Archive for April, 2008

Crap on wheels

April 26, 2008

I have two manual wheelchairs. One is a good chair, nice and comfortable but it needs major repair work. This repair work was going to cost almost as much as a new chair which meant there was no way I could afford it. So I brought myself a cheap chair to use until I could somehow manage to get the other one fixed. Only problem with the plan is my new chair is crap on wheels. I have only had it a few months and the brakes have broken twice and the frame is kind of wobbly. The whole chair creaks worse than my bones do (and my bones are really bad at times). So anyway, I need a new plan because this “new” wheelchair isn’t going to last much longer.

Yesterday I had a meeting to see how the government funding I receive can best be used. I asked about the wheelchair and was told they only fund stuff that I need specifically because of my CP. That is, something the average person doesn’t need. So a wheelchair is?


Questions everywhere

April 26, 2008

Recently I have spent time with young children, which isn’t something I do a lot of. With young children come questions and sometimes (actually most of the time) I am not sure how to answer their questions. Don’t get me wrong, I am happy that they ask the questions because it gives me the opportunity to teach them in the hope that they will grow up to be more tolerant of people with disabilities, but I am just not sure how to answer them.

Take the other day for example. I was with a friends 4 year old boy who I’ll call T. We had the following conversation.

T Why are you in that chair?

K Because I have cerebral palsy and that means I can’t walk like you can.

T why?

K because my legs don’t work properly

Now the next why? Was the first place I got stuck. How do you explain the mechanics of CP to a 4 year old even if they are a bright 4 year old? I was saved from answering when T’s mum came back but I would have liked to answer him. I just wasn’t sure how to?

Later that day T and I had another conversation about how I did stuff like sleep & eat and play games and I was fine answering it all until he asked how I went to the toilet. While the obvious answer was the same way as everybody else I knew that was not exactly what T meant. I took him into the bathroom and showed him how I transfer to and from the toilet. Then the questions started again? Why do I need rails? What happens if I fall down? What if my mummy and daddy aren’t home? While T seemed to be satisfied with the answers I gave him to those questions, I wasn’t. I felt I could have answered them better but I am not sure how.

How do other people answer children’s questions?


April 24, 2008

Today is ANZAC day here in Australia. It is the one day where we as a nation give thanks to those who have fought for and those who continue to fight for our freedom. The day has always had a special significance to me because several of my family members have been involved in various wars. The following is a poem I wrote  that I believe is a fitting tribe to the ANZACS.

When the war began they were at home working the lands,

But when the call came they were the first to raise their hands.

To fight for their country.

To stand tall,

To try & win the war.

Then one day,

As battle lines when drawn,

A gun rang out in the night

And a boy lost his life.

Many years later,

Many lives lost

We stand to remember,

How they fought for us

Fought for our freedom

Fought for our lives

Fought for our country

Fought so we can stand with pride

They gave their lives so we could live

Yet we act like its nothing to give

Fighting amongst friends

Like mateship means nothing

They mean nothing

Yet they are/were something to someone

A son, a father, a brother, a friend,

As I stand here today my pride knows no end

For lest we forget

Copyright Karen 2007

Jimmy Barnes

April 23, 2008

Me and Jimmy Barnes

This photo is of me and Jimmy Barnes, a legend not only of Australian rock n roll but a nice guy all round. I was lucky enough to meet him at the Day on the Green in my local area. When I was waiting out the back for Jimmy, a lady and her son (who was also in a chair) arrived and the venue and she demanded to know if I were cheeky enough to ask to meet Jimmy because I have CP like she was for her son. Yes, I asked my friend to try and arrange for me to meet Jimmy but not because I have CP and think that I deserved to do so because of it the way that the woman implied but because I have been a huge Jimmy fan since a very young age and this has only increased since I met him.

Hello and welcome to my new home on the web

April 22, 2008

My name is Karen and I’m 24 and live in Australia. I’m kind of new at the whole blogging thing so please bear with me as I figure this out. I have a caringbridge page and a carepage but lately I have been wanting to expand the things I write about so it is not just about my topsy turvy health (Although the health stuff will probably creep on here too). This page should allow me to do that.

First some of the basics about me and an explanation of the title. I have Cerebral Palsy, more specifically Spastic Deplegia. In my case both my legs and my right arm are effected. I use a wheelchair most of the time (hence the wheely part of the title). I love to write and tend to ramble on a bit and I am a motorsport fanatic- hence the racer part of the title.

I have a whole lot more to say but it is almost time for dinner and I want to send this site out to people so I’ll come back and write a new post after dinner.