A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

Disability in the media

I’m paying a second visit over at Bea Magazine this month.  I wrote about the disability issues which were raised by the news that paralympian Oscar Pistorius has been arrested on suspicion of murdering his girlfriend Reeva Steenkamp.

You can read it here:

Disability and the Reeva Steenkamp Murder

The coverage of disability in the media has always been problematic but I’m really hoping this might be the beginning of it changing. I suspect that it’s more likely that it will change the way violence against women is covered by the media than disability.  Still I hope.

Last year I was asked to speak to the local paper about my sailing group having some new equipment after fundraising for over 6 years and raising half a million pounds for it.  It was on the phone and I did tell them I was a wheelchair user because it was relevant (the equipment will mostly help wheelchair users and means I can be more independent).  I didn’t tell them that I had CP.  But in the article it said “Ms Crees who has cerebral palsy and uses a wheelchair said…”  Because that’s what defines me in their eyes.

That and another experience a few years ago where something I said was taken slightly out of context to make it appear like a terrible disability thing in a news clip mean I would be very wary talking to the press again. Basically they obviously really wanted to me to answer yes to a question and wouldn’t stop asking me varients of it.  In the end I said along the lines of  yes it seems like that to you but…”  The final news clip had me just saying “yes it seems like that.”

And I’m just me.  A regular crippled girl who writes and likes to sail.  I’m not high profile at all.  The fact that Oscar Pistorius is high profile is a big part of the reason why there are so many issues relating to disability in the coverage of Reeva Steenkamp’s death but it’s not the only reason. Crimes are committed by disabled people every day.  People are murdered everyday, sometimes by those disabled criminals or by others.  That doesn’t always hit the news. This did and brought with it issues about disability magnified to a whole new level.

I didn’t think of this until after I wrote the piece for Bea but I suspect disability is why it’s getting so much coverage.  If a regular Olympian, say, Greg Rutherford (being only he was the first to come to my mind) was accused of the same crime it would be a big deal.  But I’m not sure it would be quite as big a deal with so many people shocked and talking about it as when it’s the so called “Disabled hero”

I’m not the only blogger who has been tackling these issues.  William Peace has also written about the problem of disability role models (in which he also covers Helen Keller) over on his blog Bad Cripple.

A couple of Quick Reads

Following on from yesterday’s entry For The Love Of A Book, here is my review of two of the latest editions to the Quick Reads series.

First I read Today Everything Changes by Andy McNab. It’s a biography of parts of his childhood and when he first joined the army. Here’s the blurb from the back cover:
Abandoned as a baby, Andy McNab’s start in life was tough. He grew up in South London with foster parents, and poverty on all sides. Andy attended seven schools in as many years, disillusioned and in remedial classes. Before long his life was one of petty crime. By the age of sixteen he was in juvenile detention.

Recruited into the Army from there, it soon became clear that he had the reading age of an eleven year old. The next six months in the Army education system changed the course of his life forever.

Today Everything Changes is the inspiring story of when life changed for the better for now bestselling author Andy McNab.

I’d not read any Andy McNab books before. I’m not really sure why as I do like a thriller occasionally. I liked this book a lot and I would like to read more of his work. But more than his fiction I’d like to read more about his life and his time in The Forces. There were one or two bits in the book where he mentioned something in his past and I was like “you can’t leave it there, I need to know more than that!”

I knew nothing about the man besides the fact Andy McNab is a pen name for a man who used to be in the army and then the SAS. I’d sort of assumed his writing would be boring to me and that there wouldn’t be anything in his book apart from the tales of the army. I was wrong. He’s very definitely a good writer and obviously one who has struggled along that path. When he joined the army he couldn’t read. The day they taught him, that was the day everything changed and he started living his amazing life.

The second of the Quick Reads I read was A Sea Change by Veronica Henry. Very different to the Andy McNab this is a really good chick lit book complete with moments where you think it’s all going to go wrong and the requisite happy ending. Here’s the synopsis:
Jenna is known as The Ice Cream Girl.

She doesn’t mind the name one bit. After all, there are far worse jobs than selling ice creams by the sea. Then one hot summer’s day, everything changes and Jenna faces the most difficult decision of her life.

Craig spends as much time as he can at the beach hut in Everdene he rents with a few of his mates. It’s the perfect break from his stressful job, and he loves to surf. But one weekend he notices a girl on the beach – for all the wrong reasons.

For Jenna and Craig, it’s a chance meeting which could change their lives forever…

This provided me with some very enjoyable escapism for a Thursday morning. I loved both Jenna and Craig but we saw more of Jenna and who she was. I could really picture her – a girl life has been a bit tough on, a but shy and very alone with a very distinctive style and idea of just who she is. I’d have liked to know more of Craig’s history too. It also had a healthy dose of grittiness in it making it very realistic and not just syrupy sweet fluff like some chick lit can be.

Both of these books were brilliant and I loved them. But on balance I’d probably recommend A Sea Change more than Today Everything Changes.

For the love of a book

I love to read. This comes as no surprise to anyone who knows me or who reads this blog regularly I’m sure.

There’s just something about picking up a book and losing yourself in it. It makes me think, I learn stuff, it’s enjoyable. They make me laugh, cry and just feel. Sometimes I reach for a book as pure escapism and it also means as long as I’ve got a book or my kindle in my bag I can fill a few minutes waiting at the hairdressers or the doctors really easily and it makes the wait less annoying.

According to statistics 1 in 6 adults of working age in the UK find reading difficult or impossible. Quick Reads is a charity dedicated to improving literacy. They aim to show that books and reading can be for everyone. Each year they commission big name authors to write short books that are specifically designed to be easy to read. They are the same as mainstream books in every respect but are simply shorter and easier to tackle for adults who are less confident in their reading skills. The books are then sold through major retailers, online booksellers and are loaned from libraries. They are also very low priced – usually £1 – which makes them even more accessible.

I can’t imagine not being able to read. I just can’t.

Books are such a huge part of my life and so is writing. I don’t know what it would be without it. But the thing is the ability to read is about so much more that books. It’s about being able to read directions to places you need to go. How much and how often to take the paracetamol you just picked up. instructions for your new oven or even how long to cook that pizza.

If you can’t read and you get an official letter what do you do about it? At CAB often I see clients that need to check what a letter means or what to do with a form they’ve been sent. Some of the time it’s because it wasn’t written in plain English and they need jargon translating. We’ve all had letters like that where we think “I know what it says but I don’t know what it means”. Letters from the DWP are a frequent example. But often people who come in with a letter only have a vague idea what it’s about because of their literacy level or haven’t been able to read it at all.

Letters about benefits are very distinctive. They come in a brown envelope and the typeface peeking through the window of it is this one particular one that to me and I’m sure many others screams DWP. And “Doom!” to some. I know a letter is about benefits before I open it and as I’m currently awaiting an ESA decision I appropriate all brown envelopes with some apprehension and ones obviously from the DWP with more.

But I can read. I can open that letter and know what it says with as little or as much delay as I choose. Many people can’t. I can’t imagine what the fear of that letter would be like it if was multiplied by the time it took to find a friend or relative who could read it or to get to a CAB or similar that was able to help. I know an inability to read fluently has meant deadlines and appointments missed to some people – and potentially worse.

So when Quick Reads told me about their six new books for 2013 and asked if I’d like copies and to help promote their literacy work I of course said yes! I’d read a few before and knew they were very enjoyable and was intrigued to see what they had this year.

The six books are:
A Dreadful Murder by Minette Walters
A Sea Change by Veronica Henry
Doctor Who – The Silurian Gift by Mike Tucker
Love is Blind by Kathy Lette
Today Everything Changes by Andy McNab
Wrong Time, Wrong Place by Simon Kernick

I’ve been reading some of the books over the last few days and I’ll be posted a review or two later today.

Tell A Feminist Thank You and Disability Mentors

Since this afternoon I keep seeing tweets pop up with #tellafeministthankyou (hashtag “tell a feminist thank you” for those who find those hard to read).

I got to thinking.  It would be good to have a similar thing for people who campaign on disability issues.  But what would you call it?

Feminism is generally considered to be a good thing and to have made amazing strides forward in rights for women both in this country and others.  The suffragette movement and the fact women in the UK can vote being just one example.  It’s the one that comes to mind because I just read The Children’s Book by AS Byatt and the votes for women movement plays a role in the book.

And I suspect that a lot of what has happened to improved disability rights and everything around it has a basis in the feminist movement.  Once you can get someone to change their mind on something it’s often easier to get them to begin to shift slightly on a different but related issue such as disability rights in my opinion.  The two issues are very different but they compliment each other and one can lay the groundwork for the other.  Although, obviously there are also times when to link the two issues together would be inappropriate just as there would be with any other “ism”

But going to the hashtag you could never have “tell an ableist thank you” (or disableist depending on your term of preference, mine I think is moving more towards ableism at the moment) because ableism is a bad thing and rightly so.

There are so many people who have been my disability mentors along this journey.  Not all of them have disabilities themselves but most of them do.   And one or two that most of what I took away from them was how not to be. Some I have thanked.  Many I have not and some I doubt I’ll ever get the chance too.

I considered sharing names and linking to blogs of some of the awesome people who’ve been that for me at different stages at my life.  But the fact of the matter is I could never list them all and I’d hate to miss someone off.

Most of them are people I either met through the internet or who I only know online.  I grew up knowing many others with CP and a few with other disabilities we wheeled or walked our path growing up disabled together but I’m not sure mentor is the term I’d use for those people.  Possibly because for me the path to true acceptance and being happy in my own skin didn’t come until I was 17 or so.

If you’ve played a role – any role – in mentoring me or in the fight over the years for the equal treatment and rights that I and others deserve as both a disabled person and as a women then Thank You.

That’s something I don’t think we say enough.

Talking, Ten Years Later

It’s that time of the month again when I mosey on over to Bea Magazine and share what I’m thinking, feeling, doing, whatever with them.

I don’t like February. There have been a lot of tough times in previous ones and there are several anniversaries now in a short time. It’s been long enough now that most of their sting has gone but still it lurks. This year I remembered the dates but it wasn’t until several days into the month when I wondered why I felt down and put it together that its often a time I struggle.

Yesterday marked 10 years since I was first diagnosed with depression. It is what it is. I can’t change it and I’m not sure I would if I could.

I’ve written a bit about that over on Bea in Talking, Ten Years Later.

A Dream Is A Wish Your Heart Makes…

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.