Any Colour You Want (As Long As It’s Black)

I am, unexpectedly, getting a new powerchair.  The reasons behind that are long and irritating and frankly I’ll get to them in another entry tomorrow.

One of the really good things about getting a new powerchair is something I think some people outside of my immediate family are having trouble understanding.

I got to choose the colour.  I’m excited about that.  My Quickie Salsa M (most recent powerchair) was red with silver swing away footplates because that was the only colour it’s available in. It’s a nice red but I wouldn’t have chosen it.  My Jazzy 1121 (powerchair before that) was technically second hand so I got the green the original owner had chosen (it had, perhaps, been used 5 times by the original owner).  It was a dark green and there wasn’t a huge amount of it so it was OK.

Here’s the thing: if I get to choose a colour for a wheelchair I pretty much always choose the same one. Black.

As a teenager I went to wheelchair services and they said “this is a new wheelchair on the market and it’s only going to be available in black” and I said “well, that’s the colour I’d choose anyway.”  We went back several weeks later to have it fitted and the manufacturer had decided it would be available in a range of colours. As wheelchair services hadn’t specified a colour they’d sent blue. A hideous, bright, horrible blue.  It didn’t help that the seat and backrest slings on this chair were highly patterned with coloured splashed in pink and purple (and maybe another colour?) on black and it really clashed with the blue of the frame. The OT went out of the room for something and I told mum that I hated it. I remember that at my school they had some old falling apart spare wheelchairs, heavy and uncomfortable and ugly as anything. I told her I wasn’t going to use the new chair, I’d rather use one of those.  I left the hospital without my new chair that day and the OT arranged for me to get one in the black I’d been promised.  I felt comfortable in that black wheelchair when it came and that allowed me to get the most out of it I could.

One of my friend’s parents told me point blank she didn’t understand why I’d not been happy with that blue wheelchair and why my mum had pushed for it to be changed. As a young teenager I didn’t have the words to explain it beyond “I didn’t like it.”

When I was at uni I went to wheelchair services at Stoke. As it was the first time they’d seen me it was a long assessment and involved more professionals than any wheelchair assessment I remember having before or since.  At the end when we were wrapping up they confirmed which of the wheelchairs I’d chosen (there were two which would work for me).  They asked if I had any questions “Yes, what colour does it come in?”  They weren’t sure and could probably find out “I want it in black.” I told them.

Not long after I got that wheelchair I was asked to speak to an engineering student – a friend of a friend – who was doing a project about disability equipment. I forget what it was he designing.  He proudly told me one of the features of his product would be a choice of colours. I wouldn’t have to have black, I could have any colour I wanted – just like a bike or a pair of glasses.  I told him I already could have a choice of colour and I’d chosen black.  He didn’t get it.   I tried to explain that a wheelchair isn’t like a bike or a pair of glasses and black was my choice. To him, it was like a bike and you want it to stand out in your favourite colour.  At the time I had 24 hour care and one of my carers was there and seeing me failing to get through told him she also cared for two other students “One with a blue wheelchair and one with a purple one.”  I’m not sure he got what he wanted from our conversation.

I want a black wheelchair because I like black. And because I like bright colours and I like to wear them and have them stand out.  I don’t want to be worrying about whether my clothes will clash with my chair.  I don’t want to be wheeling round in a chair that’s a colour I hate.

And I want people to see me more than they see the chair I’m sat in.  Don’t ignore my chair, you can admire it and ask questions and acknowledge it. This new one is pretty awesome and I think I’m going to be very happy with it. But I’m more than my wheels and having a black one helps with that.  It’s a part of my body and it needs to work for me.

When the wheelchair tech was here with new chairs for me to trial he suggested we tell him what the maximum I wanted to spend was. Less than 36 hours before that I hadn’t even known my existing chair was unrepairable and I was like “uh…”  Mum told him we wanted me to have the right chair for me and she didn’t want to get into a budget.

I’m confident the chair I’ve ordered (Quickie Jive M Hybrid) is that best  chair for me.  And a part of what will make it work for me IS the fact it’s coming in black.

>Milestones – The 75TH Disability Blog Carnival!

>Welcome to the 75th Disability Blog Carnival!  I chose the theme Milestones based solely on the fact that 75 seems to be a huge number! I have to say I didn’t realise when I chose the theme that the day of the carnival would be a bit of a milestone day for me.  And yet the sort of milestone that only another crip can truly understand the meaning of.

My powerchair broke down almost four weeks ago.  It’s been a long and complicated road to getting it working again.  And it’s been really hard.  Today it returned home, cleaned, with new tires and with the fault fixed.  I’ve been treating it to a nice long charge before taking it out but tomorrow is the day!

I’m not the only one who has been sharing their milestones and their thoughts.

Gemma has written about a milestone in her journey with mental distress.  Her bravery and her honesty in Finding Ways To Cope show just how strong she is (contains potentially triggering material)

One of the things I like to do when I host the carnival is to include some new or new to the carnival bloggers.  I love discovering new blogs and I was especially pleased when Hannah started her blog because she’s an old school friend of mine.  In her post for International Wheelchair Day she wrote about getting a wheelchair and the freedom it gave her – a pretty big milestone in life

Andrew is also new to the carnival.  Milestones is his first submission and is about his journey since losing most of his vision

Allison is turning 21 this month which I hear is a big milestone in the US as it’s the legal age to drink (it’s 18 here).  She wrote about how she plans to celebrate and how she and her family have made sure she hasn’t missed out on other milestones even when her blindness made the traditional way impossible.  Celebrating Milestones With My Dad is well worth a read and I’d like to take this opportunity to wish Allison a very Happy Birthday!

As I have CP, I’ve always been disabled and so have no before and after memories or a day when my life changed.  Funky Mango (welcome back to blogging!) was diagnosed with MS on 17th March 2005.  In Happy Birthday to my MS she explains why it’s a day she celebrates every year

For Todd the last Christmas Day represented a difficult personal milestone showing the difficulties disability can bring and how not all milestone moments are good ones and it’s not always possible to be happy on days like Christmas.

Carl has been thinking about various different Milestones in his life – and how some people make more of them than he thinks necessary.  The old “oh look, a CRIPPLE!” type thing.  His post is thought provoking and very interesting (and not just because he described my blog as great).

Sue Marsh is an avid campaigner and blogs at Diary of a Benefit Scrounger.  She recently did a week of posts on ESA (Employment and Support Allowance) which is the newish benefit to replace Incapacity Benefit and is paid to people too sick or disabled to go to work.  I won’t go into details as they are all on Sue’s blog but suffice to say ESA has been badly planned and badly executed and a lot of disabled people are scared. Where’s The Benefit frequently receives comments from people considering suicide if they don’t get ESA and there are many similar stories on The Broken of Britain and One Month Before Heartbreak.  Recently it was announced that a public inquiry is to be held into ESA – a huge milestone considering how many people have been campaigning for change.  In ESA Week Ends in Success! Sue explains the details of how to submit to the inquiry.  She is also offering to help anyone who for whatever reason can’t put their submission in the required format.  I’d like to encourage all UK residents who read this  to strongly consider doing so.

Elizabeth McClung recently read Wish by Joseph Monninger and in made her think.  She reviewed it and shared how it relates to her own experiences.  People don’t always let you do what you want and experience what you want when you have an illness or disability as both the book and Elizabeth’s own experiences showcase.  An example of the milestone twisted by the well meaning but thoughtless person on the sidelines.  It sounds like a great book as well, I really want to read it now!

Milestones: Seeing Change Blossom Before Your Eyes is posted on Life of the Differently Abled.  It’s about having CP and being a blogger and it’s perfect for any Disability Blog Carnival but especially for this one.

Apparently, today is Cerebral Palsy Awareness Day (I didn’t know) which I’m sure you’ll agree is kind of important and what are milestones if not important?  Spaz Girl has written What I Want You to be Aware of on CP Awareness Day

Cynical Beauty is getting married this year which is pretty much one of the biggest milestones ever.  Her blog, Disability and I Do is about the planning and the thoughts behind it.  I particularly liked her post Should You Hide Your Scars On Your Wedding Day?  And if we’re talking about weddings I should mention that another crip getting married this year and blogging about it (amongst other things) is Mary.

That’s it for this carnival I think!  As always let me know if any links are wrong or otherwise don’t work.  I believe the next carnival is being hosted by Cheryl but I don’t know the details.

>I’ve Had Enough

>

It’s three and a half weeks since my powerchair broke down.  
And I’ve done relatively well since then.  I’m proud of how well I’ve done in fact.  I’ve done more wheeling in my manual chair than I probably have in years.  Admittedly I was in a lot of pain for two days after with a very sore neck and achy shoulders but doing so felt good. And the tears have only fallen once (although they came close to coming again this morning.).  A big part of that is probably my antidepressant – but that’s why I take it and a big proof that it’s working.
Wheelchair repairs taking a long time is normal.  Wheelchair parts aren’t like car parts and they can take a while to come.  I understand that.  That’s “disability normal”
And I do realise there are people who get to go out a lot less than I do even without my powerchair.  That need powerchairs and don’t have them or who can’t get out of bed. Who don’t live in fully adapted flats like I do.   I’d usually be the first to tell you that I’m very lucky in more ways than one
But not today.
Today I’ve had enough.
I’ve had enough of not getting out for days.
I’ve had enough of not seeing people on some of those days
I’ve had enough of understanding that wheelchair parts take time
I’ve had enough of going to the supermarket or wherever when someone can go with me not when I want to.
I’ve had enough of thinking of those who have it worse than me
I’ve had enough of having to tell my friend my PIN so she can go to the cashpoint for me.
I’ve had enough of online shops and waiting for parcels to be redelivered because I can’t get to pick it up
I’ve had enough of someone going to the bank, post office or library for me.
I’ve had enough of managing more in my manual chair and feeling good about that then paying with lots of pain the next day or two
I’ve had enough of not knowing when my chair will be back
I’ve had enough of freaking out my friends with how down this situation made me
I’ve had enough of begging for lifts and favours
I’ve had enough of apologising and feeling guilty (everyone’s understood and no one has minded but…)
I’ve just, basically, had enough.
I want my powerchair back.
But most of all I want my independence and my life back.
I am feeling a lot better about all of this than I was earlier today.  But sitting here writing this it occurs to me that I am lucky.  If the planned cuts to services and benefits here in the UK go ahead there’ll be a lot more people in the position I’ve been in for the last few weeks.  The difference is, however, when I get my powerchair back a lot of that should be allievated for me – and it shouldn’t be more than another week (I hope!).  For many of those people, that possibility wouldn’t exist.  It might never exist again.

>Updatey Updateness on the Powerchair Armageddon Situation.

>I heard from the wheelchair engineers first thing this morning.  They’ve made some adjustments my chair and got it working again by bending some frayed wires and reconnecting them (I think) but asked if I wanted the piece properly replacing.  Baring in mind that they said “it could last a week or it could last six months” and the replacement part is much less than anticipated (as its a different part to the worst case scenario part they thought and told me about) I told them to go ahead and replace it.  They’ve also managed to get the freewheel working again – it was just disconnected or had worked I think although how the hell that happened I don’t know.  Possibly it was with all the getting lumped around on freewheel on and off of a ridiculously high taxi that only had a ramp and no tail lift.  And they are going to replace my tyres.

It’s much less than I’d anticipated but it’s still going to be several hundred pounds.  Before any parts have come or been fitted my bill is already over £100.  As the guy said on Monday when he picked it up – it’s much less than a new chair.  Add in the fact I had new batteries about six weeks ago and it’s likely I’ll end up having spent the better part of a grand on that chair this year.  Thank God for DLA! But even that doesn’t go far… the work that’s been done already is more than a weeks worth of my DLA.

Unfortunately wheelchair parts aren’t like car ones where you order them in the morning and get them in the afternoon.  These parts will take a few days to come at minimum, possibly even a week or more.  It depends if the manufacturer has them in stock and I forgot to ask!

Naidex is in a few weeks.  I’m going for two days with several people I “know” through twitter etc and I’m hoping to see a uni friend too.  This year was going to be all about being one of the “normal” there and meeting some friends and giving some hugs.  But my mum is now heavily suggesting that I go play with some powerchairs too… and I must say that is a very tempting idea.

Watch Out Birmingham! The Crips are coming! And this one intends to try ever single powerchair she can.  Don’t say I didn’t warn you…

>Disassemble

>My powerchair was picked up this morning to be taken to the workshop.  They’re going to take it to pieces and try and work out what’s going on.  Something was mentioned this morning about hooking it up to a computer or some such but I don’t know anything about that.  I don’t know how long it’ll be gone because it depends if it needs parts (which we think it probably will) and I’ve also asked them to replace the tyres while they have it.  Even more expense but better to do it all in one hit.

One of my favourite films as a child was Short Circuit.  There’s a totally ace scene it in where Johnny Five realises that disassemble means dead and gets really worked up yelling “no disassemble Johnny Five!”  I tried to find a You Tube clip but couldn’t.  And last week I used the word “dissemble” in an e-mail to describe what they plan to do to my chair.

The guy who picked my chair up this morning said it would probably be tomorrow before they start to look at it.

I’ve got this vision of my chair in a workshop by itself quaking going “disassemble… dead… disassemble… dead. NO DISASSEMBLE Jazzy 1121!!”

>A Broken Powerchair and The Big Society

>My powerchair has an intermittant fault.  It broke down Sunday last week and stranded me in the middle of Oxford. It was working again after a while so the next day I went to the pool in it.  It broke down again in the changing room at the pool.  Then it started working again and on the advice of the wheelchair engineers I kept using it (although I didn’t go out for a few days) as it needed to happen again before it could be fixed.  This Monday it broke down again in CAB and we couldn’t even freewheel it so I had to leave it there.  The repair guy went to CAB this morning (long story there) but it’s not fixed. I’ve got it home now though it broke down again as soon as I got it in the door. Right in front of my dryer meaning I can’t get to it.

I’ve needed a lot of help from a lot of different people to cope.  Here’s a list:

Random man (he was waiting outside the loo and came in and helped me get moving and then pushed me over to my friends)
Two of my friends (moral support and assistance with getting me in to the taxi)
Autohome’s control centre staff (made it very easy for the scared me to get home)
Taxi driver (pushed me up the ridiculous ramp into the minibus to get me home)
My Dad (came to help get me off the taxi and into my help – pretty much immediately after getting home from dealing with an elderly relative’s own emergency situation)
My Dad again (picked me up and took me home again after family meal)
A Lifeguard (went and found my friend for me)
Another of my friends (helped me out of the building, went to fetch me a drink as I couldn’t move, moved my powerchair
Another wheelchair user’s carer (got my powerchair onto freewheel which required clambering all over it due to it’s position)
The same lifeguard (helped to push my chair off of pool side and out of the building)
The manager of the pool (also helped to push my chair out of building)
The controller of a local taxi company (the only accessible taxi they had free was off the road with a broken meter being fixed. They called a driver off of their lunch break and stopped the repair to come get me home and told him what to charge me)
Another taxi driver (interrupted lunch break to come get me)
A CAB client (was in the room with me in the middle of an interview – I was going to get something – when chair broke and she went for help and then tried to help get me moving again)
Various CAB staff (took over with my client, tried to get me moving again, fetched me my bag and drink, offered me a magazine whilst waiting for rescue, agreed I could leave it there and have the engineer come there)
My Dad yet again (interrupted his day working from home and dropped everything to come rescue me)
My mum (picked me up and drove to cinema when normally we would walk/use my powerchair)
Two CAB staff members (One spoke to engineer about what was happening the other went in slightly early to be sure to be there for him.)
The same friend from the pool (picked me up and took me to the bureau to collect my chair today, dropped my library books back for me, brought manual chair back and helped with powerchair having died again)
my Dad again (he’s coming round on his way home from work to move my chair if he can – probably doubtful – and take my washing back to his house if he can’t).

This is a very long list but it doesn’t include the many phone calls I’ve had to make, tweets I’ve had offering support or even the ridiculousness of the situation with getting it repaired today.  I’ve also not included the wheelchair repair people, one of whom spent a long time on the phone with me.  Nor have I made mention of the fact I’ve had to do two online food shops as I can’t go myself.

They say it takes a village to raise a child.  It feels like it takes much more than that to cope with a broken powerchair.  The Big Society definitely already exists!

>If My Chairs’ Had a Voice – A Blog for International Wheelchair Day

>Today is International Wheelchair Day. As such the wheelchairs that are part of this A Writer In A Wheelchair blog are having there say after I dreamt of blogging a photo of my powerchair with a “I am in disgrace” sign on it. Because it is. Long story and it’s all on twitter anyway.

My powerchair speaks…

[A photo of my Pride Jazzy 1121 powerchair with a piece of paper with what she wants to say handwritten on it.]

Happy International Wheelchair Day!

I am a powerchair usually loved but currently in disgrace.  I broke down twice in 2 days, taking Emma’s freedom, making her housebound.  I’m not lucky enough to be an NHS chair.  Call out and labour will cost £70 + parts – most of a weeks DLA (note from Emma – likely more if parts are needed), financially difficult.  One month ago I had new batteries – nearly £240.  Emma would spend that in a month of taxis if she didn’t have me as she’s not allowed to drive.  I hope she can get me fixed soon.

My manual chair speaks…

[A photo of my manual chair – An Action 3 with a Jay3 backrest – with a similar handwritten sign of what it wants to say on it as above]

Happy International Wheelchair Day!

I am a much loved manual chair, a fact that makes me happy inside.  Before Emma got me she she took a lot of codeine for hip and back pain.  It would knock her out.  Her old manual she bought herself and it wasn’t supportive enough after six years.  I’m an NHS chair and they made me extra supportive with a £400 specialist backrest.  Emma still takes codeine but hasn’t needed it for weeks (note from Emma: probably two or three weeks).  That’s how much of a difference the right wheelchair can make, I’m proud I was that chair for Emma.  Being an NHS chair a lovely wheelchair guy comes to fix me for free.  He came about 6 times in 2010 even for just cosmetic damage.  Powerchair is jealous of me – free repairs mean I’m better looking!  I’m jealous too though.  Powerchair’s batteries mean she goes out with Emma.  As a manual I’m mostly a house chair.  I’d like to see more of the world than this flat and Emma’s Dad’s car.