Because this is happening…
I am disabled. Mostly by society.
I am on wheels. Everyone should know this by now. Regular readers, anyone who reads my About page, people I’ve worked with, laughed with, gotten lost with, my parents and the man who loves me. That’s everyone.
What people may not know is this: I am totally OK with it. My CP means that I will never run a marathon. I may drive one, though. It means I don’t go to the gym. I probably should, but I don’t have to. I can do laps around my house, or push my myself uphill. Or over cobbles.
I’m never going to walk down the aisle, but I may get funky new wheels for the occasion. I don’t care how I get there, I’m more about the the man at the end, and the people there with us.
Yes, CP sometimes sucks. So do taxes. Taxes are worse.
Other posts from where I sit:
I have a confession to make. I have not been planning/dreaming of my wedding since I was six years old. There are no scrapbooks, files, dog-eared wedding magazines from the ‘80’s. The first and only time I made any kind of short-lived scrapbook, I glued my fingers together. True story.
Two and a half years ago, I began to picture myself married. To Sarge. Being married, that is. Not the wedding.
And so, when we began to discuss what the actual wedding might look like, I had only a few ideas:
I’d like to get married outside
He’d be in a
And my dress and I would sit comfortably in my chair, at the same time.
With more butterflies than flowers around
This is the list we took venue-shopping a few weeks ago.
Now. I’d heard that people selling their services don’t like to talk to the groom and direct everything to the bride. We went to three places. Two people directed their questions to both of us. Super cool. One person spoke only to Sarge. Not cool. He was a bit confused when we both answered back. Which was cool.
The thing is this. Sarge isn’t marrying himself. I would be totally supportive if he wanted to, but he doesn’t. He wants to marry me. So, yes, Mr Co-ordinator who doesn’t like his job, that makes me the bride. Disabled people get married, too. I read it online somewhere.
For me, this means that if we were to get married outside, I’d need a flat aisle. No carpets over grass. We’d even make a platform. But we’d have to be allowed to use it. Not being allowed to use it would be a little thing called a deal-breaker. That means we’re going to take our money and our wedding somewhere else.
We have provisionally booked an indoor venue more beautiful than any picture I could have pasted in a scrapbook, if I had one. Which I don’t.
I do, however, have some Pinterest boards, which are less messy. Maybe.
When I was a kid, people were always telling me to ‘have patience’. I thought it was some kind of gift, one that I’m still waiting for. And I’m not good with waiting.
Well, that’s not necessarily true. There’s a part of me that likes to burn candles and incense and become as blissed out as someone who is into that sort of thing. Because I am into that sort of thing. But I also think sleep is a waste of time. And this may surprise some people who know me off-screen, but I don’t like doing nothing. Being idle makes me itch.
Take yesterday for example, I was on the couch for hours waiting for spare parts and if that didn’t work, a spare chair. I’ve been saying I needed a change of scenery, but that wasn’t exactly what I had in mind. Let me back up a bit, because now I can.
I’ve wanted to see Avenue Q since it was new. When we were in New York, it was on in Glasgow, so Sarge and I met up with a friend of mine from way back and we saw The House of Blue Leaves. Great show. We got home and missed Avenue Q again, because we went island-hopping instead.
Anyway, Saturday’s tickets were an early Valentine’s gift (or as Sarge would say, Happy Arbitrary Day in February), and also third-time lucky. And the show was every bit as colourful and fun and funny as I thought it would be. Good times. Made me want to go back to NYC. (I know, I still have to write those adventures.)
We went to dinner after the show, and then for coffee. We contemplated rounding the evening by going to see the new Muppets film and decided that might be over-kill. And then we went to the pub. In all honesty, no matter what we do, I haven’t had a bad date since October of 2009. They haven’t been bad, but they’ve always been interesting.
Back in April, we were on our way to dinner, and I ended up with a rather artistic eyebrow. In April it was gravel and some glue. On Saturday, the front wheel fought with a cobblestone. We soon found out the wheel lost. But I managed to keep my ass in the seat this time. And so, to the pub.
I transferred to a comfy couch and noticed that the front wheel was bent underneath the chair. I can’t even get angles that good.
Essentially on three wheels, I again broke my No Cider rule. While Sarge googled ‘Spare wheelchairs in Edinburgh’. Even though I am an actual multiple card-carrying wheelchair-user, I don’t have a spare chair. I’ve had this one for years, and I recycled the last one for parts. Parts that other people could use. The one before that is in my mother’s garage somewhere. Probably next to some yarn, a few lamps and my Poppy’s old tools.
This one has a lifetime warranty. On the frame. When a castor bends like this weekend, there’s an emergency call-out service. The same one I found when a broken bottle shredded my apparently not-so-industrial tires AND inner-tubes last year. That was the last time I had to be patient.
Back to Saturday, we got a taxi from the pub. We had trouble even getting one of those. When we called we mentioned the three-wheeler deal, and it seemed to be fine. The taxi arrived, and Sarge went off to tell the driver I was around the corner.
Sarge came back. Not in a taxi.
‘He may not take us, because it’s broken. He says he doesn’t want to get sued. He’s calling in to see what he can do.’
‘He can grow a pair and take the fare.’ Yes, I sometimes speak in rhyme. It’s unintentional.
He did. I climbed up and sat on the seat and the chair was lifted in after me.
The taxi-driver must have mentioned his ‘insurance’ and ‘the Law’ at least ten times during the five-minute journey.
‘If something happened, you could sue me,’ he said.
‘That only works if the chair isn’t busted before we get in the cab.’ I said.
I hobbled to bed on three wheels.
I stayed in bed while Sarge called the repair dude the next morning. I stayed put, but my mind did not. What if he couldn’t get here? What if he didn’t have the parts? What if I had to reschedule important meetings this week because I couldn’t get out of the house?
Then, I’d wait. Because I’d have to. I would have to have patience. Because even more than patience, I need working wheels under my ass. Everything else could wait, including me.
Sarge came back and said that I’d have one new castor or a replacement chair by 3 o’clock. I could do that. I went to the bathroom on my three working wheels, and then deposited myself on the couch, using my lap-top on my actual lap. I might have blasted the Avenue Q soundtrack, and then watched Muppets in Space. Because it was on. And I wasn’t going anywhere.
The repairman came in and put my wheel and some new bolts into a castor that wasn’t bent. After talk of replacement stems and forks, I was back on all wheels and feeling taller.
Sarge and I then left the house. Because I could. We went to the new Muppets movie. This seemed to be a good weekend for muppets.
And today, I drove out to the living room; my laptop is back on the table. I need to print out something for this week. The printer is out of ink. Sarge might pick some up on his way home.
I can wait.
Sarge and I still date. Each other. It’s allowed. And also important. When he’s working late, and I’m not working enough, dating is a way for us to remember what the other one looks like without tired eyes (his) or PMS (mine). These days, our dates are weekend trips to the movies after having coffee that Sarge doesn’t have to make for me. And I promise, these dates do differ from our nights in with fish and chips and a box-set (Northern Exposure, The Sopranos, Spaced, Black Books.)
And so yesterday, high on holiday mochas with whip, we rolled into the cinema to see Hugo. We asked for our tickets and there was a pause.
The wheelchair space needed to be ‘released’ and this required approval from the manager. The manager comes over and eyeballs me, possibly waiting to see if I’ll leap up and proclaim that I only use the chair to get the not-really discounted seats.
‘We have to make sure that the space isn’t booked by someone who doesn’t need it, you see.’ He said this to Sarge, not me. ‘And there’s your ticket. So you can sit next to your colleague.’
‘She’s my girlfriend.’
‘Oh. Enjoy the show.’ He went away. Leaving us with the girl at the counter.
‘Are we colleagues?’ I asked Sarge. ‘Because, you should know, I don’t sleep with my colleagues. And if we did work together, we’d never get any work done.’
‘No’, he said.
And with that we went into the movie. Where I transferred into a seat and Sarge parked the chair into its designated space.
‘Can I hold your hand? Or is that not allowed? Since we’re colleagues?’
‘That’s okay, I think it’s in the contract somewhere,’ I said.
I have CP. I hire a PA to do all the things Sarge, as my boyfriend, shouldn’t have to do. Nor would I want him to. I have been on friendly terms with all my PAs; we have a laugh on the way to my office building. Where I work. With my colleagues. Sarge is not one of them.
Saturday was the International Day of Persons with Disabilities, and this is also Disability History Month in Scotland. I’ve been trying to think of something to say about these important days. On Saturday, I wrote words that had nothing to do with my CP, and then I spoke to my Dad. When Sarge got home from an afternoon spent playing ancient geek games, we had the aforementioned fish and chips and shared our evening with the Sopranos.
And yesterday I went on a date. With my boyfriend. Because I could. I can celebrate Saturday, and any other day, by just being here. Living my life, changing the things I can and hoping for the rest. Because that’s all anyone can do.
I mentioned earlier that I wanted to say something important and worthwhile within my ramble, I guess my two c(p)ents is this. Every disabled person out there has family and friends, people who care for them and support them, without being paid to do so. Some have partners and jobs. We even go to the movies.
After Hugo, Sarge and I came home, where we weren’t colleagues. Sometime in the future we might be, if I break my own rule and we ever open that bookshop we talk about. But that’s another post.
Someone got stuck in our lift yesterday. No, it wasn’t me.
Unlike other buildings I’ve lived in, the engineers came out quite quickly, and it was working again almost before I knew it was gone.
People have actually asked me if I’m afraid of lifts. Well, no. If I were, I’d be screwed. Or at least much thinner than I am.
As I’ve said before, I have no issue with stairs if friends and beer greet me at the top.
But the place where I choose to burn my popcorn, take my shoes off and live must have a lift.
And sometimes those lifts don’t work. I’ve missed concerts, appointments, really good chocolate and hours off my paychecks due to faulty lifts that mean I can’t leave my flat. On those days, the party comes to me.
And yes, I have been stuck in a lift. I’d just come back from shopping and so my friend and I ate sushi while waiting to be rescued.
I’ve also been stuck in boxy “open-air” stair-lifts. Up in the air. From my vantage point near the front door, I greeted people I knew as if sitting in a box suspended off the ground was something I did for fun. I was on a first-name basis with the engineers who took the call-outs for that building.
All of this has provided me with an interesting excuse for days off, a cool vantage point from which to people-watch, some nifty refunds and good stories to tell n the pub. Which is where I’ll be tonight. If the lift works.
And the story I’ll tell will be the one where I got in the lift after work today, and the belt from my jacket got caught in the door. And I really did look to see if the belt was attached to the jacket, and therefore to me. It was not. The belt crept higher and higher up the doorway. I stayed on the ground. And then I made it to the ground. I held my breath until the doors released my belt, and the lift released me.
I like my rain like I like my snow. Drumming on the roof and trailing down the windows while I read a book and sip hot chocolate. Candles optional. Marshmallows mandatory.
I can’t drive in rain jackets. They flap about and slow me down and are generally useless. They get caught in my wheels and rip and get gross and unpresentable.
I do have ‘clothes guards’ on my chair. But I think they should be fired.
One of my nicknames at University was Bat-girl, on account of the black rain cape I wore when the weather called for it.
I’ve even been known to wear waterproof trousers. OK, I only made that fashion statement once. In a field. Listening to music. In the rain. It was great, and trust me, nobody cared how they looked that day. And neither did I.
On rainy days, I could get an umbrella to hook on the back of the chair. I prefer the cape and frozen hair look, more suited to my personality.
But I haven’t worn a cape in years. My most recently retired rain jacket had ingrained tire tracks at the sides that eventually refused to come out in the wash. I ‘lost it’ in the back of my Dad’s car.
I got something a bit more fitted that doesn’t touch the wheels when I drive.
Sarge says I look like I should be out solving crimes while saying ‘one more thing!’
Last week, during a particularly epic down-pour on the way to work, I actually held an umbrella while my PA pushed me. The windier it got, the more the umbrella acted like a sail, and I kind of glided to work.
It was difficult to keep a hold on the umbrella. I found my own version of Mary Poppins frustrating and then funny.
The sailing umbrella was fun. But kinda useless. I arrived to work soaking wet, making puddles on the floor as I trailed to my desk
‘Anyone have a hair-dryer?’ I asked. ‘For my clothes?’ Nobody did.
I would have even parked myself underneath a hand-dryer in the bathroom. But we don’t have hand-dryers.
Perhaps next time it rains I should wear my waterproof trousers. Or take the bus.