You Know You’ve Got CP When…

Went to get my blood pressure checked (normal and I suspect I’ve now had “white coat hypertension” added to my records given how very very high it was when I saw a new to me GP last week) and have some blood taken. The results of the bloods came back a few days later as “normal” which isn’t the most reassuring thing ever as I’d rather be told what they actually are along with the fact they’re normal. But that’s something to take up with the GP at a later date rather than the receptionist giving me the results.

Anyway I was talking to the healthcare assistant about the fact that years ago I was told by one of the nurses there not to let anyone try and take blood from my arms because my veins were buried and they wouldn’t be able to do it but the last twice they’ve drawn it first time from my arm.  I find it weird that for so long no one could get it out my arms and most wouldn’t even try (and then the nurse told me that and I stopped letting them try unless they’d tried and failed in my hands) but now suddenly they can again.

She wondered if I’ve upped my fluids or lost any weight?  So I was explaining that I have been trying to eat healthier and more sensibly (and to be honest not doing great at that lately but I didn’t tell her that) but that it was proving so hard for me to be weighed and causing so many issues I’ve decided not to focus on that any more.  I used the example of the NHS specialist weightloss service I went to a while ago and how they couldn’t cope with someone of my level of disability and just accused me of letting my disability stop me.

Immediately the healthcare assistant went “no! you don’t let your disability stop you Emma, you’re not sitting on your bum all day…”

And I went “well I am sitting on my bum all day…” and laughed

She went on to say that she meant I don’t just hang around at home doing nothing but I’m out and about all the time at CAB and other things.

I knew that’s what she meant but the way she phrased it originally just tickled me. One of those accidental things that able bodied people say that I laugh about when I point out to them but point out nonetheless because it’s a bit of a silly thing to say to a wheelchair user.

And then as I made my home I thought about the fact that it’s such a “wheelchair user” thing to say – to most people what she said would have been just one of those things but to me it was worthy of comment and kinda funny.

you know you’ve got CP when…

>Spoonie comments

>My previous post got what I think is the biggest response I’ve had to my blog ever.  Or at least in a long time.  15 comments here on the blog and at least as many others commenting on twitter.  I knew posting something titled “Why I’m Going Off The Term Spoonie” would stir people up but I didn’t expect that.

I’ve been really loving reading the responses and seeing all the different points of view.  Especially the ones that made me think.  I think I probably need to write something else now I’ve had the chance to talk to so many others and also to discover that my views on the use of the term aren’t as unusual as I thought.  In a bunch of my friends I’m known as the one who says what everyone else was thinking but wouldn’t dare say.  It appears by posting this I may have done something very similar – almost exposed the “dirty little secret” of my little corner of the internet.  All in all I’ve seen one person say the post made them very sad and only one person had a particularly negative reaction to it.  Ironically said person admitted they hadn’t read the post on this blog and were just going by the discussion on twitter.  Unfortunately that got a little heated, but you know what? It’s no big deal, it’s only the internet.
I think the key points that have come up for me in this discussion (or at least until I get the time to write and think more) are:
The Spoon Theory is a useful tool for a lot of people but fewer people in my circle see it as part of thier identity or culture than it would at first appear.  Equally the majority of people do recognise that it doesn’t work for all conditions.
It’s medical model based if you go by such things as models of disability.  When I read the comment in which One Off Dave said that it was a bit of a facepalm moment for me.  If you haven’t read my original entry and don’t want to read any more of this, basically that one thing can be used to sum up everything I said. 
 I personally am much more social model orientated when it comes to my CP (I’ve not considered models of disability and my depression but my initial feeling is that may be more medical model) – the social model states that it’s not our medical conditions which cause our disabilities but the barriers put in place by society.  For example, if an event is upstairs and there’s a lift then there’s no barrier to me getting to it and taking part and my disabilities aren’t a huge consideration.  If there isn’t a lift or it’s broken then it’s a barrier in my way and my disabilities stop me taking part.
I also wonder if the medical model aspects are inherent because it was written by a woman with an acquired illness rather than a disability lifelong or otherwise.  Perhaps the medical model aspects are why it works so well for so many people.  Because they view themselves as ill rather than disabled.  That’s not necessarily a bad thing even if it’s what puts me off.  I am now wondering if a social model based analogy could be written but I really don’t think I could do it and I’m not sure it would be a good idea even if I could!
Going back to the “making me think” category, Incurable Hippie posted a link to Cutefying Disability by S.E. Smith.  Well worth a read and some brilliant points relevant to this debate and covering other terms used to identify us as disabled people which are becoming part of our culture and the culture of society as a whole.

Finally, Kali made the very much needed point that it’s good that we have these debates but it’s even better that we have them and for the most part can do so calmly and agree to disagree where needed.  We are much stronger united than we are apart.