In the mist of being a disabled person, and having Cerebral Palsy, our words seem to always be misunderstood. The intensity of which we live, speak, and pursue our goals is shocking to the rest of the world. They can’t handle it! It’s as though our words and thoughts have no meaning or validity. They misinterpret our strong efforts as an obsession. It’s very hard to grasp why everything is so important to us. But, when 20, 30, or 60 years go by and we have nothing to show for it then things become intense. We see our life before us, and realize that all these people, places, and things were obstacles. That our thoughts and dreams were only unrealistic hopes and plans for the future. And that our word had no meaning at all to others!
The Unfading Impact
What are the long term impacts and effects for people with Cerebral Palsy and the way we are looked down upon? It’s been my experience, that a great deal of energy and effort has been spent in categorizing particular levels of intelligence and ability. Why is it that we as people with C.P. have to keep proving ourselves? Why is it that as hard as we try to make something of our lives we see our opportunity’s slip away day by day through our finger tips? Why is it that the experts continue to label us and define what we are allowed to do? Is it because we have brain damage?
Collecting Information and our Ability
How many times have you as a special needs person sat in the team of therapist, counselors and doctor’s office waiting to be given an IQ test? Do you know what it measured? Did it really measure how intelligent you really are? How many times did you understand the question given by the administrator, but were unable to respond because of the way they verbally communicated it to you? Did you realize it after the fact? Was that the reason why you didn’t know what they were saying and didn’t respond correctly?
That is when we find out the truth about these tests! And that is when we personally find out what we are made of. That is when we know if we are going to fight an advance with great effort taking ricks to better ourselves, or sit back on our laurels and watch “The Wheel of Fortune.”
Words Without Meaning
How many times have you sat in a doctor’s, counselors, or therapist office, nodding your head politely because you didn’t understand what they said? Or maybe, it was because you knew exactly what they said, and what they really meant? “Helping language” for people with Special Needs is designed to convey different meanings. These meanings are used to limit our choices. The word ”realistic” sometimes is a code for settling for what is most convenient. The word “modification” doesn’t always mean getting the adjustments or adaptations you truly need, but rather being encouraged to try a fad of the moment. We all must try to recapture the words “real” meaning. What does it “really” mean to me? What do these words truly mean to get the assistance we need to make the most of our lives, and talents, and to thrive and flourish?
Favorable Chances vs. Missed Opportunities
When you think back on your life as a person with Cerebral Palsy and Special Needs, what comes to mind? At first, do you personally think of all the discrimination that has come your way? Do you think of all the misleading statement teachers, counselors, and doctors have written and documented about you? Do you think of all the lies, to all of the attempts to which you have made your life better and to move forward with? Can you go back in time and remember the last 15 or 20 years that have past? Can you remember missed opportunities (the tooters you never got to help you learn to read, the passing of grades not ever really knowing anything, the job you never got because your counselor would not approve your educational desires, the technical equipment you desperately needed but no one approved, the clearance and hands-up to live a healthy, “normal” life within our own limitations) how much of this is the result of all you have done?
Is Change Really Change for the Better?
The dangerous idea of change is a focus too much on words, and not on people’s well being. When experts believe they have a right to limit every part of how a “Special Needs Person” can make decisions and not think of them as a human being, then words dress up oppression. They hurt and they damage- They think not of who we are, but what our medical bodies have become to them in science. The humiliation comes when a person with Cerebral Palsy can’t stand up for themselves and say… “I am me! I am not my disability, nor should I be labeled in that way! Each person living with Cerebral Palsy has every right to grow up without being stigmatized or labeled from the medical society and losing that part of them that was lost due to change. The idea of making choices and changing is too often submerged in a misguided, misinformed attempt to “protect”.
Changing Terminology- Changing Ideas
Where did it all begin? Who knows? But the effects it has left on the special needs community goes much deeper than any of us know.
How many times have you been called developmentally delayed instead of just plain Cerebral Palsy? The first term can represent almost any part of your physical and mental living. But the second has far more direct characteristics and impact on one’s life. The idea is that a new way of interacting is now required. Still, this word is misused to imply limitation instead of alternate methods.
We, as a global society, have progressed beyond the “Cerebral Palsy” name to being linked with the “R” word, and now are known as “Global Developmental Delayed”. The phrasing still holds a dangerous idea and scars people for life!
Reaching For The Moon
While stretching out your arm to grasp the good things in life one desires and dreams of, have you as a person with Cerebral Palsy become aware of what actions you must take in your life to accomplish want you want to become? The more often we decide for ourselves, organize our though and idea, take steps towards those actions, and continue to believe in touching the moon; the less we will compromise and permitted negatives to happen to us. With each rising of the bar, we take a new stand to allow only the characteristics that will permit us to touch our goals. That is way it is so important for the special needs individual to surround themselves with positive light, positive people and positive situations who believe that anything is possible.
A Fabrication of Our Feelings
It seems as though Cerebral Palsy individuals and their parents have a figment of their imagination. Have you or your special needs child ever sat in on an IPP or IEP meeting where the hearts of The Child Study Team (IEP) and the minds of The Social Guidance Group (IPP) is conveniently contradicting what you and your child know they need.
What the special needs, child, REALLY needs is often labeled a fabrication of their minds. But is it really? Who knows there child best? And who knows themselves even better!
Ask yourself.
Is it so
Have you ever sat-in on your own meeting being disabled and having Cerebral Palsy, or sat beside your child trying to figure out how you can help them? These meetings often seem to be well intentioned, but in reality, are isolated from our daily truth. Every person involved is aware of what they need far more so than any of those experts who have made a career out of it.
With this comes many a thought and question to mind:
I do not believe the experts because you abused me and my child’s trust. You didn’t listen to me and my needs and disrespected my knowledge of myself and my own child. You didn’t value me or my judgment to even take it under consideration.
People are not always reasonable. They don’t always want to hear what we have to say. They get defensive, insulted, cover up truths and rule over us. But, that does not mean we have to sit back and take it.
What can you do to change this?