The Disability Blog Carnival

Just quickly because there was a question in my comments:

The disability blog carnival is technically still running. However there really haven’t been any submissions (1 since I took over in January) so it didn’t happen in February.

I do have a pile of links I found and plan to post them soon but the past week got away from me and I didn’t have the capacity. I’m keen to keep this going if possible.

Submissions via email to ejcrees@gmail.com or twitter @funkyfairy22

You Know You’ve Got CP When…

…You go somewhere you’ve been literally hundreds of times over the years and discover they’ve made what you’re pretty convinced they thought were cosmetic changes (and possibly for safety) and in the process have screwed up their access.

***

…you get to listen to five minutes of someone else’s mobile phone conversation. Because apparently the new place to have private conversations on your phone is the disabled loo. The look on their face when they realised they’d kept a wheelchair user waiting and that I’d heard most of her conversation was priceless.

***

…you ask someone about access for something they’re planning and also double check it yourself just to be on the safe side.

You Know You’re A Book Blogger When…

It’s 9pm Wednesday night. You’re going away for the weekend first thing Friday morning. And Thursday will be busy.

And whilst you have started getting ready all you’ve actually done is sort out your reading material. But just to be sure you’re still hunting online in case there’s anything better.

What? You mean most people pack clothes first? What’s the point of that? 😉

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

Geek Girl by Holly Smale

I received a free copy of Geek Girl by Holly Smale for review from the publisher.  As always my reviews are my thoughts and opinions and are not influenced by the fact I was asked to write them. They are however an attempt to be fair.

“My name is Harriet Manners, and I am a geek.”

Harriet Manners knows that a cat has 32 muscles in each ear, a “jiffy” lasts 1/100th of a second, and the average person laughs 15 times per day. She knows that bats always turn left when exiting a cave and that peanuts are one of the ingredients of dynamite.

But she doesn’t know why nobody at school seems to like her.

So when Harriet is spotted by a top model agent, she grabs the chance to reinvent herself. Even if it means stealing her best friend’s dream, incurring the wrath of her arch enemy Alexa, and repeatedly humiliating herself in front of impossibly handsome model Nick. Even if it means lying to the people she loves.

Veering from one couture disaster to the next with the help of her overly enthusiastic father and her uber-geeky stalker, Toby, Harriet begins to realise that the world of fashion doesn’t seem to like her any more than the real world did.

As her old life starts to fall apart, will Harriet be able to transform herself before she ruins everything?

This book is YA.  I seem to be on something of a YA kick at the moment for no particularly reason other than this is how it’s working out.  YA has always been a “now and again” genre for me but this year it’s a bit more of one of my staples. I’m enjoying that.

I’d heard a lot of very good things about Geek Girl; there seems to be a lot of buzz about it on twitter and in book blogging circles.  It definitely lived up to it’s hype.

I loved Harriet and I loved both of her parents too.  I’m proud to be a bit of a geek myself (although I am definitely not at Harriet’s level – I’m good at random facts and interested in strange things but not like she is!) and I could see a lot of myself when I was younger in her. To start with her crazy Dad was where it was at for me and Annabel her stepmum was the clueless one who was boring. But then her true colours came to light as the book progressed and I came to love her too, probably more than Harriet’s dad.

I could relate a lot with Harriet’s desire to change herself and become something she’s not. Even now at 31 I have times when I feel like I’m not good enough and need to be more.  Thankfully I’ve gotten to the point where that doesn’t happen often any more and I’ve learnt that if others don’t like me that’s their problem not mine..  For a while in the book I was beginning to think I’d come away disappointed with the message in the book but it proved me wrong and although Harriet’s true to life journey is painful at times alls well that ends well as they said.

This is one of those books I feel like I can’t recommend highly enough.  If I was to describe my thoughts as I finished the book in just three words it would be these three: “I Want More.”  And luckily for me rumour has it Holly Smale is already at work on the sequel.

edit: 20th September 2013. The hoped for sequel is coming out later this week. Click here to read my review of Model Misfit by Holly Smale

Star Trek: The Next Generation – The Stuff of Dreams by James Swallow

I was lucky enough to get an advance copy of Star Trek: The Next Generation: The Stuff of Dreams by James Swallow.  It’s a new ebook only Star Trek novella of roughly 100 pages and it’s coming out on March 25th.

The Enterprise-E arrives in unclaimed space for a rendezvous with the Starfleet science vessel Newton. Jean-Luc Picard and his crew have been ordered to assist the Newton with the final phase of its current mission—a mission that brings Picard face to face with something he never thought he would see again: the phenomenon known as the Nexus. Less than twelve years after it left the Alpha Quadrant, the Nexus ribbon has now returned. Tasked to track and study the phenomenon as it re-entered the galaxy, the specialist science team on the Newton discovered that the orbital path of the Nexus has been radically altered by the actions of the rogue El-Aurian Tolian Soren—taking it deep into the territory of The Holy Order of the Kinshaya, one of the key members of the Typhon Pact. Starfleet Command is unwilling to allow the Kinshaya—and by extension, the Typhon Pact—free access to what is essentially a gateway to anywhere and anywhen, as a single operative could use the Nexus to change the course of galactic history….

I freaking love Star Trek.  Love, love, love Star Trek. Especially The Next Generation (in fact I just created a Star Trek category for my blog and was like “how did I not have one already?!”).  And I love reviewing books.  So as my facebook status said on Friday night getting this was a bit like I’d died and gone to Book Blogger Heaven.

Book Blogger Heaven I imagine to be this amazingly wheelchair friendly place filled with unlimited copies all the books there ever have been and ever will be that are worth reading and where I never ever have to hear someone mention Twilight or 50 Shades of Grey and describe them as “amazing” “the best book ever” or “well worth the read” ever again. Oh and it will have chocolate, obviously. Lots of it.

I really enjoyed reading this.  Being so short I found it quite a quick read and that was my only complaint about it.  I’d have liked it to be longer!  It didn’t need to be longer because it told the story perfectly well without feeling like bits were being rushed or skipped.  But it’s Star Trek and I love Star Trek books and it needed to be longer so it wasn’t over so soon.

As I said the plot didn’t need more but I would have enjoyed a few extra moments outside the plot – the “family touches” if you will Beverly, Picard and Rene could have had more screen time.  I love Picard as a father but I find it most bizarre that he named his son Rene. I realise it was after his dead nephew but surely using that as a middle name would be more appropriate.  It feels weird.  Or we could have found out how Worf is getting on since Choudary was killed because you know it seems like with the exception of his weird thing with Troi every single love interest Worf has ever had has died. Let that be a warning to you Star Trek characters, don’t fall in love with Worf. You’ll die if you do!  But mostly I would have enjoyed these moments so it was longer and didn’t end so soon.  I was enjoying it a lot.

This book follows on from The Cold Equations trilogy that came out at the end of last year.  I don’t necessarily think you need to have read those books to understand it.  There is one mention of something from those books that will be lost on those who haven’t read it but it’s just in passing and I don’t think it would ruin this for you.  I do think that you need to have read the Typhon Pact books before reading this because they feature here. Although there are probably enough reviews and spoilers around on the net you could get the gist of what you missed if you haven’t read them (but seriously, if you like Star Trek books why haven’t you read them?)

You most definitely need to have seen Star Trek Generations.  I really enjoyed seeing how a revisit to the Nexus tied up a few loose ends for Picard.  And how the changes in his life since his original visit changed his “dream” whilst in the Nexus and how he dealt with it both there and after.  It’s made me really want to rewatch Star Trek: Generations and I may well do that later on this strangely snowy St Patrick’s Day.

You Know You’re A Book Blogger When… #fridayreads #amreading #books

…someone tells you they don’t know the name of the book they’re reading but it’s good. It’s big and yellow and about lots of people and just to set the scene… And before they can even start setting the scene you’re telling them that the book they’re reading is Capital by John Lancaster and that you’ve got a review copy.

File this under “you couldn’t make it up.”

Last Wednesday I got the news that I’ve been awarded ESA for two years. I’ve been put straight into the support group. It’s definitely the right decision and now I’ve had a chance to think about things and calm down I’m relieved its sorted and ok with it. But it’s not a comfortable place and if I’m completely honest I felt like I must be much more disabled than I realised.

I wrote more about that, the ESA process and how it relates to me over on Bea Magazine

And then yesterday I got a letter telling me about my DLA entitlement for this year. And all about how DLA is being replaced by PIP. I’ll be called for reassessment for that at some point.

So I just get to the point where I can stop worrying about ESA. And now they want me to worry about my DLA?! Fantastic*

I think you file that under “couldn’t make this shit up.”

*I’m not worrying about DLA because I have an indefinite award and the reassessment process for that category doesn’t even start until 2015 (meaning my ESA will come up for reassessment first most likely) but still….

50 Questions That Will Free Your Mind – Question 2

In 2011 I came accross 50 Questions That Will Free Your Mind I was very intrigued by the questions and decided to start answering them on my blog. I only actually answered the 1st three before abandoning the project but it’s something I’ve wanted to restart for a while. Having just decided to restart I chose to answer the questions I did before as well as the others but I didn’t read what I wrote in 2011 until after I finished writing this.

WHICH IS WORSE: FAILING OR NEVER TRYING

For the most part I’d say never trying is worse than failing.  I’ve done many things that I’ve found difficult.  I’ve done many things that people have said I’d never be able to do.  And sometimes after never being able to do something I’ve finally figured it out.

I love wearing my hair in two plaits.  But up until a couple of weeks ago I could never plait my hair.  I don’t know why I couldn’t do it.  And I don’t know what changed but one Wednesday night I thought “i wish I could plait my hair” and started playing with it and something obviously clicked because I managed it.  It’s not easy.  It gets messy and I often have to redo it a few times before I get it right (in fact I often have to redo it so many times I give up and revert to a ponytail or something else) but it’s something ticked off the list.

If I never did something because I was worried about failing I’d have never achieved anything in my life.  One thing about being disabled is that a lot of people have very low expectations of you. Lower than they should in my opinion. I’ve proved many people wrong.  Sometimes it’s been a mistake but other times it’s worked.  The times when it’s worked can be divided into “yeah I probably shouldn’t try that again cos it worked but was sorta dodgy” and “yup that can be done again”.

Others who don’t really understand disability may have unrealistically high expectations of what you should be able to do if only you would try.  That’s something I’ve experienced but as someone who has always been disabled in a way that is very obvious (wheelchair user) I suspect I get this less often than those who have less visible and/or more recent disabilities.

I might on a very good day be able to do a bit of walking. I’m talking maybe 5 metres. But that doesn’t mean I should always try to do it.  Because it takes a lot of my energy and it causes pain.  Because I have little balance and can’t manage to do things if I’m not in my wheelchair (my wheelchair being better than a regular chair because it’s very supportive and set right for me). So many people would probably see it as worth it to walk and get to go to a place my wheels won’t go.  But if doing so means I don’t enjoy what I’m doing because I’ve used so much energy. Or if worse it means I can’t manage to do things like make food later it’s not worth it.

So, yes. I think it’s better to fail than to never try.  But at the same time I think it’s very important to recognise when the cost of trying may be too. much.

It’s a boundary that for me is ever changing and I’m still learning about.  I’m not sure I’ll ever pin it down fully.  I get it wrong a lot but that’s ok.  I view it as something like a tightrope.  I’m trying to balance on it and not hurt myself but sometimes by putting so much focus on getting it right I might make it harder for myself or miss out on things that I wouldn’t if I didn’t just relax and enjoy the experience.

Having written this I just went back and read my answer from 2011. The answers are basically the same but it would seem my attitude to the possibility of not trying has changed and I’m more open to that idea.  Possibly because I’m more aware of the possibility of getting hurt and the problems that can cause? Interesting.  I only have one more of these questions left to reanswer.  I think I might miss having the comparision for the other 47. Maybe anyways.

Days Like These by Kristian and Rachel Anderson

I received a review copy of Days Like These: a life cut short by cancer, a love that touched the world by Kristian and Rachel Anderson and spent a few hours yesterday morning curled up in bed reading it.  I’d decided that I wanted to read lots in honour of World Book Day and this definitely the right book to choose for that!

When Kristian Anderson received the diagnosis that every devoted husband and father fears, he refused to resign himself silently to fate.

He began a brave and candid blog as he underwent treatment for cancer: sharing the joy of each small victory, the devastation in every setback, and the agonising realisation that he wouldn’t always be able to protect and comfort his little boys when they were lonely or afraid, or grow old with his wife and soulmate.

His posts full of hope, faith, and breathtaking honesty captured Australian hearts, then swept across the Pacific, gathering followers. A poignant video tribute for his wife Rachel became an internet phenomenon, attracting messages from well-wishers across the globe.

After his death, their love inspired Rachel to bring together Kristian’s blog entries combined with her own intimate reflections. Days Like These is a heartbreaking account of her husband’s final battle, his strength and courage, but it is also a story about coming back from grief, and learning how to live again.

I hadn’t heard of Kristian or his blog when I spotted that this book was available for review.  Which is a shame because I think I would have enjoyed reading it.  The book comprises of some of his entries from the blog and some thoughts from his wife Rachel.  It’s really really good and I highly recommend it.

Kristian was religious and reading the book it’s obvious how much that came to mean to him.  A lot of bible verses are spread through out the text but just really as he thinks of them and when they are relevant to what he’s doing/thinking/talking about at that point in the book.  It wasn’t at all preachy.  I’m not religious at all and I didn’t find them a problem although I do know one or two people who are very staunch atheists and totally anti-religion who would hate this book for that reason.

He was also really into musical and several songs are mentioned throughout, several with the lyrics.  I really liked that because I’m also really into music and find a lot of meaning in song lyrics.  I use them a lot (probably more than you would realise reading this blog).

I literally read this book cover to cover (I stopped once to look online for the video tribute Kristian made for Rachel when I hit that part of the book) and I’m really glad I did.  It managed to take a painful and sad subject and express that but also the hope that shone through for them and the happiness they experienced at times throughout the experience.  It was also a nice read.

Some people don’t think blogs should be turned into books.  I’ve only had the quickest of looks at Kristian’s blog today and yes a lot of the book is on the blog.  But it feels to me as though this book is so much more than “a blog published in book form.” And I highly recommend it.