The 1000 Mile Analysis

WP_20150206_13_45_34_ProIt’s been two years since I fitted an odometer to my Sunrise Quickie Xenon and near on three years since I took delivery.  In that time its seen the hold of planes, been on many trains, been used when photographing cranes (but only to sit in)… and of course, met many a bus.

As I reached a major mile marker this past week, I had a bit of a think about how far the chair has gone and what it has gone through, including:

  • Carrying the children on my knee
  • Countless meetings and walking to them
  • Humidity in butterfly houses
  • Mud in country parks

If it were a car, it’d be having its 3 year service by now – as it is, this chair has had two sets of rear tyres, three sets of front soft-rolls, the left brake broke and had to be replaced and at new year the seat support on the front left broke off, which is now being replaced.

Its a good chair and has worn well – given the choice in the future, I’d probably get another in a flash.  It fits in well with my family life and has taken the brunt of everything it has had thrown at it. 

Would I have another? Certainly.  My only recommendation – get yourself a speedometer and odometer and measure how far and how fast you go – it does make for some interesting numbers.

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The Disabled Persons Dilemma

On the day that the International Day for People with Disabilities is celebrated (A UN recognised date, no less), I want to share something with you from a wheelchair users perspective, a few jokes and observations.

mini-stigs-bwHave you got ‘L’ Plates?  Have you got a licence?  No speeding now! Hahaha. Oh how my sides split… except, they don’t.   Frankly, its ludicrous that I’d need ‘L’ plates when my three year olds can race my wheelchairs around the house and to suggest I might have a licence to walk about is as funny as you requiring a Shoe Lace Proficiency before being allowed to step out of the front door. 

Joking about my choice in mobility might make it feel acceptable to you, possibly even opening you an opportunity to talk to me and say hello, but I would like to offer an alternative: “Hi”.

On the other hand, it is very acceptable to note that my softroll front wheels look slick, or that you have suddenly noticed that the dark paintwork on my chair is green, not black.  It’s pushing the limits (but acceptable) to dream of having lights in your shoes like my old chair has in the front wheels.  (It’s not acceptable though to draw comparisons to your child’s scooter.)  It is fine to sympathise with my as to how cold my hands must get – I’m sure your digits freezing with be just as annoying for you, too.

Its ok to joke with me about the latest political gaff or bitch about the weather.  I am perfectly fine with your knee complaint – I don’t feel uncomfortable just because you are having trouble climbing stairs and I can’t.  I don’t even mind hearing how expensive it is to buy shoes – mostly because I can sympathise with these (especially the last one, being a tight fisted male!)

But I am more than a wheelchair – I am DaddyDoink.  I travel an hour each way to work on the train. I walk wheel down the hill to work each day.  I communicate in fair fluid English (exceptions apply).  I eat lunch. I socialise with colleagues.  I joke with them.  We discuss my growing bus habit.  I finish work at 5 and get the train home again.  But all this will be forgotten at the end of the day.

Especially if the thing that ground my gears the most was someone shouting “Got yer licence mate?!”

The heated area in relation to motion

I have never been a fan of heating things up without necessity.  Coffee requires heating.  So do jacket potatoes.  Pasta.  Coke doesn’t. Neither does salt and vinegar crisps.  Car seats (or wheelchair seats). 

Or so I thought.

I confess that this morning I put a heated towel on my wheelchair to sit on after my shower (its a second one, because I put one around me on so that I don’t sit my bare bum on the cushion – its just not done).  Anyway – both heated.

I had my shower and had that freezing jet of air hit me as I stagger out of the wet area.  I then put a warm towel around me and sat with on the second…

Oh my gosh. Oh wow. Oh – yes.

This should be an option on all wheelchairs – heated seat first thing on a cooler morning.

Oh yes.

Definitely.

The Cylindrical Psychosis

I had to psych myself up.  Take a deep breath. Work out if it was the most economical route or the quickest route or whatever but would it get me there, problem free.

Its not going by foot path nor bus – its tube – an arch-nemesis of the wheelchair user.  I’m going to use 3 different lines, change at two stations – to get to my train home.

Its not an impossible task – but its one that takes a little bit of judgement, a little bit of thought and a chunk of confidence.  And attitude – one of those that says “f*** you to people in your way.

I wasn’t alone either – I had my manager with me, so I had to do this properly or apologise in advance to him for the monster I know I can turn into.

Waterloo to Liverpool Street, peak Friday night rush hour.  Waterloo – Green Park – Kings Cross – Liverpool Street.  Flat access. I knew I could do it – I just had to go for it.

I kicked off on the Jubilee Line westbound for Stanmore.  Two stops up to Green Park on a mildly busy train.  It was warm but bearable.  Step free, totally.  Off at Green Park and up in the lift, my aim next was the Victoria Line.  Wheeling (keeping right) up the uphill stretch in the interchange tunnel to turn left to exit and the lifts – downhill.  This is at first gentle – for 5 metres – then steep for 5, then long and reasonable for another 150 metres.  I did the only thing any lunatic would do – I said excuse me to clear a way and ran humming the brakes down hill, hitting an easy 8MPH as my chair was allowed to succumb to the lure of Law of Gravity.  The Xenon rolls so much more quieter, smoother, neater than the old Quickie Q2 HP, less of a thump as I hit the gap between the tiles on the floor.

Slam the brakes on, turn left, roll through to the lifts – my manager had thankfully kept up.  On to the Victoria Line – the first train crammed and jammed and the second train little better.  But I got the second train – able to get into the wheelchair space and park too, a miracle in itself, as most people are surprised to find a wheelchair user outside of the Jubilee Line, let alone on the tube.

Jump off (not literally – flat access again) at Kings Cross and switch to the Met.  Using the long tunnels, people keep walking 6 abreast and slowly, causing me to get fed up – something I have to live with until a gap opens and I can get moving again, my chair taking little effort to get to speed to enable me to move swiftly to the lift, taking it to the exit and out to go to the Circle, Northern and Met.  Masses of people, most of whom don’t know where they are going.  Through the ticket halls and into the CNM, pushing now to get to the platforms, holding a position and letting others make their mistakes of walking into my path – that pre-meditated aim for the lift which takes me the lines where a Met train for Aldgate is waiting.

I rolled on board.  These trains are new. Flat access. Air conditioning. Success.  I took it to Liverpool Street – success bound for me as I am one train away from being on my train home.  And it all looked so easily done, written down.

But the pre-meditation, planning, thought, mental cajoling to get there was totally invisible.  But it was there.  Took me all of half a second to know I would go for it.  It was a round about way to get from Waterloo to Liverpool Street – but I did it. 

One small roll for me – one giant wheelie for my kind.

I got to Liverpool Street, my journey spend admiring how I could see the length of the train start to finish and rolled off, out and up the short slope to head for the exit gates – my train 10 minutes away and leaving me enough time to get something to eat and book my assistance onwards.

Proof too, that I have a new choice open to me instead of a bus or taxi.  Just like many others.

The Mercutio Analysis

Anguish and pain filled me yesterday whilst I was sat on the sofa, my faithful steed sat on its haunches (yes, it has haunches) beside me waiting to jump into action, when I discovered a fairly deep scratch of painful proportions.

Bearing in mind that this wheelchair is still very new (especially for me) and something that I want to really look after, this scratch on the Xenon hit me like a knife to the chest. 

After blaming all and sundry, I look a close look only to see that this deep mark holds all the hallmarks of my cursed enemy – doors. Its height is perfect to match up to a kick plate.  The cut could only have been achieved with metal on metal contact, like the stuff they make in Port Tybalt Talbot.

Having discussed this issue with fellow chair users online, I think I am off to Halfords for a touch up paint kit for a car… because Sunrise don’t do them for the wheelchair.  I can’t help but feel a trick was missed there.  Although I’ll get it out, I’ll always know it was there though.  Battle scars and all.

The Disability Transport Consultancy Quandary

I don’t think its any secret that I work in Public Transport but also have a vested interest as a disabled person and a transport user.  So this post is closer to my work than usual but I must state – this is my opinion.

Since 1985 the Transport Act 1985 stipulated that there would a board dedicated to advising the Department for Transport (or whatever it is called at the time) about the issues being faced by disabled people and the ways to resolve these issues.  This board is known as the Disabled Persons Transport Advisory Committee – DiPTAC.

DiPTAC have been hugely instrumental in making disabled peoples lives more independent.  Public Transport is a gateway industry – it enables people to access other services.  Health, leisure or chore – if you can’t drive or afford a car because all your money gets sucked up by other costs, public transport is essential.  Accessible public transport only came about because of the hard work of the panel and the standards they helped set out.

But following the various spending reviews, its been recommended DiPTAC be abolished.  I believe this to be wrong.  So I’ve been reading the consultation and I’ve got some strong thoughts and fears.

My first fear is that the experience of disabled people is going to be lost.  At the moment, DiPTAC is made up of disabled people and professionals.  However, what changes are made for one disability can negatively affect another.  For example, a lift could mean people who have claustrophobia may be unable to access a building or replacing a receptionist with an intercom could prevent a hearing impaired person from accessing the building unless it had a working loop.  On board buses, a wheelchair space and priority seating could mean that someone might have nowhere to sit with their guide dog.  Its vital that when making changes, every type of disability is considered and consulted with – and not lip service – proper consultation.

My second fear is that because such experience incurs expenses and costs to bring together and discuss, this will be used as an reason not to use face to face consultation or there could be no more than one meeting with a few people who may be based local to the department.  Recently, the Department for Transport were convening a meeting with just a few organisations about what disabled people wanted from public transport in the future.  They did not go to consultation as it was another department’s white paper.  However, this meant that a lot of voices were not heard and there is a strong risk that this could be the case again in the future on much more serious issues.

My third and final fear is that disabled people will not be made aware of legislative changes properly because there is a lack of pressure from within for the department to ensure they are targeting the right people in the right manner for information, views and consultation.  It might be that the department would commit to doing so, but should they fail to properly consult and carry out an Equality Impact Assessment, it is down to the public to take the department to court.  In the mean time, any changes carried out in law could have already had a negative affect on disabled people and at worst, could mean that disabled people are finding themselves unable to access public transport.

So, it is vital that you respond to this consultation.  I will not tell you how to respond – this is up to you.  But I implore you to consider carefully please the needs of not just yourself but those with other disabilities.  Share the word.  Ask your local council transportation department if they have responded.  I will also be responding in a personal capacity and I hope to share my views on here in due course.

The consultation ends in 14 weeks but you should consider your answers now.  If you want to discuss it with others, log on to twitter and use the hashtag #DPTAC.  But most of all – please tell others.

Consultation

The space-time-wedding band continuum

I hate waking up once I’m in either a good sleep or a semi good sleep but very warm.  However, waking up and seeing :44 on my clock made me think “Oh crikes!” (Not strictly true but you know, universal rating of a blog post), you can imagine the nice surprise when my brain clocks (clocks, get it?!) the great big red 5 next to it – a whole 30 minutes left to doze!

From there, my morning descended.  My towel for my shower was cold and unwelcoming, the wheelchair covered in cat hair thanks to the resident mog.  I had to replace the head on my toothbrush because it was covered in blonds strands of Monkey hair.

I usually go on the motto of “if I’m having to suffer I’d prefer not to go through it alone” but frankly, MBW would be pretty hacked off at getting up after a night with Nuzzle and Scratch playing “how much sleep can we deprive Mummy of”.  So I got on with it.  Heating on (sorry MBW), towel warmed – shower, drip dry, teeth brushed, spray odorant (wet crip) on to my towel, beard fresher on to the wheelchair – I’m good to go provided I’m visiting a naturist reserve.

WP_000090I find my clothing with little problems, making a mental note to get more trousers in for dry cleaning and remembering to grab my work pass.  Lunch out the fridge, glance down and where the Fallugian protestor is my wedding ring?”

I wheel into the bedroom and hunt through yesterdays trousers, turning up only a little red round lego light brick (which I have put back in my ring pocket on my cargo trousers – do not let me forget) and a Trading Standards Buy With Confidence trolley coinage thing.  Crumbs. 

I dash into the bathroom, not spying it amongst the wealth of toothbrushes, toothbrush heads, toiletries and whatever the heck that sticky stuff is on the base of the mirror – I don’t want to know, its blue, its gooey and frankly looks a little like it could be a new life form but I do not want to know right now it is 07:15 and I am running out of time and my taxi will be here in a minute and I want to go out the door looking like I might actually be married god help the woman who is married to this one.

009_pooh_thoughtful_spot-1-In instances where you have lost something, you should consider what Winnie the Pooh might do in this instance.  Find a nice place to call your thinking spot.  A pot of honey to help lubricate the cranial juices.  Relax to allow your self to cast your mind back and…

The bloody cat has got it.  She’s located it on the kitchen windowsill, where I put it last night to wash up and is playing with it. I dash in hissing at her to bugger off.  On the one morning when hissing should work, she ignores me and nudges it on to the kitchen side (remind me to disinfect beside the sink) and along as I now have to stand for a moment and wobble towards her.  She looks up – I swear she winks at me – giving it one last kick towards the gap between the cooker and the side, it turning up on to the outer edge and rolling, rolling, rolling…

it rolls to the edge and stops.   No body breathe.  The cat, guessing her nine lives could be cut down rapidly, makes a brisk exit towards a hiding place I have yet to discover.  I grab at the ring, shoving it on to the correct finger and therefore confirm my place in this wedlock as the husband.

I shove my lunch in my bag, grab keys, pass, phones and laptop and leave, returning only for my coat and shoes.

The education quandary

I’m always looking to further myself and learn.  I believe its part of life.  Many things are left for me to learn…

Apparently sharing is one of them.  This came about because of an acquaintance of mine called Sheila.  Allow me to explain.

Sheila told on a Social Micro-Blogging site about how she had seen a friends house that was adapted to enable someone to live independently – sinks you can wheel under, wet room, flat access, laminate flooring.  So I told her I had all of these toys… and they are all mine.  MBW told me off about this and said I had to learn to share my toys.  Sheila agreed.

Then I got a new wheelchair and Sheila admired it.  I warned Sheila that if I were to see her, she could have a little go, but I am a little possessive over my new toy and I might not let it be anything more than a little go.  Sheila told me I need to learn to share.  MBW agreed.

Now I have got my new laptop.  My Grandmother, when I told her, asked if I was sharing it with MBW.  I explained I was… sometimes.  A little bit.  Once a week. Month. Jupiter Lunar Eclipse.  My Grandmother told me that I need to learn to share.  MBW agreed.  I’ve not told Sheila about this.

So far, what have I learnt?  Well, I suspect MBW and Sheila are in cahoots for one thing.  This is all too similar for my liking.  When pushed on it, both Sheila and MBW seem to laugh.

I explained all of this to my colleague at work.  He wasn’t sympathetic, telling me that one person telling me something is opinion, two people telling me the same is coincidence, but three is that there could be something there.  I think he’s right…

I think I need to… umm… help people by… not telling them about my toys.

Yeah.  That’s the one. 

MBW thinks I’m wrong.  I’m not telling Sheila or my Grandmother.

Living on an inert gas phenomenon

I’ve been living with my new Sunrise Xenon for about a week now, having taken delivery on Tuesday.  It is a complete change from my last chair, a Sunrise Q2, which had a 100 degree footrest angle and weighed in at about 10kg.  By contrast, I’m now weighing in at little under 9kg and with a 92 degree footrest.

xenon-logoI’ll start with some basics about the Xenon.  It’s green – a nice, dark green – with 24 inch rims on the back and soft-roll 4 inch on the front.  The seat is 40cm by 40 cm and on a tilt back, nesting me into the angle adjustable back.  I’ve also got an auto folding foot plate.

There is a definite difference in this chair to other chairs – its very well balanced for such a short chair.

frogleglogoI have got some major differences to the previous chair that make a huge difference though.

The first is the Frog Leg suspension, which, coupled to the 4 inch soft roll wheels, mean that I am not feeling every single lump and bump any more.  I like them a lot and they were worth the investment.

Secondly, I have got a lot of pockets – 3 to be exact but considering most chairs have no way to store anything around them, this is a major plus.  One of the pockets is locked under the cushion which offers a secure storage point for things like my wallet or a Double Decker.

xenon-pocketI am no longer seated on vinyl but instead on a Visco memory foam cushion, which is offering my derriere previously unknown levels of comfort.   Actually, in truth, its nice for my rear end to not be sweltering away and it is complimented by the vented upholstery on the back as well.  On the end of the upholstery are the other two pockets.

xenon-brakeThere are other useful bits too – the fold down handles prevent someone from helping me without first asking if I need or want help.  The wheels have a simple change camber, meaning I can switch from 4 degree to 0 degree with the useful tools, supplied.  The brakes sit neatly beneath the under frame to prevent interfering with a side transfer.

As a chair goes, this one is light enough for me to push myself uphill.  That, for someone with a muscle disease, takes real effort.  It is smooth and will roll with minimal effort.  I’ve already taken it on a few trains with some success – its been welcomed by taxi drivers so far too.  It looks smart, I feel comfortable and I trust it not to do something silly like tip back randomly.

The downside is that I’m afraid to get it mucky or the hand rims scratched.

Formulation of a new methodology implementation

To say I am a little scared, apprehensive and worried is fair, on this situation. Many times previous in this blog, I’ve compared a new wheelchair to a new pair of legs, this continued choice in mobility being preferred over the options open or should I say singular option open to me – that being electrical propulsion.

EPIOC. Electrically Powered Indoor/Outdoor Chair. Although one wonders how they can be limited to indoors, the outdoor limited chairs so big I couldn’t imagine fitting them in my house. Digressions, procrastinating actually here. Mostly because I’m still having the odd doubt.

Someone said on twitter recently during a #hashtag conversation called #whilstdisabled that independence means sometimes asking for help, which is something I’ve always been reluctant to do. One thing that did bothering me is although this chair will improve my own general mobility, it will mean relearning all my tricks. Tricks like kerb jumping, train dismount, climbing steps. Its like going from freerunning to crawling again. This old dog will be learning old tricks again…

Plus side will be a severe amount of comfort and mobility around tight spaces. I’m looking forward to the FrogLegg Suspension on the front. Fold down handles. Breathing, comfortable fabric. The pros far outweigh the cons.

I suspect its the Old Dog in me, trying to stop change. I have a milestone coming up too which I’m also apprehensive about but I can’t stop that one. So the Old Dog can stay in his basket.

Because change is happening. Tomorrow at 09:30.