which I do, and spoke up for myself fighting traditional medicine, I would be far worse off and sicker today, than I actually am. 

Some how, some way; I have been blessed with a gift to know what is truly right for me, and my body.  I some how always distinctively know when something is or is not right.  Some how my body and being knows when something is not kosher.  That is when a wave of feelings, my six sense, and my intuitiveness self takes over.  I salute and stand up to attention with a perceived perception that makes me stop and think.   That has kept me from listening to un-wise doctors, and medical disasters. 

Whether disabled or not, doctors seem to over-step their boundaries.  They seem to think that because we are disabled physically, we don’t know a thing.  They seem to think that the “test” knows all.  And, they seem to think that it is their job to control our lives and ruin our bodies.    The medical profession, drunk on its own power, is unwilling to accept alterative medicine and healing not taught in a traditional setting, nor, are they willing to look at other attributes or classifications that bring comfort and true holistic healing to the person needing it.

And so, I am here to tell all of you; that this young woman has added forty years to her life. This woman’s gene pool was destined for hardening of the arteries, strokes, and diabetes.  This woman; since the age of twenty, suffered needlessly; unknowing her pancreas could not and would not digest foods properly.  Yet, yield and produced health and well-being.  And, this lady, stood steadfast for all these years till she found the answer.

Dusting with Independence

How many of you reading these articles of mine, have had difficulty picking up trash from a dust pan after cleaning your floor?  It’s easy, one would think.  Right?  Wrong!  Actually not!  Think about it.  For many years, decades to be exact, I have avoided all attempts using a dust pan; because the dirt that I swept up would only gather underneath, instead of where it really belonged.  Frustrating yes- So frustrating and aggravating that I would give up after 5 endeavors of trying to get this dirt where it was meant to go. 

And this is not like me, I’ll have you know.  Yet, this act of trying to accomplish this feat and undertaking   caused much annoyance and exasperation.  So, that I found new alternatives and choices for many years.  Thus, to be totally independent of anyone, I selected a vacuum in its place.  

However, now, I must change my routine because I am restoring and adding new hardwood floors in my house.  Beautiful, yes!  Although it will require; and demand me to alter my independent ways.    As the old way, definitely is turning out to be a hindrance.  Without a doubt, outmoded and outdated.  

Who, then, in their right mind is going to drag a vacuum across a newly shined and finished hardwood floor?  Not Me!!!   Because, I am not going to ruin them!  Hence, I am going to have to find a new adaptive way.  A way that will work for me-   and me alone!  A way which will allow me to clean my floors independently-   And, a way that will help prevent me from scratching them. 

 So, guess who went to Lowe’s?  I did.  And guess who bought a new dust pan with a handle and broom?  Um hum!  And guess what didn’t work?  You got it!  And,  why?   Because the rubber on the bottom of the dust pan; was tweaked.   Bent and lifting from the floor where it should be smooth and aligned.  So as maddening, irritating, and infuriating as it was, I had to deal with it.  I had to suck it up, gain my composure, and take the one I had from the garage, which we used for the garden, and use it for the use in the house.     What alternative did I have when the older one worked better than the new one I just bought?  So as clever as I am I  gave me my own freedom.

Making Health Food Shakes In the Rain

What do you do on a raining afternoon when it’s cold outside besides sitting in front of the fireplace, dappering at the computer,  talking to a close friend, listening to music, watching a good movies, giving oneself a facial, and playing a board games to occupy ones time. 

 I like to make health food shakes, loaded with bananas, apples, blueberries, strawberries, blackberries, and raspberries. In my opinion, that is a wonderful way to spend an afternoon like this.  It is yummy to the tummy, and delicious, too!  Loaded with vitamins, minerals, and nutrient and gives me a spring to my step.  And , a vigor to my bounce.  That is what I did for fun today!   I even got to lick my fingers off.  Um, um good!

This is an enormous treat for me.  Especially after many decades of being challenged with many food allergies, and not being able to eat much of anything that I liked.  So, to do something as simple, sweet, non-threatening, and health-giving;  it brings me a joy I can barely express.  As I sit here typing to you, I am very happy, content and relaxed.  How about you?

Incomprehensible Comprehension

In the last few months, as I have struggled with inner ear problems, and have been bed ridden and house bound, I have had a lot of time to think.  I have come to the conclusion that the greatest waste that our men, women, children encounter in our society is the lack of participation in our lives.  I am very passionate about these thoughts and feelings, because first hand, I have seen human beings turn their backs on others.  They are more interested in helping oneself get ahead than helping advance a cause of a particular group.   Every time I think about the unfairness of these inequities, and the time of day by day empowered experiences wasted, it hurts and drains my spirit in a way I almost cant explain.  Where is the kindness?  Where is the help we need to help ourselves?  And where is the understanding of what we are really trying to do?

Isn’t  it awful that we have to spend a lifetime proving ourselves over, and over, and over again because men and women in and out of power think that because we have a disability we aren’t capable of making the run!  It is a non-verbal, uphill battle, of delay and deal making which never gets us anywhere, fast.  Thus, we are pronounced to be…mentally deficit, with scattered thoughts, and unrealistic goals, and why?  I ask you why? Because, someone in power is threatened by what we want to do.   No where in my life, on the internet, or blogs has ever cared enough to talk about just this.   So I am.  I am the rebel with a cause!  We are meekly by-passed, ignored, and forgotten.  Nobody wants to deal with US.   The full and equal participation of our or any disabled community in public life is squandered by prejudices and limited ways of thinking which was designed to hold people back, lock them far away in a closet, and leave them to rot on a mere social security check for the rest of their lives.  They don’t want to deal with us.  They don’t want to make any sacrifices,  and they don’t want to spend their week-end trying to help us, help ourselves.  It is so much easier to spend time on the most sever and obvious cases which only want an ice cream cone now and then.  People would be shocked at the amount of bargaining, sacrifice, and cunning required to deal with the very organizations which claim their purpose is to help.    

When I am labeled “mentally retarded” on three separate occasions, when the speech impaired person have there talents ignored, and when a person who has spent eight years proving their abilities,  spent a hundred thousand dollars for a doctorate,  is told he belongs in a workshop- something is very wrong! 

We need to “…look in the mirror and change our ways.” We need to reach out and help-  we need to replace expert directed thinking with self created choices.  We need to overhaul the way people treat others.

Focusing on Forging Ahead

My dear readers.  I know it may seem as thought a lifetime has gone by since I have last written, but you’d be pleased to know that I haven’t fallen off the face of the earth.  As I type these words, I sit with an arm bandage on my right hand so that I can write these words to you.  I injured it by doing my daily routine and have been quietly sitting still while healing.  Yet, the thoughts of what I was going to write next, continued.   Having an injury did not hampered my ability to pick up my writing where I left off.  Now that I am  a bit better, and can use my fingers without unbearable pain, there is a great deal I wish to say. 

My thoughts and desires are not to bring you the ordinary and the mundane.  My strong wish is to bring you thought provoking articles to make you think twice about.  My entries may not be every week, but the depth and thought I put into each article I hope will touch something off inside of you.  I bring you these articles with a passion  and a commitment to enlighten the world you live in, and, the thoughts you may feel.  I bring you these article’s in the fashion I do; to stir your thoughts, and to challenge the ordinary within you.  My purpose is to arouse and awaken the sleeping part which holds you back from treating people like me, with little dignity and true respect.  This journey of mine will not cease!  I will continue to jar and pry open the many controversial thoughts which our society still denies, and tries to deem unworthy of listing to.  I  will carry the torch  until I see proof of our world treating us with the same dignity and respect the able population gets treated with.   My writing may be few and  far between, but, my words will speak volumes, and be worth listening to.  It will change your thinking beyond any whelm.

I’d like to share my perspective in a very safe, caring, healing kind of way.  I’d like to tell you all about my thoughts and feelings as a people with physical challenges.   I have kept my minds eye open towards finding the article and words that would reflect all of my thoughts and feelings and experiences.  I have been on a sabbatical recently, while working in many other areas of my life. 

Perhaps the most interesting of all, is the fact that I have been editing my memoir for the last 6 months, and, working with an agent and many other people to enlighten, open minds, and give true account of what Cerebral Palsy is all about.  Day in, and day out, I think of not only writing article’s that will mean something to others reading my blog, but also to bring a new perspective of looking and dealing with many given daily situations so to be treated as an equal person, in a world where people push our talents and desires off with a simple role of an eye, a condescending pat on the arm, and a comment that gives little credence to what we are truly capable of achieving, and what we do to earn an honest living and make our achievements possible. 

This is never more true than in my own efforts to teach not only adaptive aerobics, Pilates, and yoga, but in crossing over to our “normal” population. Time in again, in well over forty some odd years, I rapidly find that no one believes that I, a person with left side hemiplegic, Cerebral Palsy, could be efficient at teaching dance as I do.  I have proven this fact more times than I care to count.  However, this fact takes people out of their comfort zone.  This fact destroys fifty years of telethon brainwashing.  And, this fact, does not help people like you and me get ahead financially, mentally, or emotionally.

This fact, keeps us right where they want us.  They don’t have to say anything, or do anything, except continue to lie to our faces, with all the so called rules and laws properly in place.   Thankfully, not everyone feels this way.  Still, the comments and undercurrents continue.   We are told “Oh you teach…!” yet, they won’t hire me as their teacher or consultant.  They don’t give me a chance to do what it is that I am well rounded and experienced in doing. Thus, the insecurity comes in, because no one truly believes in my ability.  Therefore, I am ALWAYS trying to prove myself a trillion times over.  If only I was given the same chance-  If only people could look at me in the same way they look at there peers- If only they could see beyond their eyes-

Sometimes  an initial acceptance turns into nothing but pike dreams.  It is so much easier for people to talk about equality, than actuality practice it.  A comfortable phrase replaces action.  People wish us luck instead of doing anything.  People ask about our daily living skills instead of what’s in our hearts and minds. Also, they treat us as though we don’t know any better.  This has happened time and time again in my life.  And I have to keep forging forward to prove myself and focus ahead to do more.  

Thankfully, I have been able to hold true to my true self.  I alone neVER turned my back on myself.  I forged forward.  I put belittling aside.  Took hold of the reigns\’, and galloped triumphantly.   I’ve done the impossible.  I have moved forward in ways people in the “normal” world told me I’d NEvER be able to achieve or accomplish.  In the coming months ahead, I will be traveling not only to Utah, but I am planning a 15 day excursion to Canada and New England.  I will be traveling the seas and seeing the vistas of our country side.  And, if everything works out, I will be taking a trip of a life time with three dear, precious friends to Africa. 

With all of this, one would think I wouldn’t have to focus so hard on the simple things we call life!

Assumptions & Arrogance

After another year winds to a close, I have often been moved deeply. The years, months, days and hours past through my heart and mind like a stamp stuck on paper.

It takes me back to all those moments and times that people’s arrogance and assumptions held me back from what I was trying to do.

Because of my rebelish nature, I was not only able to survive but thrive. I was able to do a lot which people in power, thought was impossible. But it would be very naïve of me not to tell you of the extra effort I have had to spend because of what people in the twentieth century were taught to believe about my disability.

I can’t help but think about these moments going around and around in my head when I reflect about how much time has had to go by. Time that I could have been contributing to a caring world- Time that could have healed all wounds by a simple gesture of acceptance- Time that could have carved out recognition for not just me, but for our whole community.

Instead, I have had to run up over and over again against the electric chair of official stupidity. Of official neglect- And, of voluntarily lowing of self!

I have had to beg time and again, as I have had to explain the obvious to every expert imaginable shape and size.

What I knew was never enough. It had to be done on their terms.

I was labeled and mislabel mentally retarded all because of an IQ test, and people in power who only pretended to know what they were doing.

Fifty-eight years have gone by. Fifty-eight years of sheer hell on earth. Fifty-eight years which I have smiled, grinned, and bared it, and made bearable. For what?

But who will give me my youth back? Who will give me the degree I was so worthy of? And, who will give me the job or recognition I have busted my buns for? Whom, I ask? Whom?

Why do I have to be tide to a stake for someone to gloat over? Why do I have to suffer for someone else’s arrogance? Why did I have to waste my whole life away?

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