You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

On being a writer

I know you want to sing. See. I love to sing. Nothing makes me happier.I either wanted to be a singer or the head of the Ice Capades. Hey. Do you know who the Ice Capades are? Don’t roll your eyes. They were very cool.

I went to my mother who gave me this book…called Letters To A Young Poet. Rainer Maria Rilke.

He’s a fabulous writer. A fellow used to write to him and say: “I want to be a writer. Please read my stuff.” And Rilke says to this guy: “Don’t ask me about being a writer. lf when you wake up in the morning you can think of nothing but writing…then you’re a writer.”

I’m gonna saythe same thing to you. If you wake up in the mornin’ and you can’t think of anything
but singin’ first…then you’re supposed to be a singer girl.

(from Sister Act 2: Back in the Habit)

Sometimes people ask me about writing. Advice on getting started as a blogger, or can I tell them about opportunities that are out there.

If I’m completely honest I’m probably not the best person to ask.

I love to write. Love love love it. But I don’t do it as often as I’d like to. Or even as often as I should. I’m the Queen of Procrastination.

I’ve been blogging and writing for a long time. Hell, I started doing it before blogging even existed. When I first started sharing my life online it was November 2000, they were called online diaries and everyone looked at you like you were really weird if you told them you wrote a diary and shared it for anyone to read (I’ll admit it: I was an avid DiaryLand girl. And sometimes I still miss that oh so basic but so wonderful site.)

That’s 13 years. The idea of so many years of my life being online blows my mind. If my blog was a person it would be a stroppy girl kicking and screaming and complaining that it’s not fair. And no one understands it. And if only it could be noticed and allowed to do it’s own thing it would be brilliant. A star even.

As much as the teenage metaphor started off as just a bit of fun I do think its also it’s a valid one for writing.

It’s harder then it seems. People who don’t write think it’s an easy thing. People who are just starting out don’t always understand the work involved. And there will always be times when I email a site with an idea and they turn me down, or I read an article and think “I could have done better” if only they’d let me try.

I can give advice on writing and blogging. But I’m not sure I should.

I’d probably just say its hard but it can be really worth it and you can get a lot out of it. Blogging is a great way to start in my opinion.

I could tell you about writing opportunities. If I googled them first. And I’m kinda selfish.

I put the work in. I found what was out there and made it happen. The two main other sites I write for are invitation only. I worked hard to get my slots. It makes me angry when people just expect me to get them slots on invitation only sites or let them guest post on my blog and then get annoyed with me when I say no (note for people thinking about guest blogging: do your research. I do not accept guest posts on my blog and even if I did most of what’s sent to me is a poor match. It seems they’ve just gone “disability blog” and not read any of my content).

I realise my saying no annoys you. I’ll say it again. Writing is hard work. Your expectation makes me feel you’re belittling my achievements. Your expectation pisses me off.

I could recommend articles and writers to other sites. But there’s no point in my doing so if I don’t think it’s right. My reputation is important to me and recommending or sharing the wrong stuff for the wrong site (or on my blog) could put that at risk.

I want to be helpful and support other writers. But I can’t do it for you. And I want to be a writer more than that.

The only way to be a writer is just to write.

The National Diversity Awards

So if I were to mention the name Hannah Ensor or Stickman Communications I suspect a lot of people who read this would know who I meant.

Hannah and I have known each other since our school days. Back then I was rocking the wheelie thing but not quite as well as I do now. I was walking a lot of the time which took a lot of energy and I’d fall a lot. I didn’t hurt myself often having learnt mad falling skills. And the level of acceptance i have now (possibly better referred to as my “sod it quota”) was an unthought of dream,

Hannah was this accident prone girl who was always hurting herself in the most random ways and making us laugh. I swear I have more memories of teenage Hannah turning up to our weekly German lessons on crutches or otherwise injured than not. She denies this 😉

As teenagers often do we lost touch when school ended.

Then several years ago I was in town and someone with a really cool wheelchair was waiting in a queue next to me.

Hannah.

Turns out, she wasn’t as weirdly accident prone as we thought. She had a disability.

I see her semi regularly and sometimes we get together with another friend of ours. Its brilliant. we laugh a lot and support each other and its just great to be with old friends who understand that supermarket pharmacies are rubbish, buying bread in a bakery is NOT worthy of high praise, it is possible to have a favourite type of pain and, frankly, that applying to work part time for the fire service does kind of make sense as a plan for warding off relapses of potentially life threatening illnesses

Hannah’s awesome stickman products help bring a similar sort of education, acceptance and fun to the wider public when it comes to disability awareness. She’s been nominated for a National Diversity Award in the disability category because of this work. I think she deserves it and the more nominations she gets the more chance she has.

She doesn’t want to push it onto people too much so I’m asking here – please nominate Hannah!!

Here’s her press release:
Hannah Ensor, a cartoonist from Oxfordshire has been nominated for the Entrepreneur of Excellence (disability) award at The National Diversity Awards

The ceremony celebrates some of the excellent and inspiring achievements of positive role models and community organisations from across the UK. The awards aim to recognise nominees in their respective fields of diversity including age, disability, gender, race, faith, religion and sexual orientation.

Hannah Ensor lives with HMS/EDS (being far too bendy and falling apart) and PoTS (tap-dancing heart and appearing drunk without alcohol). For her, life with an uncooperative body is normal and the freedom of having a great set of wheels is simply marvellous.

Although initially trained as an Environmental Health Officer, her conditions deteriorated significantly in her mid 20’s and she was medically retired a few years later in 2010. Around this time, Hannah Ensor’s stickmen based approach to disability started as a way to communicate while unable to put a sentence together. It naturally grew into a business – communicating about disability with charm, humour, and unerring accuracy.

Her online shop www.stickmancommunications.co.uk stocks a whole range of her products, from stickers with her ‘Positive Disability Symbol’ design, to ‘differently normal’ wristbands, and Keyring Cards which help the user explain about their disability/how they are feeling/what they need effectively and with humour. From children’s books full of life and laughter – which just happen to include disability as normal, to cartoon gift books suitable for all ages which communicate about various aspects of life with disabilities, with humour and unerring accuracy.

Alongside the shop, Hannah’s blog, peppered with stickmen, works to raise understanding and acceptance of disability, not because she campaigns, but because she writes with openness and humour about her life in a way that is easy to relate to, and her enjoyment of life shines through.
Hannah also works closely with the Hypermobility Syndrome Association (for which she was appointed Patron for kids and teens in 2012) supporting others with her conditions and helping them make positive choices in managing it.

Some comments from her customers:
“Utterly inspiring and hilarious, she’s changing perspectives on disability in a fabulous way”
“I would never have put a universal disability logo on the car because of embarrassment but now I have this positive logo and I love it – I even have it on my kayak and I’m proud to show the world I’m positively different.”
“You have given me hope, thank you very much. I only saw dark days ahead of me but I think I should look at it differently. If I lose the use of my legs then there will be other experiences that I may never have tried. Thank you for being an inspiration with your attitude to life.”

The National Diversity Awards 2013 in association with Microsoft will be held at The Queens Hotel, Leeds on September 20th. Britain’s most inspirational people will come together to honour the rich tapestry of our nation, recognising individuals and groups from grass roots communities who have contributed to creating a more diverse and inclusive society.

Big Brother host Brian Dowling and CBeebies presenter Cerrie Burnell will be hosting this year’s event. The awards have also gained support from a number of celebrities including Stephen Fry, Beverley Knight and Ade Adepitan – and the Likes of Paralympic champion Jody Cundy, and Journalist Amal Fashanu were amongst last year’s attendees.

The largest diversity awards ceremony of its kind has generated great sponsors such as the co-operative Group, Sky, The Open University and Price Waterhouse Coopers.

Theresa McHenry, of Microsoft UK, said ‘The National Diversity Awards are a wonderful way to recognise the extraordinary contribution of real people to our communities. It’s a delight to be able to support this fantastic celebration of local heroes.’

Amongst last year’s winners was gay rights campaigner Peter Tatchell, who scooped up The Lifetime Achiever Award; Trade Union activist Zita Holbourne who was awarded the positive role Model for Race and The Anthony Walker foundation, a charity established following the tragic murder of its namesake in a racially motivated attack.

The National Diversity Awards received an astonishing amount of nominations for last year’s event.

Paul Sesay, Chief Executive of The National Diversity Awards said, ‘if ever there was a time to celebrate and elevate the truly staggering diversity of talent the UK has to offer– it is now’

‘I know another fantastic spectacle of role models will be delivered and recognised this year’.

Nominations are now open and close July 19th 2013 – so don’t miss out on your chance to get involved!

Shortlisted nominees will be announced shortly after this date.

To nominate Hannah Ensor please visit: www.nationaldiversityawards.co.uk
Or for a nomination form please email: emma@thediversitygroup.co.uk

International Day of Persons with Disabilities

Today is the UNs annual International Day of Persons with Disabilities.  That’s a very medical model term (although I suspect it was changed because it’s “people first language”) and I’m much more of a social model girl so I shall henceforth refer to it as a day of Disabled People.

The UN statistics state that 1 billion people worldwide have a disability or approximately 15% of the population.  I don’t know how they’ve classified disability but I have to say whilst the 1 billion figure feels right to me based on previous figures I’ve heard, I was a little surprised it was so low as 15%. I realise this makes no sense!

I wanted to write something and I wasn’t sure what.  And then I got to thinking that somewhere, right about now, there are new parents with a brand new baby, maybe even in the hospital where I was born.  We’ll assume they had a baby girl and they named her Emma, like me.  She was born today.  And one day her parents will be sat down and told by the doctors “your child has Cerebral Palsy”.  Perhaps she was born prematurely and deprived of oxygen like I was. She might end up a wheelchair user or she might end up walking with crutches.  Regardless they are now carers and she is disabled.  She’s still their baby girl, their Emma, and they love her but she’s not the what they planned for when they said as all expectant parents seem to “as long as it’s healthy”

Tonight, another family will sit down to tea together.  It’ll be Dad and his young kids sharing a pizza and laughing and joking.  None of them knowing that when Dad wakes up tomorrow he won’t be the same guy, he’ll have had a stroke while he slept.  Guess what? He’s disabled now too. Amongst other things he’s lost use of his mouth and now needs tube feeding and a communication device. He’s still Dad… but he’s different.

And there’s a young woman somewhere – rushing off to work a little bit late because on this cold morning her warm bed was just too comfortable to get out of when the alarm rang.  She’s driving, maybe a little bit faster than she should but at 18 she only just passed her test and thinks she’s invincible. But the roads are icy and her car skids.  She survives but has to have an arm amputated and her life is never the same again. But she’s still her.

You might wonder what disability has to do with you or why you should care but the fact of the matter is – we are the worlds largest minority group.  And chances are one day you or someone you love will be part it too.

I’ve always thought that I was very lucky to live in the UK and that I’m accepted and I live a brilliant life.  A lot of things could be better but we weren’t doing too badly. But things have changed here in the UK and I don’t feel as accepted. This is something Kali has written about much better than I could in her post When Did We Forget?

So what do I want on this International Day of Disabled People in 2012? I want people to realise that there is no us and them. We are all in this together because there is no magic spell or shield you can use to prevent you becoming one of us – a disabled person or as we are now more commonly know – scroungers.

I can just about cope with living in the world as it is now – although I dearly miss the community we had and the world we lived in pre coalition and scroungers. But my hope is that for baby Emma, born today and newly disabled things are different.

I hope that on 3rd December 2042 when she’s my age it’s simply just another day and she marvels that disability was ever such a different big deal of a thing that it had to have it’s own day. I have absolutely no idea how we can get to that point. But I know that by everyone working together and doing what they can we can definitely do it. Because we’re disabled. But we’re also awesome when we come together as a community.

 

 

Gold!

“And on this banner day during the Oxfordshire Crip-Olympics 2012 the Gold medal in the standing frame event is awarded to Emma Crees.

In a breathtaking performance she wows the crowds and sets a personal best of 40 minutes standing in the frame.

A well deserved gold for the talented CPer who just a year ago was a novice in the standing frame with no expectation of ever achieving greatness.

The grin on her face when she realised just what she’d managed has to be seen to be believed. A gold medal day to never be forgotten.”

And the crowd goes wild….

♥ Emma

Happy Tears

I was asked to speak at an equality event today. About the access group (AFA) I’m chair of and a bit about my own story as a disabled person.

I think it well. I didn’t write a speech, I had a few ideas but wanted to just talk off the cuff. It helped that this is I think the third time I’ve explained to people what and why AFA is (although previously I’ve only done so in informal settings). The very first idea I’d thought of when thinking it over I forgot to use.

I talked about how I don’t suffer from CP because it’s all I’ve ever known. How just because me and another hypothetical person both use chairs doesn’t meant we have the same needs. And I talked about lots of other things. I can’t remember exactly, I wish I could.

One of the things I mentioned is how failing to provide access and inclusion doesn’t just mean I miss out. I shared the story of the Major Access Fail. Through that course I’ve made some new friends. But I’ve spent so much time fighting and arguing and being upset about that I feel like those new friends haven’t met me. They’ve met upset, depressed, fighter Em whose been made to feel worthless. They’ve not had the opportunity to meet happy, having a laugh Em who gets on with things, is confident, opinionated and loves life. Me.

After I finished speaking I went to the back of the room and the organiser leaned down and whispered to me “that was brilliant” so hopefully it worked. Next there were a few more speakers then time to mingle. During the mingling time I spoke to a few people and asked them if they thought it went ok. I was a little unsure I’d hit the brief. A few interesting comments, I think I might have got some people thinking.

Someone I vaguely know came over to chat. I think it was the third or forth time we’ve met. We did the usual “hi how are you?” bit and then telling me she’d liked my speech she burst into tears.

I froze and thought “oh shit”.

What I said was “I didn’t mean to make you cry.” hopefully she missed the panicked note in my voice

Through tears she shared why. She has a young granddaughter who has CP. Ever since the diagnosis she’s been upset about all the things her granddaughter wouldn’t do. Hearing me talk about my life gave her hope that things would be ok.

She told me the tears were happy tears, happy tears.

I gave her a hug and I must admit I had to fight off happy tears of my own.

I’m not sure what I said that helped, I never expected anything like that to happen. I’m not even really sure I did help, sharing struggles like that.

But…

If I can make one person think differently about how they approach disabled people I’ve succeeded in my talk.

Reaching someone else and helping the family of a toddler have hope that a CP diagnosis isn’t the end of the world is huge. I don’t have the words to explain what that means to me.

It doesn’t negate the bad experiences I’ve had. They still hurt, they still shouldn’t have happened but will again. And in the case of major access fail its still outrageous. But being able to use that in a positive way takes away most of the sting of the memory.

It’s not OK.

But it sure as hell helps.

♥ Emma

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

I’m in the Oxford Mail!

Ever since I joined Oxford Sailability in 2006 I heard about the brilliant accessible pontoon they planned to build. Just as soon as the raised the money. I helped with several fundraising events when I could. And on Tuesday after raising £500,000 over ten years thanks to dedicated volunteers who never gave up and months of building work the finished product was officially opened.

I was interviewed by the Oxford Mail about what it means to me.

Pontoon makes it plain sailing

I’m pleased with the article but wish I’d had more notice than having a mobile thrust at me with a reporter on the other end. I may have done it more justice than!

>Burghfield Regatta 2011

>Last weekend was the Burghfield Sailing Club’s Challenger Open Meeting.  And I took part.

I sail in the Bronze class which is for people who need someone with them on the boat.  I do sail by myself on a Tuesday evening at sailability but the regattas can get a little scary with how close people get to each other and all jockeying for the best start etc.  So I don’t feel quite ready to go by myself in a competition.

As I think I’ve blogged before, I’ve previously found the competitions great fun but difficult because although they are for disabled people they’re not a great match for my own disability.  Particularly the fact that we do back to back races so you can be on the water for a couple of hours at a time.  I have a very high level of spasticity in my legs which makes it hard for me to bend and move them.  Being in the boat is really good for me because it forces me to sit in a different position and stretches them out a bit. But I can’t move them in or out of that stretch myself whilst in the boat (someone has to do it for me and that’s not possible on the water) and after a while it gets very uncomfortable, painful even and has meant I couldn’t do the back to back races. I was convinced that was a problem which was insurmountable and I’d never do very well in the regattas.  It’s part of the reason why I was so worried about going.

I use a sports seat in the boat which has proved really useful but not the complete solution.  This time round I took a little extra baclofen for a day or so before (my script is written for me to do that if I think I need it) and played with the dose so I took it shortly before I sailed.  It helped. A lot.

 For the first time ever I managed to do all three races on Friday.  Admittedly during the last one I was saying that I was hurting and told my buddy that I would need to go in soon to which she went “you’re not going in!!” and actually they shortened the course and started finishing people before I hit my breaking point.  At which point I didn’t care, I wanted to finish and hear the finishing horn sound for me as I went across the line (they sound it to signify you’ve finished racing and they’ve marked your details down).  I was a lap behind the majority of the fleet (although not the other bronze sailors) though and I did tell G that if they didn’t finish me and wanted me to do the extra lap I was done anyway.  But they did. The safety crew came and asked if I wanted to be towed in and I said yes!  I took pain meds (codeine) when we came in – partially because I was developing a headache but mostly because of the ache in my legs – I wouldn’t necessarily have taken it for just one or the other but both together and the fact I wanted to take part the next day called for the meds.

I ended that day with two Firsts and a Second for the bronze fleet and 9th overall (there were 11 sailors).  I was very tired and went to bed a couple of hours early

The second day I had a different buddy.  It started off with the traditional pre-race bacon sandwich and one of the beach crew who comes to most of the regattas came over and commented on how well I’d done the day before.  She said she’d never known me do 3 races in a day before – and as I said above I never had.  It meant a lot to me that people could see my improvement and recognised it for what it was.

I again finished all 3 of the races that day.  I’d been in pain before the last and could have dropped out (because your worst place gets discarded if more than 4 races are sailed) but I was too bloody minded and was determined to do the last race just in case it affected my standing – the first time I’d really achieved something in a regatta like that, I wasn’t going to jepordise it.

But I ended the day with firsts in each of the races and came 9th in the fleet overall.  I won the bronze fleet for the first time ever and now have a nice glass on display in my flat.  It has “Burghfield Sailing Club. Challenger Open Meeting 2011. Bronze Fleet. First. engraved on it.  And it’s mine.

Several people spoke to me and said well done and congratulations, even people I’d not really met before.  It was an amazing feeling.  And I can’t wait for the Oxford regatta to do it all over again.