difficulties – A Writer In A Wheelchair

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on ~~the street~~ the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except, to me, it’s not, really. It’s national CP awareness day in the US. I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point. I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do. I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…). I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma. If only… if only…”

I don’t need a cure. I’m pretty much perfect just the way I am. I’m the person I’m meant to be right now. Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more. Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things. I believe disability awareness is important. It’s through the disability rights movement that the community as a whole can improve access and achieve things. Focusing on little things for one condition or another can’t do as much much as focusing on the majority. Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP. Because to me CP isn’t just one day – it’s everyday. And I’m much too busy to do anything more than live my life.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

Talking, Ten Years Later

It’s that time of the month again when I mosey on over to Bea Magazine and share what I’m thinking, feeling, doing, whatever with them.

I don’t like February. There have been a lot of tough times in previous ones and there are several anniversaries now in a short time. It’s been long enough now that most of their sting has gone but still it lurks. This year I remembered the dates but it wasn’t until several days into the month when I wondered why I felt down and put it together that its often a time I struggle.

Yesterday marked 10 years since I was first diagnosed with depression. It is what it is. I can’t change it and I’m not sure I would if I could.

I’ve written a bit about that over on Bea in Talking, Ten Years Later.

>Oh The Weather Outside is Frightful

>I suspect that the weather will mean I can’t go to the bureau tomorrow or indeed out of the house at all. Blah. In fact, I would say the odds are currently not down to zero because it ain’t over till the fat lady sings and I’m not singing… yet but that they are pretty damn close to zero.

In fact having just gone and openned the front door and peaked outside between writing that paragraph and this one I’m thinking that a miracle would be needed to get me out of the house tomorrow morning because I sure as hell would struggle to go out now.

I popped into Sainsburys yesterday afternoon to get some stuff in case I was snowed in (usually I would go today) but managed to do that very clever thing where you get home and realise you’re nearly out of something vital, in this case sandwich fillings and margarine. So when I went out to meet my friend this afternoon I popped back in to get those things and some freezer stuff. And remembering the five days running when I couldn’t leave the house last February due to the snow I got some treats too. It was snowing a little and just beginning to settle as I walked home.

I have a lot more perspective on that possibility now. Partially from having had the experience previously so knowing what to expect. But also because when I spoke to my mum earlier she told me the weather has meant that my Great Aunt hasn’t left the house since Christmas Day and is going stir crazy. She’s in her 80s and lives a while away and quite out in the sticks. Her more local family (she doesn’t have children) are further away than my family are from me too I think although I know she sees them regularly and they’ll be helping her out. She probably won’t get out of the house for a few more days either.

That’s practically two weeks she’s been stuck inside… puts my probably only a few days or so stuck in the house (I hope!) into perspective.

In many ways when I talk to The Great Aunt (as she sometimes signs cards; she isn’t my only Great Aunt) I can see a lot of similarities between her and me in terms of likes and dislikes and both of us being very independently minded. But something tells me she probably copes with being stuck in due to snow much better than I will ever do!