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My
Cerebral Palsy by Virginia
My name
is Virginia and I have Cerebral Palsy. I had another
story in mind to submit but it’s more about living with CP. I can walk and I walk
with a walking stick when I’m out because if I don’t use a walking stick I have
to hold onto someone for support. My fine and gross motor are affected as well as my
speech. I have bladder problems as well. I don’t know where to start so I guess I’ll
start with my schooling. This article is mainly about my experiences growing up and living
with CP.
When
I started school most kids with disabilities were put in segregated classrooms because
they weren’t allowed or able to be in the same class with the regular kids. There
were 8 to 10 kids in my class. Most of the kids in my class were mentally retarded or
learning disabled. Some of the learning disabled kids were allowed to be mainstreamed.
This means they were allowed to be in a regular classroom part of the day. The other part
of the day they were in a special class. They joined my class for certain subjects such as
math, science and gym class to name a few then they went back to their regular class. I
wished I could have been mainstreamed too.
While I was in regular school I
took part in an early intervention program where I had occupational therapy, physical
therapy, speech therapy and nutrition. I felt my teacher treated me different from the
other kids in my class. I was not allowed to go to lunch until all my morning work was
completed. I was also very easily distracted and used to look around the room and daydream
often. I was not allowed to go to assembly until all my work was completed. Once when I
forgot my permission slip to go to the park I was not allowed to call my Mom and have her
bring it to school so I could go. I cried all day. I was only 7 and I was too young to
understand why I couldn’t go to the park and my classmates could.
One time my teacher put me in the bathroom to separate me from
the rest of the class because she thought I was looking out the windows to much I guess.
We had a bathroom in the back of the classroom and that’s where she put my desk and
chair. I gave her such a hard time. Also, when I touched my private area she took a ruler
and slapped my hand with it. I never saw her treat the other students the way she treated
me. I know she thought I was a bad kid. I thought she treated me unfair. I had to go to a
hospital to receive my therapy because there was no therapy in schools then for kids and
the therapists didn’t make house calls then like they do now.
When I was 8 I went to a special school because the
regular schools really didn’t have anything for me. Special Education was new at the
time so they didn’t have all the special programs for kids they have today. I learned
more when I was in the special school than regular school and I got to have my therapy in
school. I had some vocational training but I didn’t feel it was enough. They couldn’t
seem to find the right job for me as far as vocational training so I went to a vocational
school for young adults with disabilities. I was lucky enough to be allowed to go to a
special school and stay in school until I was 22.
I
can’t work because of my disability so I decided to get SSI & Medicaid. However,
I was turned down several times. I had to take Social Security to court and a judge said
that I qualify. He said I’m disabled enough to get it. Then I was offered vocational
rehabilitation so I accepted it. In 1997 I got married and I lost my SSI because my
husband was making too much for me to qualify for it. I got married because I wanted to
try to live as normal of a life as possible. It’s a shame people who are disabled and
on SSI who get married are punished by losing their benefits. First you have to fight for
what you deserve then if you get married they take it away even though you’re still
disabled.
When
I was little, I didn’t know anyone else with CP. So I felt like I was the only one
with this disability. I also thought I was much worse off than other kids with
disabilities because I didn’t know or see anyone else who was worse off than me. It
wasn’t until I was involved in Special Olympics when I saw kids who were a lot worse
off than me. Now I know there are plenty of people out there with CP who are far worse
than me.
Living with a physical disability is hard. I’m
often on line doing research on aging with Cerebral Palsy. Unfortunately, there is very
little information on aging with CP. As I write this article I wonder how long I will live
and how will CP affect me as I get older. I’ve been on line since 1995 or 1996 and I’ve
found the Internet a great place to get information about almost anything you can think
of.
I’m not one of those people
who have a disability and claim they are normal just because they can do most of the same
things normal people can do. The way I see it, I’m still disabled even though I can
do a lot of the same things normal people can do. It just takes me longer to do them and
sometimes I might need help doing something. I don’t know why people would claim they
don’t have a disability when they do have a disability. I don’t think people who
have a disability should deny they are disabled.
When I was a kid, a lot of kids
made fun of me because of my disability. They made fun of the way I walk and how I talk.
Some kids used to laugh at me when I fell down. Kids can be very cruel. They made me cry a
lot so I was an easy target for them to hurt. Kids can be very hurtful. I’m sure a
lot of you may have experienced this as well.
A lot has changed for disabled kids than when I was a kid.
However, I feel the disabled are still discriminated against and people with CP are still
thought of as retarded. In fact, most people with CP have normal intelligence. Only a few
are affected mentally. I wish society would except me for who I am and not label me
something I’m not. I like the Internet because you can be completely anonymous. You
don’t have to worry about people looking at you funny or anything like that. You don’t
even have to give out your real name if you don’t want to.
Besides the CP, I
also have emotional problems. I get upset easily and I get easily frustrated when I have
trouble doing something. One thing that frustrates me is computers because unlike a lot of
other people I don’t know much about them except for the basic stuff. I know there
are probably plenty of other people who don’t know enough about computers like me. At
least I know the basics about them.
My emotional problems are hard
for me to control at times. When I was growing up, I tried to hide my emotional side from
a lot of people I knew because I didn’t want them to think I was crazy or different
from them in any way. I wanted them to think I was normal like them so I didn’t show
my bad side except when I was only around my family. Besides, I wanted people to like me
and they did. They thought I was a perfect little angel because that’s the side I
showed them. They never knew I have a temper at all. Once my emotional problems caused me
to lose an on the job training job that I had.
As for looking for a job that’s
a whole different story. After I graduated from school I tried for years to get a job. I
worked with several job vendors to try to get a job. I would have job assessments but
afterwards I never heard from the job vendor again. A job assessment is when you go to a
job for about 5 hours for one day to try out a job so the vendor can see what you can do
and whether or not you like the job. I got so sick and tired of going to job assessments.
Needless to say they couldn’t even find me a job. However, I
did go on a couple of job interviews but they didn’t have the right type of job for
me. I was told there was funding to find me a job then I didn’t hear back from the
job vendors. I was even offered a computer course to improve my computer skills but I
still didn’t get a job. I gave up trying to find a job because too many people
discriminate against me.
People think because I’m
affected physically, that I’m affected mentally as well. However, my mentality is not
affected. I’m not blind either. I don’t think it’s right that people who
are mentally retarded are able to get a job but people who are physically disabled are
discriminated against. I feel this is because there are more programs for retarded people
to help them find and keep a job but there is basically nothing for physically disabled
people.
I
know this article is different from other articles here. It’s hard for me to think
back to my early childhood and teenage years and remember everything because that was so
long ago. Now I have bladder problems and I’m trying to see if I can get some kind of
government assistance. I feel I should be able to get some kind of government assistance
because I’m disabled and I don’t think being married should deny me that. I hope this article gets published on this web
site.
Unfortunately, the laws that are
in place for someone to qualify for SSI, Medicaid and other forms of federal assistance
are old and out dated. I know you’re going to say Social Security has to abide by the
law. However, I think the law is stupid and needs to be changed. The current law punishes
those of us who are disabled and can’t work because of our disability when we’re
on government assistance and get married because we want to live as normal of a life as
possible and be as normal as possible. The next step we must take since the federal
government won’t take care of those of us who want to be as normal as possible is to
break down barriers when it comes to employment. I this people with disabilities need to
get involved in their communities and in politics. I have always supported equality for
disabled people whether you were born with a disability or had an accident which resulted
in a disability.
First I support equal education
for all kids with disabilities. A child with a disability shouldn’t be left behind
because of his or her disability. Unfortunately, there are a lot of kids who are ignored
in school because they are disabled. Physically disabled kids are most likely left behind
in school because they have to spend so much time in therapy so they can walk and talk.
These kids often spend little time in the classroom. I don’t know if this has changed
much over the years since I was little but this is the case for my generation and older.
When I was little I felt I wasn’t getting an equal education because of my
disability. I think kids with disabilities should have the chance to go to collage or a
trade school. You can get a better job if you learn a trade rather than a skill anyway.
I support affordable &
accessible housing for disabled people. I support equal opportunity for disabled people.
We in the disabled community want to be treated as equals. We are not all retarded. The
able bodied community thinks if someone is different in any way they are mentally retarded
and they are afraid to hire them because of this stereotype about the physically disabled.
Just because someone has trouble walking or talking doesn’t make them retarded. Just
because someone walks funny doesn’t make them retarded. Just because someone is deaf
or blind doesn’t make them retarded. Mental retardation has nothing to do with being
physically disabled. I know some retarded people and they are really sweet. However, they
are affected mentally not physically. Retarded people can learn things. It just takes them
longer then you or I to learn things. A lot of retarded people have overcome there
disability and many are able to work. Unfortunately, only a few are given the chance to
find meaningful jobs. This needs to change as well.
During my years on line, I have
found a lot of people look at being disabled as a blessing. How can you be blessed with a
disability? I wish my disability was hidden because then people wouldn’t know I have
a disability and they wouldn’t stare at me or look at me different. I don’t
think being disabled as a blessing or a curse. I don’t think it’s a gift from
God or a higher power, whatever you believe in. I hope you decide to put my article up
even though it’s different from other articles here.
I hope you can understand what it’s
like to have a disability. I don’t mean to offend anyone reading this. I just want
people to know what it’s like to be disabled. I hope you have enjoyed reading this
article because I know I enjoyed writing it. I almost forgot to add something pre-teen
girls do get their period and women with disabilities can have kids. Pre-teen girls with
disabilities do go through puberty and they do get breasts. I just wanted to let you know
because when I was a kid some kids used to ask me if I got my period and if I had breasts.
I would just ignore them because I thought their questions weren’t appropriate.
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