Guest Post by Chantelle

Understanding with Cerebral Palsy

and other related disabilities

My name is Chantelle and I am Karen’s best friend. She has asked me to post this blog as she has a lot on her plate already. Today I want to bring up the topic of other people understanding Cerebral Palsy and other related disabilities. Like Karen I also have C.P. however I do have a speech delay.

People get the misconception when they see a person in a wheelchair or a walker. They see the person as being disabled and they look at what they can’t do. What about not focusing on what they are able to do and not what they can’t do. Personally in my vocabulary the word “can’t” or “can not” is not in it. Okay for the sake of arguing we might not be able to do it as everyone else but, we always find a different way of doing it. For example we may not be able to do up our button on our jeans because of the lack of our fine motor skills, but we can use a button hook and still be able to lead independent lives. Focus on the abilities. If you see people with disabilities struggling in a store or in your community don’t assume that they need help ask them. Even if they are non-verbal please be patient and look for a sign of a yes or no.

In my opinion there is no such thing as “normal”. Everyone is disabled, weather you have a learning disability or you just where glasses, we all have a disability. Having said that the next time you run into a person with a disability remember we are just like you and we can be as successful as the “average” person. We just work a little harder and we take a different path to get there.

I was honored to write this for Karen. She is an inspiration to me and being eighteen I look up to her a lot!!!

And she’s back from the dead…

Not quite… I know its been ages since I posted here. I have had a lot going on in my life and a ton of health issues that are still nowhere near resolved. The biggest news that I have is that I am finally realizing a life long dream. I was accepted into law school through Charles Darwin university and started classes in November 2007.

This doesn’t change my plans for this blog and i hope to write more frequently if there is still anyone interested in reading…. Please let me know if you are reading this…

Gift Train

Meme time again!

Emma over at Wheelchair Princess posted the following about this meme and well, i’m in.  Here’s what she wrote:

Like a meme, only it can invade your snail mailbox:

Via Grace at What If No One’s Watching? — By the end of January, 2008, I will send a tangible, physical gift to each of the first five people to comment here, so long as each of those five people are willing to make the same offer in their own LJ or blog.

I’ve taken the liberty of giving myself a month’s more time to accomplish this. Also note that “tangible and physical” possibly means “whimsical and odd.”
Happy holidays.

So the first five people who comment here will get a gift sent to them.  And if my readers will please note that tangible and physical possibly means whimsical and odd like Kay wrote but more than likely also means some for of craft.

So, get commenting, get posting to your own blog and if you comment e-mail me your address at milkbottle05@yahoo.com.au

Milestones are all relative

In thinking about milestones I am struck by the thought that what one person considers to be a milestone might not be considered as a milestone by another person and does anybody actually care if we don’t reach the “right” milestone at the “correct” age and in the “proper” way. Don’t get me wrong, I realise that parents probably care if their babies are reaching these milestones or not but I don’t think it matters that it took me until age 19 to be able to take myself to the toilet, or that I can only do it at home and not out in public, what matters is I can do it.

I also see this blog and more importantly, this post, as a milestone because it means I am finally comfortable enough as a person with a disability to not only acknowledge the fact I am disabled but to share my thoughts and feelings about it.  Most people probably don’t get why this is such a big deal, but it is a big deal to me. I guess that’s my point, milestones are all relative to who the person is and where that person is in their life regardless of whether the person is disabled or not.

Questions, questions everywhere but not many answers

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?

Crap on wheels

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?

I’m back!

Hi all,

I know it has been awhile since I wrote here and for that I apologise. As you can probably see I have changed the look of the page a bit and also added a few pages. I have added a 100 in 1001 page, a page for general information about what CP is and a page for links. If you have any good CP links or have CP and a webpage and would like your page to be added, please let me know and I’ll add it.

Over the last few weeks I have had a few new experiences that have given me more confidence in my own abilities and probably opened other people’s eyes to some of the difficulties that people who use wheelchairs face.  I went on two trips to Melbourne. The first was a TAFE trip. My class went in a mini bus to the state library & also ACMI. This was a first for me in many ways. It was my first time visiting the city. It was my first time in a mini bus. But more importantly for me it was the first time since I was very young that I was included in such a trip as a part of the group.  In the past I have been forced to travel in other ways or miss out on trips entirely. There was a bit of an access issue with the toilet at ACMI but through a feedback form I think its all resolved as of today.

The second trip was also to Melbourne a few days later. This time I went to the v8 supercars. This was an even more interesting experience even though I had been before.  The crowd as usual were ignorant of the fact that I can’t stand up to see over the top of them when they stand in front of me.  One guy actually suggested I do so when I asked him to move. It never ceases to amaze me how clueless some people are. Needless to say all he got in return for this suggestion was a piece of my mind.

It was an interesting few days anyway. Sometimes I feel like getting a t shirt made that says “chair is not an optional accessory” or something similar.

I will write again soon. Please leave a comment to let me know you were here reading this.

Karen

Hi and welcome to my page

G’day everyone,

Well, this is my first post in my exciting new project. The idea behind this blog is that I write about my experiences as a young woman with Cerebral Palsy (CP) and anything else disability related and hopefully it will become a resource for people with CP, their parents, carers, friends families, teachers and basically anyone out there who is interested. I would also like to use it to showcase my writing and as a way of expressing my feelings.

I was asked by my counsellor at the local community centre to write about CP and any related disability issues from my point of view so that it could help raise disability awareness in my community. The only problem she had was that she wasn’t sure how to get my writings out to the community. I suggested a blog because I hope that people who read it will add their own thoughts and experiences in the comments section and this will become an even bigger/better resource.

I’m not sure what I’ll write about first, or how often I’ll write on here. I thought I’d write a little about me and you can learn more and get my medical updates at www.caringbridge.org/visit/karenmelissa . if anyone has any comments or questions or anything to add about what I write up here at any time please leave a comment in the comments section of any post.

My name is Karen and I’m 23 years old and I live in Australia with my parents and dog whose name is Flea and some goldfish. I attend the local TAFE, and university. I love to read and write, watch movies, listen to music and I’m a motor sports fanatic. My favourite colour is purple.

I have a type of cp called Spastic Diplegia . it affects my legs and also my right arm. I am not affected by the CP intellectually in anyway although there seems to be an automatic assumption by the community that I am- that’s a post for another day. I use a wheelchair to get around all the time and have both an electric and a manual chair.

If anyone has any questions or anything you’d like to ask me please leave a comment. I will write again really soon.

Karen