I quite like Megan Trainor’s All About That Bass. But if I am going to share a version of that song it’s not going to be that one. Because you know I’m all about that disability bout that disability bout that disability (sorry I couldn’t resist).
A you tuber called Heather Schouten who uses a wheelchair has done a version called All About That Chair. And it’s incredible.
I can’t find a copy of the lyrics but this article in The Independent includes some of them. The article in my opinion borders on inspiration porn and probably sees things in the lyrics that aren’t there. But the song is awesome.
I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it.
I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the way my dreams are – although even as a young child in my medicationless days I still remembered some of my dreams. But I think I read somewhere that baclofen can cause nightmares in young children? So it wouldn’t be too much of a stretch to think it’s got something to do with the way my dreams are. (Side note I wrote half of this entry then came back to finish it a week later. During that time another CPer brought up the baclofen weird dreams thing so it seems I’m not the only one)
Anyway my recurring dream is that I’m out somewhere, it could be anywhere and usually is a different setting each time I dream it. And I’m not in my wheelchair. I’m walking around. Whatever’s going on in the dream is happening and all is good. But then in the dream I suddenly remember that I can’t walk. The dream is derailed (I think last time I was in a shopping centre and trying to find somewhere to buy a sandwich) and I spend the rest of it hunting around, crawling or more likely shuffling on my tummy (as thats what I actually have to do if I don’t have a mobility aid) in a bit of a panic looking for my wheelchair. This is always a dream and as yet has never taken the form of a nightmare but every few months I’ll have a variant of it.
So when a dream is a wish your heart makes when you’re fast asleep came to mind I started wondering what wish that dream could represent.
My first thought (and it was one I didn’t like) was whether it could be construed as a secret wish to be able to walk. I imagine that’s what a lot of people reading this would take it to be. Especially those who knew me back in the days when I was a long distance manual wheeler and short distance walker but who don’t see me often now.
I can stand. I can take a few steps when I transfer and very very very rarely if the stars align meaning I both need to and I’m having an amazing day at the same time I can walk a few metres with a walker (specifically, for the curious, I have a rollator). Yesterday and today were the first days that happened since the first week in January.
I’m really glad I have the level of mobility I do. I work hard with the help of my family to maintain that. But walking is exhausting, it’s painful and the risk of a fall and injury is always lurking unseen. Plus, I have no balance so I can’t do or carry anything when I’m on my feet. If I’m in my chair I have less pain, it takes less energy, my seating support means my balance is much less of an issue. I can do things and be independent in a way that I never could without my wheelchair.
In the past almost 13 years since I went to uni I’ve gone from using a walker inside and a manual outside through using a manual all the time to my current set up where I use my manual in the house and a couple of other places and use my powerchair if I’m out. There are small changes I’d like to make – I at times miss my mad wheeling skillz I had with my manual in my uni days – but walking isn’t one of them. For someone like me walking really is overrated.
No what I think the dream represents is a feeling of safety and independence. Because as well as giving me independence my chair makes me feel safe. I can move much quicker, safer and easier. I can react if I need too. When there was an argument outside my flat right a few days ago I delayed going to bed until it stopped. I felt I needed my mobility just in case.
And most of all it represents being whole. Because my wheelchairs are a part of my body. And a huge part of me. So maybe dreaming that I’ve lost it and panicking until I find it is about being accepted. By others and by myself.
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
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… 😉
>I first started thinking about using this song for a Monday Music last week after the comments made by Philip Davies in the House of Commons (he said that disabled people should work for less than minimum wage as they are less productive.) People were tweeting how they were not worthless and it came to mind. But in the end I tweeted a link to a video of Bruno Mars, Just The Way You Are.
Then it turned into a bit of a week when people make stupid comments about my disability.
First, earlier in the week someone was saying where the disabled loo was at the event and another person went “where’s the normal one?” to be honest I found that kinda funny but she was totally and utterly mortified when she realised what she’d said and apologised repeatedly. I’m sure she was much more bothered than I was.
Then on Saturday I asked someone “so… how are you?” The gestured at my wheelchair and then went “well… better than you.” I said “I’m fine.” and she said “I know you are” That did make me want to roll my eyes but it’s someone I know well who hasn’t been at all well, who didn’t look good and said it in such a stiff upper lip “mustn’t grumble” type way that I understood and let it go.
A bit later I was out for a bit of a wheel and an acquaintance stopped me to ask if I wanted a push. I said no and we chatted a bit. We’ve known each other a few years but only on and off and really don’t know each other that well. Our conversation went a bit like this:
“How long have you been disabled?”
“From birth. I’ve got CP the same as [a CPer we both know]”
“oh how tragic.”
“What?!”
“Well you were whole and then there was an accident with your birth and now you’re disabled”
“I’m whole now. And anyway a lack of oxygen at birth was never gonna turn out well. Better disabled than dead.”
She got called away at that point which was probably a good thing. I was very annoyed by that conversation. Being disabled doesn’t make me less of a person. But I didn’t lose it with her because I didn’t feel I could and also I was shocked by the way the conversation had gone. Now I’ve had time to think about it? Not happy at all.
I’m a sailor, a writer, a volunteer CAB adviser, a knitter, a friend, a daughter, a sister. I’m messy, I’m opinionated, disorganised and loud. I dye my hair crazy colours, spend too much time on twitter, read crappy fanfics and go to bed much too late. I lose track of time reading too many books, like Doctor Who and want to start watching Grey’s Anatomy again. I eat too much chocolate and drink too much coke. I’m learning to crochet and have piles of unused scrapbooking materials. And yes I have both depression and CP. And I use a wheelchair. But none of those make me any less of a person who spends all their time on their own two feet. The most important thing? I’m me. I’m Emma.
So for this week’s Monday Music I’m sharing Born This Way. Originally by Lady Gaga, this is the Glee version. Mostly because the Lady Gaga video is really annoying (the song doesn’t start for several minutes into the video) but also because, basically it’s Glee. I love the tops they wear too.
It doesn’t matter if you love him, or capital H-I-M
Just put your paws up
‘Cause you were born this way, baby
My mama told me when I was young
We are all born superstars
She rolled my hair and put my lipstick on
In the glass of her boudoir
“There’s nothin’ wrong with lovin’ who you are”
She said, “‘Cause He made you perfect, babe”
“So hold your head up, girl and you you’ll go far,
>A few weeks ago I heard this song again and wanted to share it here. But I was sure I’d already done so a while back. I went hunting for the entry it was in and I can’t find it so either I was wrong about that or it is here but not filed under the obvious category.
It’s about the way in which we live – and good ways to do so. It does make reference to God at one point. I don’t particularly agree with that part of it but it’s still a good song. Overall I love the message it brings and it’s one I agree with.
Point of Grace – How You Live (Turn Up The Music)
Wake up to the sunlight With your windows open Don’t hold in your anger or leave things unspoken Wear your red dress Use your good dishes Make a big mess and make lots of wishes Have what you want But want what you have And don’t spend your life looking back
Turn up the music Turn it up loud Take a few chances Let it all out You won’t regret it Looking back from where you have been ‘Cause it’s not who you knew And it’s not what you did It’s how you live
So go to the ballgames And go to the ballet And go see your folks more than just on the holidays Kiss all your children Dance with your wife Tell your husband you love him every night Don’t run from the truth ‘Cause you can’t get away Just face it and you’ll be okay
Oh wherever you are and wherever you’ve been Now is the time to begin
So give to the needy And pray for the grieving Even when you don’t think that you can ‘Cause all that you do is bound to come back to you So think of your fellow men Make peace with God and make peace with yourself ‘Cause in the end there’s nobody else
I wrote on the NaNo Oxfordshire forum yesterday that Who Needs Sleep by Barenaked Ladies is my NaNo song. And I just started the video for it playing. I never realised exactly what that first line is but now I do I think it’s not my NaNo song, it’s my everyday of my bloody life song.
Coz I ask my carers to put the sheets properly back on my bed practically every time they come… and I do it roughly myself in between times.
Barenaked Ladies also have a song that sums up my thoughts on the getting a new carer soon situation too.
**
And one that when sang with sarcasm sums up my last other carers then my (soon to leave) regular one or you lose the sarcasm and it works for my current carer (Multipurpose songs of my life! I love it!) – Thanks, That Was Fun.
**
Basically, it appears that BNL have a song for most aspects of my life. Because If I Had $1,000, 000 sums it up for me too.
>I travelled up to Birmingham yesterday and met up with my friend Rachel who I met at university and lived with for a year. It was really fun. Long, long day though. I ended up being out of the house for practically 12 hours (literally five minutes more and it would have been 12 hours). But so worth it.
I had a wander round the shops while I was waiting for her, we went to Pizza Hut, had another wander round the shops together and then went to the theatre to see the Mary Poppins musical. Went to Starbucks for a drink after (couldn’t track down an accessible pub on our way), wandered a little in paperchase then came home. Didn’t buy anything in all that shopping but I did get some merchandise at the theatre.
I loved loved LOVED the show. It’s touring at present but instead of a week here and a week there it’s just doing a couple of months each in about four or five places. I’m glad I had my initial “Birmingham is too far” thoughts (figuratively) slapped out of my head and arranged to go. The best bit was seeing the different ways in which they did things which were in the film. Supercalifragilisticexpialidocious was probably the best of those.
Some parts of the show aren’t in the film and vice versa. Rachel said she didn’t like one of the songs that isn’t in the film and whilst I didn’t think it was the best of the songs I wouldn’t go so far as to say I didn’t like that. To me the differences were part of what made it so magical.
And it was magical, it really was. There were stunts done in there that I didn’t think were possible in a small touring production. But then again 1) I don’t know this can be called “small” and 2) I suspect that might be part of the reason why they aren’t doing a huge multi-venue tour.
I think my favourite-ist song was one that wasn’t in the film – Anything Can Happen.
It’s got great lyrics which make me laugh and smile. And a fabulous message, one I need reminding of now and then – Anything can happen if you let it – I’d not thought I needed that reminder now but I guess I did because it’s made me feel more determined about a few things I’ve been debating.
[MARY POPPINS] Anything can happen if you let it Sometimes things are difficult but you can bet it Doesn’t have to be so
[JANE] Changes can be made
[MICHAEL] You can move a mountain if you use a larger spade
[MARY POPPINS] Anything can happen, it’s a marvel
[MICHAEL] You can be a butterfly
[JANE] Or just stay larval
[JANE & MICHAEL] Stretch your mind beyond fantastic Dreams are made of strong elastic
[MARY POPPINS] Take some sound advice and don’t forget it
[WINIFRED, JANE & MICHAEL] Anything can happen if you let it
[WINIFRED] I wonder…
[ALL] Anything can happen if you let it
[WINIFRED] You won’t know a challenge until you’ve met it
[MICHAEL] No one does it for you
[WINIFRED] No one but yourself Vacillating violets get left up on the shelf Anything can happen, just imagine
[MARY POPPINS] That should be epitaph I wear the badge in Hhonour of this world’s free thinkers
[WINIFRED] Those who see beyond their blinkers
[JANE & MICHAEL] Jelly isn’t jelly
[WINIFRED, JANE & MICHAEL] ‘Til you set it Anything can happen if you let it
[MARY POPPINS] Anything can happen if you let it What good is a whistle
[BERT] Unless you whet it
[MARY POPPINS & BERT] Broaden your horizons
[BERT] Open different doors
[MARY POPPINS & BERT] You may find a you there that you never knew was yours
[BERT & MRS CORRY] Anything can happen
[MRS CORRY] Raise the curtain Things you though impossible
[BERT & MRS CORRY] Will soon seem certain Thought at first it may sound clownish See the world more upside-downish Turn it on its head then pirouette it
[BERT, MRS CORRY & LAMP-LIGHTERS] Anything can happen if you let it
[MARY POPPINS] If you reach for the stars All you get are the stars But we’ve found a whole new spin If you reach for the heavens You get the stars thrown in
[ALL] You get the stars thrown in
If you reach for the stars All you get are the stars But we’ve found a whole new spin If you reach for the heavens You get the stars thrown in
Anything can happen if you let it Life is out there waiting so go and get it Grab it by the collar, seize it by the scruff Once you’ve started living life you just can’t get enough
Anything can happen, it’s official You can choose the super or the superficial Sally forth the way we’re steering Obstacles start disappearing Go and chase your dreams you won’t regret it Anything can happen (Anything can happen) Anything can happen
[MARY POPPINS, JANE & MICHAEL] Anything can happen
>Sailing starts again on 14th April (just under two weeks!) and we’re having the beginning of the season get together this evening.
More commonly referred to as The Coming Out Supper.
You can probably guess what I’ve been running around the house singing ever since I found out it was tonight…
I’m coming out (I’m comin’) I’m coming out I’m coming out I’m coming out I’m coming out i’m coming out
I’m coming out I want the world to know Got to let it show I’m coming out I want the world to know I got to let it show
There’s a new me coming out And I just had to live And I wanna give I’m completely positive I think this time around I am gonna do it Like you never knew it Ooh, I’ll make it through
The time has come for me To break out of the shell I have to shout That I am coming out
I’m coming out I want the world to know I got to let it show I’m coming out I want the world to know I got to let it show
I’m coming out (comin) I want the world to know I got to let it show I’m comin I’m coming out (comin) I want the world to know I got to let it show
I’ve got to show the world All that I wanna be And all my abillities Ther’s so much more to me Somehow, I’ll have to make them Just understand I got it well in hand And, oh, how I have planned I’m spreadin’ love There’s no need to fear And I just feel so glad Everytime I hear:
I’m coming out I want the world to know I got to let it show I’m coming out (comin) I want the world to know I got to let it show I’m comin (x3)
(the music bridge)
chorus x5
I’m, I’m comin OUT! I have to shout that im comin out, i have to work it out I have to let it out o yeah ……
Diana Ross
Should really be great fun… and I’m looking forward to it.