I don't know if you remember my rant awhile back about the doors at my
college, well I got hurt going to my Japenese class, at the Forest Park Campus. They
don't have automatic doors on the building my class is in. I was trying to
get through a regular door, in my wheelchair, and my left foot caught on the
door frame. My chair went forward and my leg twisted behind me. I tore the
ligaments in my knee and have severe bone bruising. At first they were looking at
casting the leg for 3 weeks and then possible surgery. The whole thing is a
nightmare. What makes it worse is it all would have been totally preventible if
the college followed the accessibility laws.
I've basically been sleeping and on pain killers....they make you really
loopy. My doctor wanted to try bracing my knee for 6 weeks before making any
furthur decisions regarding surgery. Unfortunately we haven't been able to find the
proper brace and my knee has gotten worse and worse. We finally got a
referral to a bracing specialist and are trying to work something out. asked him to
cast my knee because I knew finding a proper knee brace would be a nightmare.
Today we finally got a brace and it slides down off my knee after wearing it
for 5 minutes. It's completely ridiculous. It's been 4 weeks since I injured it
and we haven't been able to keep it in the proper position to allow it to
heal. The knee is getting weaker and I can barely stand. This is a real problem
because my house isn't at all accessible and no one can lift me to keep me off
the knee.
I had a meeting with the Access office 2 weeks ago to discuss how I could
complete this semester. I was taking 16 credit hours. To say they were less then
helpful is an understatement. I told them that I was concerned about being
able to be on campus without the ability to get in and out of my chair, seeing as
in all but one class I am forced to walk in and get my seat etc.. They
responded that they could move my classrooms, but they could not help me find
someone to get me to and from my classes, help with lunch, or even make sure that I
was safe in the bathroom. They suggested that I ask my home health attendent
to come to class with me.... but by law my home attendent is only allowed to
work with me in the home. I asked if my mom could attend some classes with me..
or even just make sure I got to classes safely and was told that it is
againist school policy to allow parents in classes. I then asked if I could transfer
my english, theatre, and computer classes to online courses and was told I'd
have to re-enroll and pay again in order to do that. I'm on scholarship and
have no money to do that.
By the time I finished exhausting all my options and emailing all over campus
to no avail I had already missed weeks of school. We figured the best thing
for me to do was medically withdraw and hopefully pick up classes again in the
summer.
This whole thing has made me sick and I am really into a depression. Not
being in school leaves me home alone all day with no ability to get out. We've
already consulted with a lawyer and plan to take legal action, but all of this
fighting gets so old. It took me forever to finish high school because my IEP
accomadations were never met completely. People always assume that because I
have an above average IQ my physical needs are irrelevent.
To make matters worse our van died yesterday. It is 13 yrs old. We can't
afford to put anymore money into it. Our credit is maxed from paying for HBOT
sessions, and masssage sessions, accupuncture, all those alternative therapies
that reall work but are never covered by insurance. It's such a sick cycle.
Somehow making only $658.00 a month on social security and being in school full
time I'm supposed to come up with the money for all my therapies plus another
$500 a month to pay off a car loan on a $30,000 wheelchair van that I can't get
to school or therapy without. As if that's not bad enough, my mom lost her job
because she couldn't garuntee she'd be able to get to work this week without a
van!
It's one thing after another and what really sucks is it's all related to my
cerebral palsy. You know I always try to remember that I am Christina Jo not
my cerebral Palsy, but when all this stuff is holding you back just because of
your disability, not because you were stupid and blew all your money at a
casino, or took a trip to hawaii, or got kicked out of school for drinking etc.
When all of this is happening because your body betrays you and you have zero
control. What are you supposed to do with that? It's just all so disgusting.
I know cars break, but we wouldn't need a 10 times overpriced wheelchair van
if I didn't have CP. We could get away with a nice small car. Our credit
certainly wouldn't be maxed all over the place. I could get a job without worrying
that I'd lose my medicaid. Hell I'd have the energy to go to school and work.
I mean lets face it. Most of us are in horrible financial shape because of
medical bills, equipment, therapies... it's not like we're taking a group trip to
the bahamas every month! It just gets to me. I'm the reason we worry about
the cut off date on the electricity, if we have enough money for food, why my
mom sometimes works 3 jobs.....it's just wrong.
The worst part is...I'm out there trying to succeed despite it all and I
can't even trust people to follow the laws, do their jobs, jobs they have because
I'm disabled. Let's face it Regional caseworks, UCP, alll special needs
related services. All those jobs, for "normal" people are created to help the
disabled... and yet the disability unemployment rate is up over %85 the college drop
out rate for the disabled is over %90 and most adults with disabilities and
parents of disabled children are given little to no real help or even told
about programs they may qualify for. It's beauracratic red tape.. and I'm stuck in
it because of a dsability a body that's beyond my control. This wasn't some
mistake I made.. or even a choice.. and well it is just really really getting
to me. Sometimes I think we're like the civil rights movement in the 60's..
it's a whole other fight for life for the disabled now.
I'm sorry this turned out really long. If you read this far thanks. I know it
isn't the most enlightening thing, but sometimes reality hits hard.
CHRISTINA JO (22 yrs old Spastic Diaplegia C.P.)
Capable Corners : www.capablecorners.com
The Hope Ring : www.geocities.com/~cpheart/webring.htm
"People see me, I'm a challenge to your balance."
" Happily ever after fails and we've been posioned by these fairy tales"
|
