Nothing About Us Without Us

I’m trying to work my way through a series of disability specific terms and especially some disability specific concepts and define them for my blog. A sort of glossary of disability according to Emma if you will.

I’ve also been asked to contribute monthly to Bea Magazine. My first piece went up there today and happily the subject I wanted to write about for them is also something I would have written about in my disability glossary. (Although I hadn’t actually planned for it to me the next entry in my glossary). I’m sure all of my readers are now breathing a sigh of relief that they don’t have to read two lots of my drivel on the subject.

My article is Nothing About Me Without Me.

The article contains a much better explanation with detailed examples etc. And people seem to have liked it. Or at least a couple of people liked the Facebook post of the link, my Dad said it was interested and Mum said it was good (but they are obv biased).

But basically nothing about me without me (or nothing about us without us) is a very commonly used disability rights term to declare the fact that no decision should be made for or about a disabled person without their input. Obviously for different people and for different levels of disability the way decisions are made will vary. And some people will never be able to make a complex decision such as where they live. But they can still have a say. Even if its just whether they want their bedroom painted red or blue. And even if they can’t actually speak.

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.

 

 

Random Bullet Points of Life

  • I’m getting over a nasty cold but it didn’t go to my chest and I didn’t need antibiotics.  Lots of win there.
  • Depression and low mood have been a big issue in the last few days.  I think not getting out and feeling ill have had a lot to do with that.
  • I’m in the middle of the IB to ESA transfer and it’s horrific.  Mum and I finished the form today and she asked if I wanted to put anything in the “any other info box” and all I could say was “i’m just done with it.”
  • I really did want to write in that box “yes I have lots of disabilities and problems but I’m fine, damnit.”
  • Bizarrely other than a hysterical crying fit when I heard my transfer was starting I’ve gotten through the forms without crying despite finding them really hard and upsetting.
  • There’s a possibility some of the stuff I’ve been doing is making a difference for more than just me
  • I bought a new phone – a Samsung Galaxy Ace Plus and I absolutely love it.  But I also appear to have lost it and am getting in a panic that it’s gone.
  • I dropped my iPad and bullseyed the screen earlier.  Bizarrely it’s still working but I’ve an appt at the genius bar later in the week.
  • Tonights technology woes felt like much more than I could handle right now – the straw that broke the cripple’s back!
  • I will have some writing in a few places soon
  • I’ve been listening to and very much enjoying some of the Narnia audiobooks.
  • I’m not sure how well I’m coping right now.
  • I’m surrounded by awesome people including a friend who called in her way to work one of the days I was poorly simply because she knew I needed a hug.

Simon and Schuster Autumn Blogger Event

I went to a blogger event hosted by Simon and Schuster yesterday. It was a lot of fun!

They had an author panel with four different authors (Ali Harris, Robert Ryan, Dean Crawford and Wendy Wallace) for an hour or so and I got a couple of questions answered.

I asked about the best and worst things about being a writer and how to keep motivated on bad days. It was interesting to hear their answers and also with the motivation one to see some similarities with how I try to find motivation – particularly the going to write somewhere out of the house one that I use at times. The stories about hearing they’d got publishing deals were also fun and the comments on dealing with bad reviews. In a way I wished it could be recorded to it was there to listen to again so I could remember all the bits I thought worth remembering or that I’d have to tell my friends but now I’m going “there was something about…” somewhat forgetfully.

After that we went into another room where there were masses of books and wine and snacks and people mingled and chatted and got books signed. You could take as many books as you wanted and I may have been a bit like a kid in a sweet shop.  Honestly when I got back to Waterloo and met my mate for a drink she was fishing in the bag so she could look at them she commented that the books “just kept kept coming.”  I wasn’t sure until we were sat in Starbucks with the entire table covered in books exactly what I’d got or how many books (14) – I just lost track with all the “oh! look! free books! I want!)

I had a chance to speak to all of the authors – some more than others and get books signed.  I also talked to some Simon and Schuster staff (mostly about books but also about wheelchair basketball with one) and other bloggers.  I tried to ask all the bloggers I spoke to what there blog was but to be honest I’m not sure how many I remembered today.  I clearly need to improve my networking skills.  Certainly I’d only heard of one of them (Novelicious) before meeting them.  I did find a few on Twitter this morning to follow though.

Here’s what I got:

The books I got at the event - listed below.

 

The perks of being a wallflower by Stephen Chbosky – I’d actually been looking at that last weekend in Waterstones when I went to the NaNoWriMo meet up as I said to mum that’s one time where my being in an indecisive mood paid off.  My mum has declared she will be borrowing this.

Three books by Dean Crawford – Apocalypse, Immortal and Covernent.  He was one of the authors there and signed one of them for me.  Those are thrillers featuring the same character and I think from what I heard they could be intriguing.  I do like a thriller now and then.

Dead Mans Land by  Robert Ryan.  He was another of the authors there and this is signed too.  Before the event I was emailed a thing with a bit about each of the authors and their books.  I really wasn’t sure about Dead Mans Land when I read that and thought it probably wasn’t my sort of thing.  I have to say listening to him introduce it and talk about how it came about and being a writer changed my mind.  By the time he finished I was like I have to read this book.  The friend I met after took one of the books I picked up (not on this list because I can’t remember what it is – I’ll read it at some point and find out then) and would have taken this one with her too if I’d have let her!

Beautiful Disaster by Jamie McGuire – I think this might turn out to be a bit of a Jackie Collins-esque chicklit.  The cover appealed to me.  This probably shows how shallow I really am but I don’t care.

The Painted Bridge by Wendy Wallace – this is signed (she was the third of the authors there).  It’s not strictly speaking my sort of book but based on what was said about it there are one or two points in it the idea of which intrigued me and I wanted to get at least one book from each of the authors there.

First Last Kiss by Ali Harris (signed with a lovely message) – She was the only one of the authors there that I’d heard of before.  I reviewed her first book Miracle on Regent Street this time last year and really enjoyed it.  I’m particularly excited by this book and have been ever since I first started hearing about it on twitter a few months ago.  And now I get to read it before it’s even out. Yay.  This is on the top of reading list at the moment I think. (it’s this or Perks of Being a Wallflower simply because I know Mum wants her hands on that soon. This is winning).

The Lawgiver by Herman Wouk  This sounded intriguing.  A little hard to classify I suspect and I’m not sure what I’ll make of it.  I wasn’t sure whether to take it and ummed and ahhed a bit.  But they said I could have as many books as I wanted and it’s little and there was room in the bag…

Fever by Mary Beth Keane This is historical fiction which isn’t always something I’ve gotten on with.  Someitmes I enjoy it and others (like Phillipa Gregory) just annoy the hell out of me and I put them to one side. But lately I’ve been talking books a lot with a friend who reads a lot of historical fiction and made it sound good so I thought I’d pick this up and give the genre another go.

Black Roses by Jane Thynne.  This looks brilliant.  Based on real events in Germany of the 1930s (I’ve always been interested in that period of time ever since I studied it at school).  It looks and reads like it should be chicklit but with a touch of mystery and suspense to it.

Silenced by Kristina Ohlsson – on the cover it says “for fans of The Killing”.  I’ve not seen that but my entire family loved The Bridge so I couldn’t resist picking it up.  My Dad and my brother both like reading this sort of books too and as I read the back I thought “we’re going to be passing this around the family if it’s as good as it seems it might be.”

With All My Love by Patricia Scanlan – I read loads of her books when I was in my late teens and early twenties but haven’t read any for absolutely ages.  I’m looking forward to giving her books another try.

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.

This is the story of…

We played Consequences at the NaNoWriMo kick off meet up today. It was pretty funny and I said I’d record them for posterity. I figured my blog was a better place for them than the forum as things get lost on there!

This is the story of how Bugs Bunny met Goldilocks on Red Dwarf. He said “I’d kill for a slice of that pie.” She said “Hush you!” And they got lost in the forest and found the witches house.

This is the story of how Reginald Harris met Marilyn Monroe at the circus. He said “Have you ever seen Mamma Mia?” She said “How RUDE!” And that’s why they don’t have a dog any more.

This is the story of how Lord Grantham met Queen Victoria on Platform 9 3/4. He said “make my day punk.” She said “that’s what?” So they went ice skating in George Square.

This is the story of how David Cameron met Miss Piggy in the GOL section of the phone book. He said “give me your toes, baby!” She said “that reminds me of the time I ate an entire buffalo.” And that’s why spaghetti is now illegal in France.

This is the story of how Jean-Paul Gaultier met Jordan in a booth of the London Eye. He said “I only speak French.” She said “oh ah just a little bit.” Then they went to the pet shop and bought goldfish.

This is the story of how Dangermouse met Shania Twain in Mornington Crescent. He said “don’t move! There’s a banana here somewhere and I’ll find it if it kills me.” She said “I’ve always wanted to learn how to whistle. They lived happily ever after.

This is the story of how Mickey Mouse met Eva Green on Jupiter. He said “Gold is my favourite thing, precioussss.” She said “Pandas are not lobsters.” So they had no choice but to eat hot dogs until they felt sick.

This is the story of how Mark Twain met Elizabeth Bennett in Churchill’s bunker. He said “do you like vanilla ice cream?” She said “I am going to call the police!” And then they jumped off a cliff.

This is the story of how Winston Churchill met Mary Poppins at the £2 book store. He said “can I buy a box of arsenic?” She said “I like old movies.” And they all won NaNoWriMo.

This is the story of how Gollum met Margaret Thatcher on the London Eye. He said “that’s the way the cookie crumbles, my dear.” She said “sometimes I think I can hear trees talk.” Aliens blew up the building they were in.

This is the story of how The German met Alice (from Wonderland) at The Jam Factory. He said “I’ve got a brand new combine harvester.” She said “I prefer golf clubs.” And then Frank ate bacon.

This is the story of how Ash Ketchum met Isabella Valentine on Betelguise 4. He said “your shoes look fantastic.” She said “ok, I’ll go for drinks with you.” Then they did vodka shots and ate cake.

This is the story of how Jonas met Doris at the Eiffel Tower. He said “I love jam”. She said “I think they’re writing novels.” And they ate fish and chips in a yellow submarine,

Wheelchair Etiquette

Every so often I see articles doing the rounds online about dos and don’ts for dealing with us wheelchair users.  I don’t agree with a lot of things those include.  I was thinking about writing my own version but basically it comes down to

Be aware of the persons preferrence – a lot of these articles say you should get down on wheelchair height if at all possible when talking to a wheelie.  I prefer that people remain standing – or sitting whatever they were doing.  I’m not a fan of the crouched down beside me making a special effort thing.  I’m not just saying that because of the seat riser in my powerchair I’ve always thought that.

And don’t touch my damn chair.

Don’t lean on it.

Don’t move it when I’m not in it unless I ask you too

Don’t sit in it when I’m not in it.

Don’t grab my handles and take over pushing

Don’t grab my handles and stop me because you want to talk to me (which is what someone did tonight and is why I’m finally writing this post)

Realise that there are always exceptions to these rules but I’m not always going to tell you in advance what they are.  I don’t always know what they are! One such example is in this entry and still makes me giggle to remember four years later.

I’m wondering if this is a topic I need to come back to at a later date and in more detail – what do people think?

The need to be grateful

I went shopping in a brand new craft shop last week.  It had one of those lifts where just the platform moves and you have to hold the button down the whole time.  It was also one where you have to open the door yourself. And on the ground floor it had a ramp up to it.  I got another customer to open the door for me so I could go in it and then backed my chair into the door so I could open it at the top

And when I came down I grabbed a member of staff and asked for help.  She offered to come down in it with me which I took her up on.  She asked what I’d found and if I do a lot of crafts.  Commented how stupid needing to open the door to the lift was. General small talk, kinda jokey and just nice.

When I made it to the check out the same staff member was there and joked “fancy seeing you here” I replied “yeah such a surprise” and she told her colleague that we’d bonded in the lift.  That staff member went off while I was paying and commenting that “she’ll hate me for doing this, they get put up in the staff room” her colleague jotted down that person’s name on one of their feedback slips which tells you how to go online and give feedback.

I didn’t know what to make of that. I’m pretty sure a big part of this is one of those “my issue” things but it still made me a bit unsure.

Because it is very nice to find help that’s needed in a shop quickly and easily.  And more so when the person is happy to do so and makes it obvious without being over the top.

But at the same time it was just help with the lift.  It wasn’t anything above and beyond really.  If you think about it in terms of the now defunct Disability Discrimination Act it’s a reasonable adjustment and no big deal (I have no idea really how the replacement Equality Act deals with these).

I believe in complaining – and I believe in acknowledging good service although I know this is something I could do with doing more.  By giving me the slip with the staff members name though I felt like it was being made out to be something unusual that they didn’t have to do and that I needed to be grateful for. As though that second worker, the one at the checkout wouldn’t have done what the first one did and was surprised by it.

Whilst I’m sure that wasn’t what they meant I didn’t like it.  I thanked the staff member who helped me and the one who gave me the card. I always do.  But helping people is a part of their job. It’s not an act of charity designed to make the staff feel good.

The card with her name is still in my bag. She gave me good service and I think I’ll send it off (not least because it enters you in a prize draw).  But I hope next time I go there I don’t encounter the “bonus points” attitude.  Even if it wasn’t intended.

Readathon October 2012

This is my third readathon.  After my first one I thought that whilst I enjoyed dedicating a lot of time on one day to reading I wasn’t sure I’d take part in an actual readathon again.  Clearly I was wrong.  I’ll come back to this post a few times throughout the day and edit in what I’m reading and updates and the like.

So far:

First I read Heather Leaves School by Elinor M Brent Dyer.  That’s one of the La Rochelle books and is new to me.  I grew up on her Chalet School ones and loved them (still do!) but these are much better in my opinion.  I only have two of them left to read – Seven Scamps and Janie of La Rochelle (yes I am reading them out of order as I can find them on ebay and the like). Brilliant books.  Really “nice” feeling without being over the top and still manage to be engaging and relevant today despite first being published/written in the 1920s.  I do love a nice bit of Girls Own reading every now and again.  That had 151 pages.

Then I reached for a Babysitter’s Club book – Mary Anne and The Memory Garden by some ghost writer pretending to be Ann M Martin.  Those are totally my guilty pleasure books that I started reading again last year (another occasional ebay buy).  I was really into them as a child but must admit when I went back last year I was horrified and was all “I would never let a child read this drivel.”  But it’s one of those so good its bad things and I enjoy them.  Plus this one is one I’d not read before and actually it handled a very sensitive subject (death) very well. 153 pages (big text!)

Update 19:26

I feel all discouraged and like I’ve made no more progress reading.  Which is completely ridiculous and I seem to remember happening back during the last readathon too (it also might have been a part of the reason I thought I wouldn’t do it again last October).

My goal for the readathon was to read Heather Leaves School (which I have) at least one Babysitters Club book (which I have) and one from the 1001 books to read before you die list.  Because I use that list for ideas and I feel like it’s forever since I last finished a book on there.  Although the truth is I haven’t been finishing books properly for ages until a few weeks ago when I seemed to get back into reading again.

So I picked up The Trial by Franz Kafka which I started reading ages ago and was getting into but then never touched for weeks.  Read that for five minutes and was debating going back to the beginning and restarting.  Got interrupted by the phone (after maybe 5 pages). Put that down.

Picked up The Scarlet Letter which is another one I’ve been trying to read (although that’s been a bit of a struggle it’s so short I don’t want to give up completely on it).  I read that for half an hour lying on my bed.  According to my Kindle I read 15 pages but I’m really not convinced by that as it seems to think several screens = one page. Anyway the urge to be properly snuggled under my duvet for warmth and a nap won out and I dozed on and off for an hour and a half.

Right now I’m having an internet break and then I’m gonna watch NCIS.  I’ll be back to reading later – and maybe back with my old friends the Babysitter’s Club once again.

I’m feeling more positive about the readathon after reading the comment left on here by Alita. It’s much appreciated.

Update 21:04

I’m reading again.  a BSC mystery now.  And I’m totally blown away by all the comments and tweets.  I’ll check out some of your blogs later.  Thanks guys xx

Update 23:58

I finished that BSC mystery the name of which escapes me at the moment… it’s in the other room and I really can’t be bothered to go and get it.  It was quite a fun read.  Not too much of it was in brackets considering it was ghost written by Ellen Miles. I was surprised by that. I do wonder who much experience Ann and the ghost writers had with actual 13 year olds though because seriously some of the stuff they do or try to do is completely ridiculous.  But perhaps I’m missing the point. 148 pages in that.

I think for the next readathon I should probably pick one long book to focus on.  It was something I considered for this one but decided against.

Total time spent reading: 3 hours 45 minutes

Total pages 472