Bored

I’m bored.
I’m bored of being seen only as the one in the wheelchair.
I’m bored of my disability being all people remember about me
I’m bored of being defined by my CP.
I’m bored of complete strangers demanding to know how long I’ve been in a wheelchair
Of them asking “what happened?” And then when that doesn’t get the answer they want demanding to know “what’s wrong with you?
I’m bored of fighting.
Of having my concerns ignored
Of asking for something and having it decided for me that something else will do.
I’m bored of saying that I need something and explaining why. Then having that explanation ignored because they know better and my anxiety diagnosis cited as the reason instead.
I’m bored of asking about access because I’m worried and being told I need to have more trust.
I’m bored of broken promises
Assumptions
People forgetting
Not thinking
I’m bored of going round the back
By the bins
Of waiting
Of sitting hoping while staff hunt for lost keys
I’m bored of being a scrounger
Ignored
Hated
I’m bored of being seen as a deserving case
Whilst others fight.
I’m bored of being lesser.
But then
I wouldn’t want to be anything more
Than what
I am
Because I’m me
But most of all
I’m bored of that
not being
What people see.

this post is meant to highlight some of the difficulties I face as a disabled person, there relentlessness and how it can make me feel. It’s my submission for Blogging Against Disablism Day 2013

Rekindled

I’m reading a good book at the moment.  I hope to finish it tonight and I’ll review it for my blog in the next few days most likely.  When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
Albert Schweitzer

I’ve had a tough year I think it’s fair to say.  And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.

I love quotes as anyone who has read my blog for a while will probably realise.  This resonnated with me a lot.

I’ve spent time this year feeling as though I was worthless.  As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence.  It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.

Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.

My family.  My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.

The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).

The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh.  Those who lurk in the background.  The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.

Those who do things I would never expect.  On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair.  I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.

My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past  “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.

10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.

I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough.  My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.

Thank you.

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

>Unreasonable Adjustments

>I wrote a while ago about entering some creative writing competitions.  I heard yesterday that I didn’t win the last of them.  Which I’m totally fine with, I didn’t expect that.  I did pay extra for a critique and whilst a little hard to read it is very useful.  I do agree with a lot of what the critique says although this remains a piece I am proud of.  I thought I would share it below.  As yet I haven’t made any changes. Feedback is welcome

Unreasonable Adjustments
“You have the run of my home”  said Lady Howlett ending her welcoming speech and sweeping gracefully from the room.
The run of this house? If only.  Claire thought.
The idea of spending a night in a haunted house and winning £1,000,000 for doing so had seemed a great one.  An easy way to make a lot of money and probably have a laugh as she did so.  The night had barely begun and already it seemed there was a problem.
They’d known when she applied that she was a wheelchair user.  She’d been assured that there was access.  Even when she’d asked pointed questions about ramps and whether she’d be able to get her wheelchair into the disabled loo, they’d stuck to their vow that they could accommodate her. 
All she needed to worry about, they told her, was whether she really could spend the night in a certified haunted house.  The fact that they made such a big deal of it being “certified” had amused her.  How did they get it certified?  Claire didn’t believe in ghosts and she’d hoped to prove they didn’t exist.  The people who certified it as haunted weren’t trustworthy.  It wasn’t as if the council had rules and regulations (no less than two sightings a week, for a year) and an official haunted house inspector who had to sign off on these things.  She’d thought it would be easy.
Claire hadn’t been surprised that the access wasn’t exactly as she expected.  It rarely was.  However, this was something she hadn’t encountered before – surprising given she’d been in the chair for 42 years and thought she’d seen it all.
The gravel entrance hadn’t phased her, nor had the steps.  Ramped access is often around the back, by the bins, or otherwise out of sight.  So she’d waited. 
Angelo had returned about half an hour later and with the help of another silently hulking man had carried her up the steps into the house.  She’d protested that a lot as there’s nothing worse then being in somewhere you can’t get out of and knowing you’re trapped.  Her words had been ignored and she’d been taken against her will into the house.
There she was, apparently, she had the run of the house, but in truth, she probably didn’t.  It looked as though she wouldn’t be able to get out of the room she was in without help.  Everyone else in the room was milling around looking at the windows and heading towards the door.  They were all ignoring everyone else as well.  This was going to be a long evening.  A boring evening it seemed.  Just one hour later Claire realised just how wrong she’d been.
****
First, she’d decided to have a good look around the room they were in.  It was a big room with lots of art on the walls so that took a good 15 minutes.  She was one of two people left in the room at that time – the other person was steadfastly ignoring her so she simply did the same.  That was unlike her; she was an extrovert and found it very hard to shut up.  Something told her however that this wasn’t the place to go making friends and being nice, it wouldn’t go down very well with the other contestants.  Getting out of that room proved easier than she expected.  The step she thought she’d seen turned out to be nothing.  Strange, but she accepted it.  It wouldn’t be until later that she realised just how strange that was.
Then Claire had figured that seeing as she was going to be there all night she’d go find out where the loo is.  It’s always worth doing these things ahead of time.  Particularly when you need a disabled loo – don’t want to be discovering that it’s locked and no one knows where the key is when you’re absolutely bursting for a wee. 
She didn’t expect that this was the sort of place where it would people would be having sex in it if it wasn’t locked (why was that, was there some sort of weird places to have sex scorecard doing the rounds? 50 points for a disabled loo!) but you never know.
That was the first sign that the steps weren’t the only problem she was to face that day.  She never found the loo. 
She spent thirty minutes looking for it.  To be fair, it wouldn’t have taken that long to search all the places she did but she kept getting distracted.  Firstly, by all the art and other things she spotted.  Lady Howlett had some really unusual – and unexpected – items in her home.  And secondly by a really strange feeling.  It was creepy – a cold sort of tickly sensation crawling up her back and making her hair stand on end.  She shook it off – she had to, she didn’t believe in ghosts!  There would be an explanation she knew, she just needed to find it.  But first to find the loo.
At the end of the thirty minutes, she came across Angelo standing silently at attention in the hall.  Claire wasn’t sure why he was stood in that particular spot in front of a blank piece of wall (she was later to realise, the only blank piece of wall she saw in the entire house).  Wandering over she spoke to him
“Hi Angelo.  It is Angelo, isn’t it?”  He didn’t answer, didn’t even blink.  Unnerved she continued “Um, well, anyway.  I was wondering if you could tell me where the disabled loo is?  I’ve been looking for a while and I’ve been everywhere I can see.  But I can’t find it.”
Angelo shrugged as though he didn’t care.  It was a strange sight and it infuriated Claire.
“Maybe you could go find out where it is if you don’t know?” she asked, she’d experienced this lack of knowledge from staff members before – too many times to count.  “Only I know there is one because I asked before I came.  The person I spoke to told me there was one and I’d be fine.”
Angelo stared at her for a full minute.  Just when Claire was beginning to think this was useless he suddenly moved his left arm and pointed.  He didn’t say a word and after waiting briefly to see if there was more to come Claire simply turned and started going in the direction he pointed. 
She was very confused and more than a little angry not least because he had pointed back the way she came where there definitely wasn’t a disabled loo.  It seemed she had no choice but to do that. 
A few minutes later she was beginning to calm down and she suddenly realised that she’d come further than she had before.  In fact there hadn’t been enough building to go this far before.
Claire didn’t believe in ghosts.  She really didn’t.  But she was beginning to get a little bit freaked out by all of this.
Suddenly a little bit ahead she spotted that familiar sign that signifies disabled parking and disabled loos worldwide.  The little guy in the wheelchair with his arms out in front like a zombie.  She was pleased she’d started looking for the loo when she had because now she really was heading towards the desperate stage of things.
Opening the door, Claire couldn’t see any of the usual items you’d expect in a disabled loo.  No bins or grab rails.  And, no loo.  She figured that maybe it was a bit further on so she went in.  The door slammed behind her ominously. 
Wheeling back and then back further Claire was astounded by how far she’d come.  She’d been able to see that this was a big room but hadn’t expected something as big as this.
All of a sudden, Claire felt a weird buzzing sensation surround her.  Her vision went fuzzy with lines all across it.  That lasted about two, three minutes (although it felt a lot longer).  Her ears will filled with a loud ringing sound something like church bells.  The result was that Claire was very disorientated.  As quickly as it had started, the sensation finished.  Claire shook her head to clear the residual feeling.  And realised that somehow, unexpectedly, she was back outside the house on the gravel driveway where this had all started.
Screw scared of the ghosts, Claire was scared by what had just happened.  And more than a little pissed off.  She shouted and shouted for help, shouting herself hoarse in the process.  But no one came.
Claire waited all night.  It wasn’t until just after dawn that anyone came.  Angelo turned up at that point along with his hulking companion.  They carried her, protesting, back up the steps into the house and deposited her in front of Lady Howlett.
“Well, Claire, yet another failure to spend the night in my house.  I am disappointed.  No million for you.”
She explained to Lady Howlett that this wasn’t fair, she hadn’t wanted to leave the house, she’d just wanted to go for a wee.  
Lady Howlett made no response to Claire.  She just turned to the two men waiting and said
“Get this waste of space out of my sight.”
They picked her up and carried her from the room once more.
****
Lady Howlett had expected that to be the last she heard from Claire.  After all, she’d never had anybody come back at her for failing to win the million before.  She’d also never had a mouthy, independent wheelchair user as one of her contestants before.
Claire, however, believed in complaining.  Spending most of her life in a wheelchair had taught her that you often were treated badly for being different and that you were just expected to “put up and shut up.”  The way she’d been treated by Lady Howlett and her staff was appalling.  If she didn’t do something about it, some other wheelchair user was going to have the same horrific experience at some point in the future.
First, she’d tried writing a letter, and then a second when the first was ignored.  Unfortunately, that didn’t get a reply either.  Unfortunately for Lady Howlett, that is.
Claire’s next step had been to speak to the Equality and Human Rights Commission.  They’d been shocked to here of what had happened and had helped her to put in a case for disability discrimination.
Seven months after that, the case came to court.  Neither Lady Howlett nor Angelo appeared to dispute the charges.  That resulted in Claire automatically winning her case, which the tribunal described as “one of the worst cases of disability discrimination in years”
Claire learned that it really is worth making a stand when you need to.  She won £2.1 Million pounds for the discrimination and because she lost the chance to win the original £1 Million prize. 
As for Lady Howlett?  She never held another of her “Haunted House Nights” nor was she ever heard from again.  Claire liked to think that was because she’d learned the lesson of treating people with respect, and that you should, always, always make reasonable adjustments to accommodate people who are disabled.  Truthfully, however, she’ll never know.