A little girl with severe spastic cerebral palsy and mental retardation lets us know what she thinks of society's reaction towards her and others like her. (Jodie, at the age of 12, is both physically and mentally handicapped, and she is mainly nonverbal. Her mother is acting as her voice. If Jodie could talk more, this is probably what she would want to say.)
I don't like it when people stare at me.
I mean, they see me in my wheelchair, and right away, they turn away like I have some awful disease or disfigurement; they act uncomfortable around me, and it really hurts me. I may not be able to talk all that much, but I know when people are NOT being nice to me, and it makes me sad when people ignore me or won't take the time to say hi to me.
I can't help the way I am: I was BORN this way. I was born brain-damaged, and nothing can be done to stop it or make it go away. I wish at times it WOULD go away (what I wouldn't give to be able to walk, or talk more than I am able; I would have a LOT to say!), but unfortunately, I will ALWAYS be in a wheelchair, and I will NEVER be able to talk as much as I would like, and my being this way is something I am just going to have to put up with...and learn to LIVE with.
My problem's name is cerebral palsy, and unfortunately, I have the severe form. It affects my entire body, and my muscles are unnaturally stiff; and when I try to move, no matter HOW little, the messages between my brain and my msucles get all mixed up, and my movements are jerky and spastic. I have what is known as spastic quadriplegic cerebral palsy, and all that means is that my entire body is affected. I also was born mentally handicapped, and because of it, I don't learn as fast as most people. I am not expected to learn much, but I AM a LOT smarter than what people really think. I know when they are being nice to me or not, and I know when I am happy or sad, sick or well, or if I have to go to potty or not. I also know that my family loves me for the way I am, and I know how to love them back. I am not THAT stupid; it's not like I don't know ANYTHING! I am a PERSON, NOT a rock!
No, having a problem like mine is NOT easy: I am dependent on my family for my basic needs (my feeding--I am fed by a tube in my belly--, my bathroom--I wear diapers; I am NOT toilet-trained--, or my getting dressed, in addition to being carried from place to place), but I still think I have a very good life. I have a family who loves me, and they DON'T mind caring for me. They are happy to be with me, and I am happy to be with them, and they loved me enough to adopt me as their daughter and love me as though I had been BORN to them.
My family is very special, and I have been with them for nine years now, since I was just three years old. I came to my family from Korea, and I have been very happy here in America. I love America, and I love my family, too!
But back to what I was saying originally: I wish people would give me a chance. I hate it when they stare at me or make dumb comments each and every time we go someplace. That makes me feel bad, and people wouldn't think it was very funny if they were in MY shoes! How would THEY like it if they were unable to move right without jerking all over the place, sitting in a wheelchair day in and day out, not being able to do very many things for yourself, and depending on your family for your basic needs, like getting dressed, fed, or even having to have help in going to the bathroom? I bet THEY wouldn't like it! I don't like it at times, but it IS my life, and people are just going to have to get used to being around me or the fact that I am severely handicapped and will always BE so.
You may think my life is boring--having to be dressed, fed, diapered, or carried (or wheeled) from place to place, like a little baby--, but my life is actually quite good (once I can get past people's unkind remarks or stares directed at me, that is!). I have many friends at my school, and I love being around my family..or ANYONE, actually! I love people, and I love being around them; being around people makes me feel good because people are very interesting to look at, and I love all the different sizes, ages, colors, or shapes that people come in! I also love their smells, and I also love the way they dress! People have always been fascinating, and this is why I enjoy being around them!
I also get to do things with my family: I am NOT stuck at home most of the time. I get to go to school or go on vacations with them, too, just like any other person. Yes, I may be in a wheelchair, and yes, I may be severely handicapped, but I am a PERSON first, and I deserve to do things with my family, too, just like my brothers or sisters who aren't as disabled as I am or even those who don't have ANY disabilities to speak of! I am a child, and I deserve to have fun or do things, too! I do NOT deserve to be "hidden away" just because I do not act or look like most people, and I deserve to be treated with the same respect and dignity as any other person would want to be treated!
Just give me a chance is all I ask. I may just surprise you with what I can do! Look at the fact that I am talking now and making my needs and wants known! Who'd ever think that I, of all people, would be able to do THAT? Doctors didn't think I would, but now, here I am, 12 years old, and am FINALLY talking, after so many years of not being able to! I guess I got the last laugh on them now, didn't I?? LOL
Who knows what next year may bring? Hey, I may even surprise you by learning to WALK! :D
Birth defects affect many of us in different ways--some handicaps are more obvious than others. Some assume since I am deaf that I'm not able to speak--but wait till they hear my voice, they jump sky-high :)!
The message--never sell anyone short--pertains to everyone.
Well penned my friend :)
:)Sandy
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