Health Care: It Should Mean Something To You!

What does health care mean to me?  It means quality of life!  It means being able to go to the doctor and dentist when I need to. It means living in the home I do, and being able to have 22\7 personal assistant care. It means being able receive the tools such as my power chair,  communication device, eye glasses, strategically placed grab bars around the house,  shower chair, and manual wheelchair; all of these things make me as  independent as I am.

It was clear I had a disability from the traumatic birth I went through. The real question of just how disabled I was had to wait and be seen until I grew. However, the doctor told my parents that there was an institution called Fairview that I could go to. My parents didn’t give it a thought, and kept me at home.  All through my childhood my mom was able to get me the help I needed when I needed it. A contact of mom’s got me seen at Shriner’s hospital, Shriner’s sent me to Child Development and Rehabilitation Center, where I received my first physical, occupational, and speech therapies. I was born the year after the Higher Education Act of 1965, and that ensured that I received “financial assistance” for the special equipment I needed to get my education.

I believe that without my family’s support and the timely medical care I received early in my life: I wouldn’t be the person I am today!  I also know that if people are not personally disabled or are attached to a person whom who is living with a disability,  they may  not understand the importance of specialized health care for individuals who have disabilities. Be aware, be involved, be an advocate!

 

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Cerebral Palsy Is Not A Disease. . .

The other day one of my PAs referred to Cerebral Palsy(CP) as a disease while my sister was present. they received a mini lecture from her. I think it is worth repeating that speech since I hear people call my disability a disease more often than I like.

Cerebral Palsy is not a disease, it is a brain injury. Therefore, people cannot catch CP from me. I received my brain injury while I was being born. Children up to age Three can injure their brains through many accidents, and doctors will call the brain injury CP.   However, if someone older then three  injures their brain,  it is simply referred to as a brain injury.  l believe by age three, the brain is totally knitted together  so that it is apparent that a brain injury has occurred.  to cause the shift in the diagnoses.

Just to be super clear, in my life, nobody has come up to me and accused me of  giving them CP.   Did I just hear a collective sigh?

CP is not said to be hereditary.  However, I did have a cousin who had CP.  My moms brothers son.  In my cousins case, he was too big to be born the normal way, and C-sections were not invented yet.  so  like me his brain  injury happened while being born.  Nine years later, I was born on his birthday. isn’t that weird or what?

It is said that no two people with CP has the same exact disabilities and abilities.  Take my cousin and I for instance.  David was stiff like a board and totally locked in his body.  His only means of communication were his  eyes and some facial cues.  We all knew he was smart because he  laughed at the right times and grew serious when it was appropriate.  My aunt was a great role  model, she talked to David like he was totally normal, and everyone followed her lead. When I came along my family treated me just the same. I owe my aunt and cousin a multitude of thanks for paving the way for me!

Knowledge is power #2

Just because someone sits in a wheelchair does not mean they are also hard of hearing!

I was at the vets getting my cat updated on her vaccines. The veterinarian’s assistant came into the exam room to get Donka, and noticeably raised her voice when she talked to me.  Then my personal assistant asked her a question, and the veterinary assistant’s voice went back down to a normal octave. 

It was blatantly obvious, however until my personal assistant pointed it out to me, I was able to ignore it. I think I have grown accustomed to blowing off people’s flagrant misconceptions of me. It is not something that I consider worth getting myself all worked up about!  I figure if I am around people that have any misconceptions about me long enough, they will soon learn that I’m not hard of hearing, or simple minded.

The best advice that I can give you when you are not sure how to treat someone that’s obviously different from you, is to treat the person like you would want to be treated!  I believe that if everyone made treating people with respect an every day pratice, the world would be much more peaceful!  So, now that you know, act it out, and encourage other people to do the same!

Knowledge is Power #1

12/12/2008

 I have decided to periodically write about words or assumptions people have that really bug me.   I’m premiering, Jan’s vocabulary Tips of do’s and don’ts, and other such trivia. 

 

My first word is,  powerchair.  My powerchair gives me the freedom to get me outside and into the community, without being pushed in a manual wheelchair under someone else’s power. 

 

When I got my first powerchair, I immediately went to the places I had wanted to explore.  The barnyard sat high on my list, and was readily available   I was twelve, okay my world was the farm.  Within fifteen minutes I found myself stuck among the sawdust piles.  Oh, the joy of discovery! 

 

I do not own an electric chair, as they are solely found in prisons.  When someone refers to my powerchair as an electric wheelchair, I get this vivid mental snapshot of me strapped to you-know-what!   So, now that you know, pass the knowledge around! 

 

Here is my disclaimer!  Some people may actually like the term, “electric wheelchair”.  Just use your best judgment when picking out the words you are about to say. 

 

While I am at it, I would like to tell readers that what you are reading comes straight from my life experiences, my thoughts, and ever so randomly my beliefs will seep into my writing as well.  It is not my wish change anyone’s minds.  I just want people think about things differently for a few seconds, or maybe longer!  I gladly welcome your comments!  However, please don’t send comments that you wouldn’t want to receive yourself.    .   

Posted at 5:31 PM by useuraac@yahoo.com