Going to London

Wednesday, mid morning my mobile rang.  It was a friend of mine who works for one of the organisations I volunteer with.  She was calling in her professional capacity with good news.  A project I organised and ran has been shortlisted for some form of award.  The ceremony is in London, in February. Did I want to go?

Obviously I said yes straight away.  We chatted a bit more and then said goodbye. I spent some time looking up the venue online and being excited and then got on with my day.

Yesterday, a bit before 5pm my mobile rang again.  It was still in my bag where I’d been out all day and I missed it.  I’d just gotten to where I’d left my bag and picked it up to hunt my mobile out when my landline rang – the same person who’d just called my mobile.

“Hi is that Emma?” the unknown voice said.  I said it was and she continued “it’s such and such from so and so publishers, you expressed interest in one of our reader workshops and I just wanted to check when you might be available. We’re thinking [these dates] and we’re in London near Leicester Square.”  We chatted a bit more and she told me they’d be in touch when they settled on a date. Then as she was saying goodbye she mentioned they wouldn’t be able to cover my travel expenses but I’d get a big goody bag with lots of books (I’m not sure our definition of lots of books will be the same). I said I was happy with that. We said goodbye.

I spent sometime online trying to figure out exactly where they are and how I’d get there (I still haven’t quite pinned it down as I can’t until I have details but there are options). And being very excited.

I just spoke to my mum and she said “have they got wheelchair access” and I realised I was so excited I forgot to ask. Oops. I did mention I used a wheelchair however but just in passing and they may not have registered it.

And I tell you what if I get to the end of today without another surprise phone call offering me a day out in London I’m going to be very disappointed!

Laugh

I’ve been trying not to sweat the small stuff so much lately. Given how much I swore when I got an email earlier that some of my Paralympic tickets need changing its safe to say its not worked as well as it could but it has made a difference. So here’s my new theory.

Laughter

Got a chance to sail but the wind is a bit scarier than you’d like? Take a friend on a buddy seat and go anyway. Find something to laugh about.
When it gets a bit hairy? Swear. And then laugh
When three waves hit you in the face one after the other your soaked to the skin and can’t see for a minute or two for water in your eyes? I find madly giggling the best thing to do.
When you know that given how much your being wet has triggered your spasticity changing your clothes independently isn’t going to happen? Well, you know you’ve got CP when you’re thirty, your Dad is going to have to strip you off and help you get dressed again and THATS OK. And “you know you’ve got CP when…” moments always make me chuckle.

Loser Like Me

This entry may come across as cagy. It is deliberately so.

I’ve been dealing with a completely ridiculous access fail for the past 12 weeks. Basically it’s done a complete number on my self confidence and depression, serving as a weekly reminder every Thursday that I’m different and that I’m not worthy of what everyone else has. Twelve weeks of being told they’d made a decision to do X about including me and then suddenly two weeks later we’ll do Y or oh no Z instead.

It is dealt with. I’m not exactly enamoured with the reasonable adjustment type solution they’ve come with. Full the same as everyone else access wasn’t an impossible dream here and is obviously what I would have preferred. They’re aware that they’ve upset me and for the most part what it’s done to me. The fact that during one of our conversations I was accused of using my disability as an excuse being why I say “for the most part”

I’m not saying I no longer care. I’m just saying that this 12 week course is now up and I’m trying to dust myself off and move on.

Anyway I have been listening to a lot of my feel good songs to cheer me up. On Thursday I suddenly realised that Glee’s Loser Like Me should have been on that list. And after listening to it I thought “crip parody!”

Not sure it’s good but I enjoyed writing it…

You may think that I’m a zero
But hey everyone you ever see
Probably end up like me
You may say that I’m a freak show (I don’t care)
But hey give it a little time
Bet life’s gonna change your mind

All of the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me

Push me up against your rancour
And hey, all I do is shake it off
Go and talk to your boss
I’m not thinking bout you haters
Cos hey I could be a cripple star
I’ll see you if you get this far

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

Hey you over there
Keep the “L” up, up in the air
Hey you over there
Keep the “L” up ‘cos I don’t care
You can throw your distance
And you can throw your steps
Like a rocket just watch me go
Yeah
L O S E R
I can only be who I are

All the insults you say
They aren’t so hard to take
(that’s right)
Cause I know some day
You’ll be screaming the same
As me and
I’ll just look away
(yeah that’s right)

Just go ahead and hate on me and run your mouth
So everyone can hear
Hit me with the worst you got and knock me down
Baby I don’t care
Keep it up but soon enough you’ll figure out
You gonna be, you gonna be
A loser like me
A loser like me
A loser like me

♥ Emma

Party Memories (part one)

Small bullet point memories of my 30th birthday party.  I’ve been putting off writing this until I feel less depressed.  I do feel like things are moving forward from that point of view but they’re still bad.  It occurred to me however that I might feel better for thinking and writing about something very cheerful so here goes…

  • It was really, really good fun. I danced so much that my back hurt most of the next day.  That was totally worth it.
  • I’d really agonised over the venue because the party room and bar are on one floor and the two disabled loos are on another (right next to each other which I’m sure made sense to someone…).  There is a lift but I’d worried with the number of wheelchair users we might end up with there could be a big hassles with that. But unfortunately we couldn’t find another venue.  I think I invited seven other wheelchair users but actually the only other wheelie there was <a href=”http://stickmancommunications.blogspot.com”>Hannah</a>. So it worked really great from that point of view.
  • My birthday is actually Christmas Day so this was a very late party (due to Christmas being a rubbish time for any other form of party).  I never expected presents and if anyone asked me what I wanted I told them they didn’t need to bring me presents.  I got loads and loads of presents actually which I didn’t expect.  Some really great stuff too.
  • In terms of who was there I’ve been using the term weird to describe it.  Which probably isn’t the right one. Unexpected, probably is. Basically when I did the invites there were people I thought probably wouldn’t be able to come and others I thought for sure would come. There were also people who I thought wouldn’t stay long and others who I thought would be there until the bitter end.  But it felt like I was wrong on all of those. It was almost like if you were one of the ones I’d suspected (or in some cases they had said)  were coming for an hour or so only you stayed for way longer and one or two I’d figured would be first in last out were anything but.
  • Of my three cousins on my Mum’s side I’d been told two (plus partners) were coming but one couldn’t make it. What actually happened was the two I was expected both didn’t due to illness but the one I wasn’t expecting and his partner turned up and surprised me. Fun stuff and a very nice surprise!
  • Several other people who had said they were coming then didn’t come.  Some let me know not to expect them in advance and others didn’t. In one particular case I found out from another friend that they’d decided not to come which I was absolutely livid about (this was a few days before the party).
  • One of my besties wasn’t well and didn’t come but then popped round the following morning bringing (yet another) unexpected birthday present and an “unbirthday” card. Apparently her husband was very confused by the unbirthday bit as he didn’t know you could buy those. Somehow he missed that fact that card making is her hobby and she’d made it! She then stayed for a while to hear all about the party which was fun. I must admit when she rang however I was all “you can come so long as I don’t have to get dressed.” and I just threw some jama bottoms on while I waited for her.
  • My mum and sister made a massive chocolate marble cake in the shape of a 30.  They made two big roasting tins full of cake and cut it out freehand (using a template). 75 eggs went into the making of said cake bits of which I believe are still in my parents freezer.
  • Everyone gathered round in a big circle with me in the middle to sing happy birthday and for me to blow out the candles.  I think my brother had difficulty holding the cake for that… he certainly said it was heavy at the time.
  • They then did three cheers for me which was embarrassing but sort of fun and everyone danced to Chesney Hawkes One and Only which is my absolute favourite song.  Brilliant and the only time we had absolutely everyone dancing.

Wow actually I’ve gone into way more detail and said much more than I planned about the party. I’m really tired and I think I’ll save the rest of this for tomorrow to save writing a total dissertation in one blog entry.  Writing this has cheered me up and made me smile though… 😉

>You Know You Have CP when…

>… the four things you are most excited about are (in order of when they are happening):

  • Going to see Kate Adie give a talk about her experiences tomorrow night
  • Going out to eat to celebrate Sophie’s graduation/degree results next week
  • The My Sister’s Keeper film coming out at the end of the week.
  • A hospital appointment in two weeks.

And you even more know you have CP when you realise that if you had put them in order of how excited you are, the hospital appointment would be first or second (it was first but I’m really looking forward to tomorrow night so the closeness of that has temporarily pushed it down to second place).

Oh and the appointment?

Brace yourselves.

It’s for the wheelchair clinic.

And we all know what that means…

>”Yay!”

>

A couple of hours ago I spoke to a good friend on the phone.  I mentioned that I came last in the regatta (27/27 – last in bronze and last over all).  Each time I mentioned another of those little bits she said “yay!” and made me laugh loads.  She suggests that I should get a prize for managing to be so spectacularly last.

I really could care less about the regatta but I’m grouchy today for other reasons and that put the smile back on my face.  But it also made me realise just why it is some people think the two of us are weird and don’t understand us.

I do agree with her though – I was in the regatta! Yay!  I came last! Yay! (followed very much by a SO WHAT?!)

>Naidex and Crips and a fashion related question

>I wrote briefly about my Naidex 2008 experience in my BADD post for this year. But I also wanted to write more about it.

I just sent my friend Mary an e-mail and I’m going to copy and paste what I told her about Naidex in here because that’s just easier then trying to say it all again.

A dear friend managed to get the day off of work and went as well. So even though she lives here we traveled separately and I met her up there (only two wheelchairs can be on most trains due to health and safety and we couldn’t find a train with both spaces free but even if we had we would have been in different carriages so it made no difference).

First when I got to Oxford I was met by a member of staff who I’ve known for years as I travel there so often. And as always he made me smile and laugh. There was another person waiting for assistance onto the train I was waiting for and he was most decidedly trying to make it *very* clear that he wasn’t with me or with John (staff member), particularly when our conversation about the sheer number of people they’d had to help on trains to the NEC/Airport (same station serves both) that week degenerated into flying arm movements and John singing “I believe I can fly” to me. I also got told that I got the wheelchair space I’d been assigned was in first class which means I got a free breakfast (cooked to order bacon roll) and as many drinks as I wanted on the train. I got the same thing (but a free panini this time) on the way back.

Then wandering around the NEC and looking at all the new wheelchairs and other things was fun. But what was most fun was being in the majority for once. The fact that everywhere you looked there were wheelchairs and blind people and people with sticks and hearing aids. And that we seriously outnumbered anyone else. The fact that for once no one stopped us to ask stupid questions or spoke as though we couldn’t hear them. No one asked where our carers were and no one batted an eyelid when we were our silly outrageous out there selves. We did get some rolled eyes and laughs but no “oooh don’t do thats” and no “is that safes?!?!” Even when we decided to have a race on the way back to the station everyone just grinned and shifted outta the way. And when people remembered us it wasn’t “oh yeah the two girls in wheelchairs” but it was “oh yeah the leprechauns we already gave you our info” (Elisa wore a shirt which said “the leprechauns made me do it”).

When we laughed at the sheer number of things that had dolls or teddy bears in demonstrating how a person would use them people got it – and when we started joking about how the plight of these poor disabled teddies was hidden and must be brought to the world’s attention the people on the stands laughed too.

And when we went back to the station I had an hour before my train but the staff went above and beyond to try and find me a wheelchair space on an earlier train when they didn’t have to do that. So Elisa went home and I hung out at the station for a while longer. Another lady in a wheelchair tried to get on the same train (she hadn’t booked in advance as I had) and was extremely rude to the station staff – screaming disablism and threatening to sue. She tried to get me involved and I pointed out to her that 1) it’s a health and safety issue so that if the train crashes the emergency services know what the maximum number of chairs is on and where they will be and I am all for that idea. and 2) Being that Naidex is basically disability central I would never have considered not booking and I was just grateful they tried to get me home early. I don’t know what happened to her – but I do know that the staff were quite shaken up because I went onto the concourse to wait and they found me and thanked me for sticking up for them. They let me go wait in the first class lounge with it’s nice view and free biscuits and drinks and papers and nice clean disabled toilet.

I really felt very special by the time I got home.

One of the things I don’t think I have made clear properly either in this e-mail or in my earlier writing about Naidex this year is how much of a cultural experience it is/was for me.  The purpose of the day is not to feel like you are part of a huge group of PWD and that you are all coming together and having a shared experience.  It’s to learn about equipment and organisations and adaptations and all that jazz.  I have no idea if the organisers are even aware of how powerful of an experience it can be.

But for me – it is a powerful experience.  It blends in with my identity as a disabled person and it helps me to embrace my culture.  Being in the majority like that is HUGE.  And even though I didn’t speak to any PWD about identity or about culture and I didn’t really speak to many people other than sales people having a day like that every once in a while just really helps me.

***

Changing the subject slightly, but also not, I wanted to also touch on the use of the term Crip.

I am a crip.  Or a cripple.  Or whatever the hell I want to call myself.  Hell, I’m also Emma.  But just lately whenever I refer to myself as a crip or a cripple I get rubbish about how I deserve dignity and I shouldn’t belittle myself like that.  Calling myself a crip is acknowledging who I am.  It’s saying “yup, so what?!  I am disabled.  What’s the big deal.”

It’s a slightly annoying experience even though I know those who say that to me are well meaning and think they only have my best interests at heart.  We just don’t seem to see eye to eye on what my best interests actually are.  Part of me thinks I should start moaning when people refer to themselves as being able-bodied or healthy and see if they get it.  But then the realist in me knows that they won’t and they’d just think I’m weirder than they already do (not exactly a bad thing but…)

One thing I really love is slogan tops.  I am suffering at the moment from a shortage of appropriately sloganed tops.  And I have never had any disability identity or crip culture related slogan tops.  This is a situation which I am planning to rectify with some rapid action in the very near future.

At naidex I did see a couple of slogan tops – one only came in child sizes (or thats all they had) and it said “Wicked on Wheels.”  I really want that shirt!  I forget what the other said, it wasn’t as interesting.  Might have been something about staring?

Anyway so ever since then I’ve been toying with the idea of making myself  a top that says CRIP on it.  And then having an acronym underneath it.

One of my friends suggested Cool Respectable Independant Person.  And my brother suggested Carrots Rhubarb Ice cream Pasta.  but neither of those really appeal to me.

I also looked at the phonetic alphabet and it would be Charlie Romeo India Papa which is slightly more interesting and cool but still not quite right.

So does any one have any ideas?  Basically  years ago you used to be able to get those rip off FCUK tops that said Funky Cool Ultra Kinky on them and I’m thinking something similar something which screams “Em!” but I can’t think what it is

>Gift Train

>Meme time again!

Kay over at The Gimp Parade posted the following about this meme and well, i’m in.  Here’s what she wrote:

Gift train

Like a meme, only it can invade your snail mailbox:

Via Grace at What If No One’s Watching? — By the end of January, 2008, I will send a tangible, physical gift to each of the first five people to comment here, so long as each of those five people are willing to make the same offer in their own LJ or blog.

I’ve taken the liberty of giving myself a month’s more time to accomplish this. Also note that “tangible and physical” possibly means “whimsical and odd.”
Happy holidays.

So the first five people who comment here will get a gift sent to them.  And if my readers will please note that tangible and physical possibly means whimsical and odd like Kay wrote but more than likely also means some for of craft.

So, get commenting, get posting to your own blog and if you comment e-mail me your address at Emma [@] wheelchairprincess.com