Monday, 22 October 2007


It's just before 6.45 and I have a friend coming round at 7. This is going to be my blog carnival entry for this week... IF I get it done in that time frame (yeah, had to get that If in there...)

An idea I've been thinking about a lot lately is how much my life would be improved if people thought about what they were saying before they said it.

If people would stop insisting that my life must be so hard. I met a new work colleague who asked if I can drive. I said no, but that it doesn't bother me because I live five minutes away from the train station and I have my powerchair. That was met with the insistance that it had to be really hard for me not to drive etc etc. I replied that given how close I am to the station the train is probably less hassle than driving and cheaper too. As a point of fact both my Dad and brother (who live a little bit further away from the station but not much) get the train to work as it's easier. But no, if I learnt to drive it would be easier for me. I have considered driving and been told it's not possible for me.

If people would stop asking ridiculous questions and start asking more intelligent and relevant ones. The new carer I had for the second time today took the time to say to me "I don't mean to be rude or ignorant but what does having CP mean, what are your symptoms?" That is a really good question. One that allows honest and open communication and understanding. And it also better enables her to support me as my abilities and limitations are more clear to her. Plus it's the sort of question I don't mind answering.

Someone else I am acquainted with asked me the first time we met how I managed the loo. And every so often now will ask me "hows your mobility? improving?" and once again I must explain that CP is incurable condition and it won't. This is always followed up by "maybe they will find a cure soon." My Mum actually thinks it's just her way of opening a conversation with me, seeing how I am. I'd much rather she asked "So... how've you been?"

The most annoying thing people do lately which would improve my life if it went away is tell me they know exactly how I feel/what I go through. I wrote a few weeks ago about someone I know being hit by a lorry and breaking several bones. She's out of hospital and has spent some time in a wheelchair. Currently she's walking with crutches, but more specialist than the regular ones. When I saw her she was going "Emma! I know exactly what you go through now." and insistent on telling me all of her used a wheelchair stories. Like how people who use a chair either for the first time or as a one off for a short period invaribly go "you wouldn't believe it..." Because yeah, a few weeks in a chair doesn't mean you understand a life in a chair. And as for not believing it? The only part of that I have trouble believing is that you really thought it would be any different to how it was. Welcome, to MY world.

So basically, the best way for my life to be improved would be for more awareness. And for less emphasis on the need for a cure. I don't need a cure and truly believe that CP will never be cured. I'm happy just the way I am. If people accepted that and I didn't have to deal with people who don't agree, don't accept that, and try to change my mind... I'd be a much happier cripple.

It's just 7.01 and the entry is done before my friend gets here, yay!


Jacqui's Mum in Aus said...

Thank you Emma, for once again telling it like it is. We all need to hear that and take note.
PS: Just love the range of faces we can use here, especially this one. :roll:

Astrid said...

Thanks Emma for posting this. Even though I have a different disability and different experience from yours, I agree with what you write.

» Blog Archive » 25th Disability Blog Carnival: IF said...

[...] our world might be like if there were some major, or even minor, changes to our way of being. Emma tried to imagine a world in which people actually stopped to think before speaking to her. Connie [...]

Jodi said...

I agree 100% :cool:

misscripchick said...

love the last paragraph! great to see you in the carnival. :mrgreen:

David McDonald said...

Wow! It only took you 16 minutes to type this post. It would take me 20 to type the first paragraph.

Educating people is so critical when it comes to disability... thanks!

Kara said...

:shock: yeah-I'm totally still in awe you can write so well so fast-I take forever! Thanks for joining in on the carnival fun-I'm really thankful I found your blog and i hope we keep in touch.

Rob at Kintropy said...

More awareness would be great, and it's good that you're open to people's questions. I love it when children ask questions. They are usually direct and honest. Unfortunately, it's the parents that usually pull them away. Getting to the kids' questions might improve awareness (hopefully, long term as these kids grow up).

Shiloh said...

Hi, tis me again. I'm commenting here because I had the "I know what it's like" statement given to me. I just smiled and went "Uh huh." But inside I thought to myself, *Yeah, right. You only had a glimpse. You can't possibly know what it's like every day of your life.*

This got me thinking. To be honest, though we have the same basic diagnosis and are in wheelchairs to varying degrees, and we have a better understanding and empathy for what each other goes through, we cannot totally understand what it's like for each other. Simply because our cases or degree of severity are different. What do you think?


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