BADD 2014 will be Thursday 1st May 2014

It’s nearly 1st May!  And if you’ve been around my blog (or many other disability blogs) in the years dating back to 2006 you might know that in the disability blogging world 1st May is also known as Blogging Against Disablism Day or BADD.

BADD is run by The Goldfish – you can see this year’s launch post here.

She describes it as

  This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made.

Blogging Against Disablism Day is not a carnival of previously published material. The point about doing this around one day (or there abouts) is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you’ve written in the past as you wish.

On the day there will be a master post over on Diary of a Goldfish linking back to all the contributions to BADD (I was going to say BADD posts but that could be misconstrued!). They will also be on twitter – @BADDtweets – and facebook.

I’ve taken part every year since it’s inception and will be taking part again this year.  This link will take you to all of the posts I’ve written for Blogging Against Disablism Day.  They’ll be a new post on Thursday in that collection.  I’m not sure what form this years post will take or what I’ll write about but I would like if at all possible to write something more positive than I have in the last year or two.  But I’m not convinced that will be possible because I’m really not feeling too positive right now.

 

I had been saving my Can You Actually Hear Yourself? Post to write about for BADD but I decided against it and wrote it last week instead.  In part because it was really bugging me and I wanted to get it out.  And because I figured there would be something else to write about between then and now.  I hoped there wouldn’t be but I thought there probably was.  And at the moment there is already one small thing I could write about.  Nothing major and I hope nothing major will come.  But I doubt it.

I really, really do.

A Jersey Affair by Georgina Troy

I received a free copy of A Jersey Affair by Georgina Troy in exchange for review.  The fact I received a free copy in no way influences my review but I do try to be fair. A Jersey Affair is book two in Georgina Troy’s Jersey Romance series which she describes as “a series of stand alone romance novels set in Jersey.”  I don’t think you need to read the first one, A Jersey Kiss, before reading this one.  I haven’t read it and it didn’t make any difference to my enjoyment of A Jersey Affair.  But that said I would like to read A Jersey Kiss.  Rumour has it book three in the series is A Jersey Bombshell and is coming out winter this year. I’ll look out for that too. Probably not go reaching for it the first day it comes out but I will keep an eye out for it because I’m intrigued about the bombshell

When shoe designer, Paige Bingham is jilted she decides to enjoy her honeymoon-for-one in Sorrento. What she doesn’t expect is to meet a mysterious entrepreneur, Sebastian Fielding, when she gets to Italy. The sting of her rejection slowly eases as he introduces her to the enchanting ancient sites he knows and loves.

Unfortunately, soon after Paige returns to her home on the island of Jersey, she discovers that not only is Sebastian’s company taking over the struggling store where her business is based, but that her concession is probably surplus to his requirements.

How can Paige stop her fledgling business from going under? And what can she do to quell the gossip now that the paparazzi have published their untruths about ‘A Jersey Affair’?

I liked A Jersey Affair.  It was interesting and had a nice feel to it.  I doubt it’s going to be one of my top ten books of the year should I decide to write such a list but it’s definitely a good book and I’m glad I read it. I’d recommend it to anyone who likes chicklit and wants something easy going to while away a few hours with.  As much as I do like a book that challenges me and I can get my teeth stuck into now and then having spent a lot of time over the last few weeks reading that sort of book it is always lovely to read something for pure escapism and A Jersey Affair fulfilled that brief very well.  Finishing it off after a stressful several hours yesterday sorting out benefit paperwork was the perfect Sunday night wind down.

At the start of this book I didn’t think I was going to like it very much.  Sebastian annoyed me a lot and Paige seemed to trust him too much too soon in my eyes.  But maybe I’m just a misery and not very trusting! It improved a lot very quickly and I was able to overlook that. In the end I did like find it to be a good book. I did guess one or two of the twists in it but even then it still managed to suprise me with them coming sooner than I expected and happening in different ways to the cliche chick lit standard format I’d expected, which added to my enjoyment.

Sometimes I feel like I’ve been blogging about books too long and that my reviews are getting a bit stale and samey especially when I’m reviewing a book like this. It’s easy to find ways of expressing how much I hated a book or to gush about an absolutely amazing life changing book (not that I’ve read any books that fall into this category since probably last year) but when it’s a book like A Jersey Affair which I really liked and am more than happy to recommend I feel like I need to find new ways of saying “hey this was a good book and you should read it.”  But you know what?  This was a good book, it was well written and enjoyable and if you read fiction (I know a couple of my readers don’t – I still haven’t figured out what it is they do with all their time if they aren’t reading) there are worse things you could do than read A Jersey Affair.  And it’s probably a poor thing for a writer to say but if that’s a stale and predictable and boring thing to write I don’t really care – it’s the truth.

April Readathon

11:06 am

Today is Dewey’s Readathon.  I think this is probably the sixth time I’ve taken part in this.  And I nearly didn’t sign up this time, kept changing my mind for several days.  Right now I’m thinking that probably deciding against it would have been a better idea.  Mostly because I’m tired and not feeling 100% well (I’ve had a cold which turned to very painful sinusitis which is clearing up but I feel off today).

But I will be reading because I need a lazy day catching up on some rest and trying to do something about the ridiculous amount of books I have in my flat with the status of to be read or TBR.

I’m undecided about what I’ll be reading and in what order but it’ll probably involve some actually books, a kindle book and definitely I’ll listen to a bit of my current audiobook (Sophia’s War by Avi) because 1) I’m really enjoying it and 2) I can do other stuff like make food and my crochet while listening to it.  I have a review scheduled for Monday and I need to finish reading that book.  I’d intended to read it pre readathon but the book I was reading before that took longer than I expected to finish – I think because as sometimes happens the kindle page numbering was off.  My kindle said it was an unabridged version of Mill on The Floss by George Elliot and had 340 pages.  But it felt a lot longer and the 1001 books app, amazon and goodreads all say it’s 500 pages which feels more likely.

Now I’m writing this and thinking about it more I’m feeling more interested in the idea.  But before I start reading I must get ready to face the day and then visit the supermarket.

I think my first book might by The Timekeeper by Mitch Albom but knowing what I’m like I’ll probably change my mind again by the time I’ve been shopping and am home again and reading.

 

Update 2 – 4:01pm

So, as predicted plans got derailed and I didn’t start with The Time Keeper.  I am very definitely reading that next however.

I had a bit of a problem with my powerchair (I accidentally drove it off the path onto the grass when trying to avoid the bin which had been left slightly blocking my front door. It’s happened before and it’s been fine but it’s been so wet the last few days the grass was boggy and I sunk a bit and got stuck) and ended up starting reading Unwell by Marie Chow on the Kindle app on my phone whilst I awaited rescue.  The kindle book I’d wanted to read wasn’t on there despite my sending it to my kindle last night so I went with that.  I was only reading it for 20 minutes before rescue arrived but I was hooked so when I was rescued, had been to the supermarket and was home with some lunch in front of me I went back to it and read the rest of it in one go.  In total it took me about two and a half hours to read Unwell.  It was really good.  I don’t want to say too much because I’m taking part in Marie’s blog tour and have agreed to review it in a couple of weeks. But it’s highly worth reading and pretty unusual.  I’m actually glad I’ve got some time to think before I write the review so I can do it justice (I usually read things right before I review them).

Title: Unwell

Author: Marie Chow

Pages: 275

Format: ebook (read on the kindle app on my phone then on my kindle)

Why did I choose this: It was available for a blog tour and I thought it sounded like something really interesting and different to my usual fare.

Did I like it: yes definitely

Would I recommend it or lend it to someone else: yes to both.

If you’ve ever read my blog before you might know that I really like quotes.  One of the things I thought it might be fun to do for the readathon was to find a quote from everything I read to share here.  That was actually harder than I thought for Unwell but here’s what I’ve settled on.  It’s from relatively near the end of the book but I don’t think it spoils it:

“It’s easy when you’re young and brave to believe and hope.  To tell yourself: I will let go of the bad and only remember the good.  To admit that holding onto anger hurts you more than it hurts anyone else.  But I can’t and I won’t.  I know myself well enough to know I’ve never really let go of any anger or perceived injustices.  Yes, yes, maybe I could, maybe I just don’t want to.”

 Update 3 – 7:30pm

I just blew through The Time Keeper by Mitch Albom in about an hour and a quarter (according to the clock it was just under an hour and a half but I threw some potatoes in the oven for jackets in the middle of that and my Mum rang).  That’s the fourth of his books that I’ve read and I’ve found them all very quick reads that draw you in and make you wish they were a lot longer.  But that said I really thought The Time Keeper ended at the perfect point despite it’s leaving me wondering about a couple of things.  I was thinking that I’d be passing this on to my mum to read but she told me she’s already read it and she really enjoyed it too.  I think is the best of his fiction books that I’ve read but overall I probably enjoyed his nonfiction Tuesdays with Morrie more.  That said I’ve not read that for several years so it might be I would change my mind if I reread it.

Title: The Time Keeper

Author: Mitch Albom

Pages: 238

Format: paperback book

Why did I choose this: I spotted it about six months ago (I want to say it was last October) in Waterstones and it caught my eye because I’ve enjoyed all the previous Mitch Albom books I’ve read.  The idea of a book about Father Time seemed fun.  I pulled it out for the readathon because I thought it would be quick and enjoyable which it was.

Did I like this: so, so much.  I’d say I liked it more than I did Unwell (the book I read first for the readathon) but they are so different it’s hard to compare them and that doesn’t mean Unwell isn’t good.

Would I recommend it or lend it to someone else: I would very very highly recommend it.  But I’d only lend it to someone if I could guarantee I’d get it back.

There were a lot of quotes from The Time Keeper I wanted to remember and could have shared but I’ve chosen this one:

“Try to imagine a life without timekeeping. You probably can’t. You know the month, the year, the day of the week. There is a clock on your wall or the dashboard of your car. You have a schedule, a calendar, a time for dinner or a movie. Yet all around you, timekeeping is ignored. Birds are not late. A dog does not check its watch. Deer do not fret over passing birthdays. an alone measures time. Man alone chimes the hour. And, because of this, man alone suffers a paralyzing fear that no other creature endures. A fear of time running out.”  

Update 4 – 9:08pm

So a couple of weeks ago I had some time to kill whilst waiting for my friend. And I was at London Waterloo station where there’s a shiny new branch of Foyles so you know the 20 or whatever minute wait was all about books.  One of the books that caught my eye was The Embassy of Cambodia by Zadie Smith.  It seemed from the blurb and first few pages that I read that it woud be good.  But it’s only 64 pages long and not only that but in terms of the size of the pages it’s tiny (seriously one of the smallest fiction books I’ve ever seen) so I figured it probably wasn’t worth the money and left it there.  But then earlier tonight I figured why not see if it was available on Kindle and when it was I bought it. This may have been a mistake. But it was something I wanted to read and it filled 40 minutes or so while I ate my dinner so all in all it was worth it.

Title: The Embassy of Cambodia

Author: Zadie Smith

Pages: 64

Format: ebook (kindle app on my PC)

Why did I choose this: It really caught my eye in a shop because of its unusual size and bright colours and I thought it sounded good. So when I was thinking I wanted something very very quick to read next I decided to buy it from Amazon this evening

Did I like this: I wouldn’t say it was bad but I would say it doesn’t really seem to have a plot as such.  Which is fine because not all books do.  But I didn’t understand what this did have and what the point of it was.

Would I recommend this or lend it to someone else: No.  In fact I’m planning to send some books to the charity shop soon and if not for the fact this was an ebook it would definitely be one of the ones going without any hesistation.

No quote for this one because I couldn’t find anything worth quoting or remembering.

Time for a break now I think.

Update 5 – 12:26am

So I’ve decided that the readathon is stupid and I’m never, ever, doing it again.  And I really mean it this time.

 

The slightly more rational part of me knows that it’s bedtime and I’m tired and remembers thinking and making a similar decision with each readathon I’ve ever done before for similar reasons. And I probably don’t really mean it this time when it comes down to it.  But it’s definitely a bit of a love hate relationship for me because I love taking a day out to read and relax yet get annoyed by certain parts of it that don’t work for me. I should totally just ignore those but it’s easier said than done!

In the meantime I should add to my reading totals for today that I listened to an hour and a quarter of my audiobook – Sophia’s War by Avi and I should finally be able to finish that tomorrow.  I was stretching and chilling for part of that time and then I did some crochet for the rest of it which was nice.

I’ll be reading again tomorrow and may update this post then but for now I really must call it a night (even if that probably means I’ll end up listening to more of Sophia’s War as I go to sleep)

Can you actually hear yourself?

Sometimes I think I should start carrying a dictaphone or similar around with me everywhere and recording my conversations.  Because just lately so many people have said things to me – people who I know – and have come across so ableist that I’ve been shocked.  And in a couple of the cases I’ve known what they’ve actually meant and suspected that if I made them listen back to what they said they may well realise how inappropriate their wording was.

In two of the three most recent cases I feel confident that the other person in the conversation didn’t mean to hurt me and was just wording things wrong (and in one case was trying to play devil’s advocate).  But that doesn’t take away the sting and the hurt in hearing people I have an ongoing relationship with (in most cases by necessity although they are friendly relationships built I thought on mutual respect and in at least one case I could maybe see actual friendship developing if we met in a different setting) say things which lessen my worth and discriminate against me because I’m disabled.  I’m not less but their careless comments suggest I am and show a thoughtlessness I didn’t expect from most of them.

Those comments hurt more than similar ones from complete strangers.  Because I’m not just a random girl in a wheelchair to them.  They know that I’m Emma.  And we don’t know each other well so they may well not know very much about Emma but in almost all cases they we’ve known each other a couple of years and we know enough about each other for them to have a pretty decent idea of who I am and what I believe in even if they don’t know all the ins and the outs of what makes me tick and my day to day life.  And those comments that hurt me aren’t being said by the stranger on the street or the woman in sainsburys but by someone I volunteer with. Or who I sail with or who goes to Thursday night crafts or the disability group I chair or the NaNo group I’m part of or whatever.

I can, often, come up with some snappy response that makes it clear it’s inappropriate and ableist.  But sometimes it’s not appropriate for me to do so.  Or I can’t because I’ll lose my shit completely if I do so.  and sometimes like one occasion this week I can’t actually respond properly because I’m just blindsided and left gaping that someone would have the sheer audacity to think that was acceptable. So I flail and try to say something but don’t actually manage to respond how I should. So I just get silently frustrated and wonder if they can actually hear what they’re saying?

And then I think how handy that mythical dictaphone may come in because if I could play it back and make them realise what they’ve said I probably wouldn’t need to say anything at all.

 

You Know You’ve Got CP When…

I’ve had my hair in all sorts of lengths, styles and colours over the years.  But it’s been over two years since I last dyed it and I’ve just about grown my roots out. When people commented on my outlandish hair they’d sometimes ask if people stared. I used to joke that I dyed my hair purple or blue or pink or shocking red because people would always stare at me because of my chair so why not have my hair a crazy colour and give them something to stare at.  Putting it on my terms rather than theirs.  The last time I dyed my hair purple (not the last time I dyed my hair, that was a mahogany colour) was in 2011.  It was the night before I went for serial casting and I described it as a “coping strategy.” when asked about it.  I have unused bottles of dye in my bathroom in a variety of colours (at least four) because I keep buying the dye but not getting around to using it.  One day I will dye my hair again and it’ll probably be soon.  But soon doesn’t seem to have arrived just yet.

I’ve had my hair cropped short a couple of times, it’s been long several times and I’ve had a lot of short and long bobs.  I seemed to have spent years rocking the varient on a bob look. I was growing my hair for a long while, mostly because I liked the idea of having it up in a fancy style for my brother’s wedding.  His wedding was almost a year ago and my hair is still long.  I don’t really have any plans to get it cut short or into a different style anytime soon.  Part of me would like to get it cut properly short again.  But there are many reasons why I’ve decided against that.  Which mostly boil down to the upkeep of it.  It’s much harder to keep short hair looking good as it is long hair.  Plus, I like my long hair and being able to do different stuff with it.  This is probably the longest I’ve had my hair as an adult but I did have it about the same length for a while when I was at uni.

On Thursday I went to get my hair trimmed.  I’ve been getting it trimmed every two or three months for the last year or so.  I wouldn’t say I’m growing my hair any more because it’s really long now.  But I just go and ask them to trim it and stick the layers back in to give it shape.  At the same time I have been wondering vaguely about just stopping getting it cut for six months or so – my sister hasn’t had her hair cut for something like over a year and it doesn’t look like it’s harmed her any.  I’ve not made any decisions yet but was definite that a cut was required because if I’m keeping it this length it needed it and if I’m not how could I say “I haven’t had my hair cut for six months/a year/whatever” when I couldn’t have told you if it was January or February when it was last cut?

I go to the local drop in hairdressers and as she was brushing my hair ready to cut it I kept feeling her accidentally but gently knock the push handles on my powerchair.  Several times.  Because, it seems my hair is so long now that’s roughly where the ends of it are level with.  Having long hair already causes a stupidly minor wheelchair issue in that the odd bits of hair that shed tend to congregate and wrap around my castors. but it seems I have something else to consider when thinking about whether to let my hair get any longer or keep it like this or what to do.

I’m totally bemused by this.  It’s a wheelchair issue I never expected to have.  And well, you know you’ve got CP when your wheelchair suddenly plays a role in hair style choices.

We’re all going on a quote hunt

I’ve been looking at disability statistics lately.  I wanted one particularly statistic and ended up getting sucked in by several different ones.  But that’s a story for a different blog entry.  One that I don’t feel like writing right now.  I was then thinking about one of those statistics and thinking that I’ve read a quote similar to it.  I was pretty sure I’d shared it here so I went hunting through my quote entries.  I don’t think it actually is here but I found several I’d forgotten about and thought I’d reshare.

“If someone asked you ‘can you swim a mile?’ you’d say ‘nah’. But if you found yourself dumped out at sea, you’d swim the mile. You’d make it.”

 

~Gertrude Boyle

“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”

~Neil Marcus

Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.

~Susan Wendell,
The Rejected Body: Feminist Philosophical Reflections on Disability
“People take different roads seeking fulfillment and happiness. Just because they’re not on your road doesn’t mean they’ve gotten lost.”
~H Jackson Brown, Jr
“It is only possible to live happily-ever-after on a day-to-day basis.”
~Margaret Bonnano

Busy

It feels like ages since I sat down to properly update my blog.  It hasn’t, actually, been ages.  Just over a week since I last updated my blog and a few days before that when I posted before that.  It has however been about two weeks since I posted update type general stuff.  Just haven’t felt like updating.  And I guess you could say I’ve been too busy living to write about it.  But that feels a bit pretentious. And wrong.

I went to London twice last week.  Once to a matinee of Charlie and The Chocolate Factory.  It was good and I liked it but it’s not the best musical I’ve seen.  I’d rank the three I’ve seen this year 1) Wicked 2) Charlie and The Chocolate Factory 3) Ghost the Musical.  It only had one of the songs from the film (Pure Imagination) and it had been moved to a completely different part of the musical.  We also ended up going to Pizza Express for lunch which was nice and very randomly ended up wandering in Royal Festival Hall where we discovered a singing lift.  We went back after the show because we had some time to kill before my train and officially we’d gone in there to get a drink.  But we didn’t get a drink and did end up going all the way to the top and back in the singing lift so we could listen to the singing. I liked it – it was unexpected and fun.

Then on Saturday a friend of mine got married.  She had a really unusual wedding which included a pagan ritual of jumping over a broomstick.  Apparently if a couple jumped over a broomstick together they are considered married.  It was a very small wedding, mostly the groom’s family and three of us who were friends with the bride.  I enjoyed meeting his family a lot and would like to spend time with them again. It’s always good when you meet someone for the first time and the fact you’re spending a lot of time together doesn’t matter because you click.  I also liked the venue (it was the London Wetlands Centre which is a bit like a nature reserve by the Thames on the outskirts of London) but didn’t get to see much of it.  If I could figure out getting there on public transport I might go back with my powerchair and look at the place properly. Going to one of the other Wetlands Centres might be a better goal.  I know one of my local friends has been to another of theres several times but she didn’t grow up near here so I’m not clear how close it is (because I know she hasn’t been recently). We went to the pub after the ceremony which was also fun. I ordered garlic bread to start and seriously you’ve never seen anything like the pile I got given. I had to give half of it away.

The other things that have been going on are my normal volunteering, sailing and a fair bit of sitting outside reading.  My body appears to be wanting me to be sick but my “getting a cold” symptoms haven’t developed which is annoying because I’m just left not feeling 100%, coughing a fair bit and with a blocked nose but not feeling terrible and with no improvement or deterioration. But I’m glad it waited until my busy week last week was over before it happened.

 

For Good

For literally years I wanted to go and see Wicked the Musical but I couldn’t because it wasn’t touring and the London venue has dodgy access (basically, they say it’s dodgy but based on what they say and my parents sussing it out when they went to see Wicked it wasn’t going to be possible).  Then it was touring but it wasn’t coming anywhere near here.

Then I had my last birthday. On the table with my presents and cake there was one about the size of a shoe box but incredibly light.  When I unwrapped it I found a plain brown box full of paper.  And when I got through that I unearthed some chocolate.  And an envelope.  In which were two tickets for Wicked.  It still wasn’t coming anywhere near here.  But it was coming to Milton Keynes.  And my Dad would drive me and go with me.

We went about six weeks ago.  And it was absolutely amazing.  I’ve been listening to the soundtrack ever since and singing along both loudly and badly.  We went to see Ghost the Musical in Oxford a week later and even when I was sat watching that I had one of the songs from Wicked stuck in my head.

I loved the song Defying Gravity.  It was the one song from the musical I knew before we went and I knew it was very me.  But what I really, really loved was the song For Good.  The lyrics have a meaning that I really like.  And I think I have several people in my life (or who have been in my life) that it could be applied to.

(Elphaba):
I’m limited
Just look at me
I’m limited
And just look at you you can do all I couldn’t do
Glinda
So now it’s up to you
For both of us
Now it’s up to you

(Glinda):
I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

(Elphaba):
It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made from what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend…
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant world
Who can say if I’ve been changed for the better?
But because I knew you

(Glinda):
Because I knew you

(Both):
I have been changed for good

(Elphaba):
And just to clear the air
I ask forgiveness
For the things I’ve done you blame me for

(Glinda):
But then, I guess we know
There’s blame to share

(Both):
And none of it seems to matter anymore

(Glinda):
Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood

(Elphaba):
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a bird in the wood

(Both):
Who can say if I’ve been
Changed for the better?
I do believe I have been
Changed for the better

(Glinda):
And because I knew you…

(Elphaba):
Because I knew you…

(Both):
Because I knew you…
I have been changed for good…

Here is another post about this song from another blog I love. If you can read it without really feeling it you’re made of sterner stuff than I am. Since I read that post I can’t listen to For Good without thinking of Maggie whose adventures I followed for years

Spotted at the sailing club

image

The sunset at about 7:30 last night at the sailing club.  I love how blue the sky is in this despite how rapidly the last of the light was fading.  The reservoir is completely empty.

image

This is a close up of the same sunset taken a minute or so later.  Our accessible pontoon is clearly shown here as well as the sunset.  This picture feels darker because zooming in has removed a lot of blue of the sky.

Also spotted at the sailing club: an Emma having her first sail of the year.  Unexpected as there wasn’t any wind so it looked like it wouldn’t happen and then when I got on the water I thought I’d just stall and go nowhere.  I was proved wrong.  I didn’t think I’d manage to get these photos because the sun was fading so fast and I had to wait to be off the water, back in my chair, up on the level and in the car (and for my Dad to have put my chair in the boot because it was in the way) before I could take them.

A part of my body – me and my Action 3

When you’re given a wheelchair on the NHS it’s expected that it won’t be replaced for five years.  The exception to this rule is if you’ve had a change of need.  For example growing up I never, ever, hit the five year mark because I was growing taller and needed bigger chairs.  I was told when I got my current chair and asked for clarification of what a change of need might be that they “wouldn’t expect to see a change of need in someone with CP.”  The five year life of my Action 3 (my current manual chair) is up in about six months.  So I’ve been thinking over the last few weeks about wheelchair use etc.

First of all this is the first chair I have ever had from wheelchair services where I’ve reached the five year mark with it.  I’ve actually been back to wheelchair services for reassessment and/or major tweaks twice in the life of this chair (well three times, but two of those visits were linked) and I’ve had I don’t know how many visits from the mobile technicians to do repairs.  When I went back to wheelchair services last year (when my cushion started leaking gel, basically exploded and had to be replaced) I asked the OT about the five year rule.  She said they don’t automatically replace a chair after five years but look to see if it’s necessary.  She also added that with someone like me who they consider an “active user” they would anticipate having to replace the chair.

So you’d think that I’d be thinking six or so months ahead and bouncing with the thought of a new chair to come. Maybe start looking at options I could get if I got a voucher instead of a chair.   If they literally made me wait until October when the five year mark hits I’d be looking at a new chair for Christmas if time scales work to their best or knowing how these things often turn out more likely early next year.

But I thought about it.  And after not very much thought at all I came to the shocking conclusion: I don’t want to ask for a new chair.

I consider my wheelchairs to be a part of my body.  More so my manual than my powerchair now I think of it.  I wonder if that’s because I’m physically using my body to move the manual rather than just my hand to move the powerchair?

And this manual chair does mostly what I want it to do, when I want it to do.  It’s a bit like my actual body in that sense because it likes to have it’s strops and it could definitely be better but we work well and we’ve reached a good compromise.  I tip to one side and it catches me.  I reach for something in front of me and it moves with that movement as well as with purposeful wheeling. It was the first wheelchair I had that could sit me this upright and reduce my back pain.  And a couple of years ago it gained the most comfortable cushion I’ve ever had.  One that I sort of melt into and that has more support under my left side than my right so my hips are level.

Of course there are bits I don’t like about it but that’s always going to be the case with any wheelchair I have.  I don’t like how easily the footplates break with any force.  I frequently spasm and snap them.  I did it early February and I did it again in early March.  I have the NHS wheelchair maintenance team though who come out when I need them at no cost and no fuss.  A couple of years ago when my backrest broke and I couldn’t sit in my chair they came out within an hour with no complaint or no fuss.  I apologised for calling out of hours and ruining their Sunday.  They didn’t mind at all.  And that was on Easter Sunday.

If I go back to wheelchair services I believe I’ll be offered a choice of the same chair, 1 other chair or a voucher (where they would give me the money they would spend on a chair for me and I could buy something different or better with it and a top up of my own money).

I don’t want a voucher.  I’d lose my access to the NHS maintenance team and given how reassuring and how useful that is I don’t want to do that. Plus, with most of my out of the house mobility being in my powerchair I don’t really need an ultra light weight, sexy manual.  It’d be nice but not so nice that I’d spend a grand and a half to top up a wheelchair voucher as well as god knows how much for five years of repairs and maintenance.  I don’t know what this hypothetical other chair would be.  But I do know that usually they offer one rigid and one folding so it’s probably a rigid one.  And that other than that the one I was offered before was much of a muchness to what I’ve got now.

What I’ve got now works.  it’s a part of my body.  I don’t have to think about where do I put this hand when I transfer.  I’m sat on my bed or my shower seat or whatever and my hand and my chair find there own ways together and to just the right place where I need them for a transfer without conscious input from me.  I’ve got my spiel for folding it down “you see those yellow stickers on the side? By that there’s a catch…” and I know what sort of obstacles it can handle and what it probably shouldn’t but I can just about force it over.  When I get back in the boat after sailing and Dad tells me “don’t freak out but your chair’s broken.” I know at a feel and at a glance when it actually is broken and when its just a case of someone moved it without me in it and found a design feature they didn’t know about.

My wheelchair isn’t a tool.  Society would say I’m wheelchair bound or that I’m confined to a wheelchair.  It’s my freedom, my independence and my life wrapped up in metal and wheels.  If I am ever bound or confined by anything it’s societies attitudes and the barriers they place in my way.  Not by my chair.  Never by my chair.

It’s battered and it’s scratched and I’ve destroyed so many plastic clothes guards that I got pissed off and stopped asking for them to be replaced but pulled them off instead.  It screams my personality by the fact it’s perpetually dirty and shows off my status as a long haired crip who knits and crochets by the fact there’s almost always a pile of hair and a scrap or five of yarn wrapped round the castors.  I bear the scars of my life.  So does this chair because it lives and loves it with me.  And I think it’s got a few years left in it yet.