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