Ugh

If you are a manual wheelchair user, you will appreciate this. You will understand frustrations.

My hands are my propulsion to my wheels. No, my little phone, not my eureka, my wheels. Don’t try to correct me. My hands will meet with the rim and sometimes tyres as they take each revolution. My arms and shirt sleeves will also sometimes meet.

The tyres meet the floor. The floor provides friction. The friction means I move.

This is all what I consider to be essential process. If you are playing Buzz Word Bingo, you count essential process as one.

Letting your animal use the pavement as a toilet is not essential process. You and many before you might have been allowing this to go on for many years. Those considerate of you (and I thank you for this) will pick up after your pet. I appreciate that.

The rest of you owe me a new shirt. Club together very quickly and ask me how you can get it to me.

Mean time, I’m rather annoyed. It was a nice white shirt. I’m going to put the wheels through the hot shower…

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Pincer like movement

Nuzzle and Scratch are getting a little bit bigger. No hair yet, but better body control…

To pick them up is difficult, takes rebalancing of my body at each turn. Usually MBW will pick the girls up, one by one, and hold them with me so they get that standing up cuddle, sat on my hip, that they do so love.

But this weekend, they and I managed, where I was leant into a corner, something really special.

First, they stand up against my leg and reach out up. As they do, I lift them just below their elbow until they grip around my leg with their thighs. I then move my hands to their arm pits, hold for a moment and then with all the strength I can muster lift again until they are gripping around my thigh. Next step is to get one hand under their bum and lift to a hold, them with arms around me, head on my chest, legs gripped tight. Lowering is under the arms until they are standing.

It feels fantastic. The girls love the moment that they get of an independent cuddle. I enjoy a moment I achieve myself. I don’t know how long I’ll be able to do this for even. I know I can’t pick up Monkey (who happily takes the stood-on-a-chair subsititute) and although I feel bad about that for her, I know she knows why.

The point of this post though is to record the feelings – happiness, achievement, fulfilment, joy, enjoyment, expressions of love – all those bits that can get lost in the memories of time. I didn’t think I would be able to do this act of picking up the girls like this beyond their first few weeks, something I really enjoyed, so to get a second shot with my own little ones is a true luxury… The only other time I will get the chance will be (whispering now) having another or borrowing someone elses small baby for a quick cuddle.

I should also remind myself though: Monkey really doesn’t mind the chair cuddles, so I shouldn’t beat myself up about not being able to pick her up.

So that’s this mornings thoughts.
Time for work…

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Routine

I’m going to describe this run… In only the way I can.

I start on the train. Brake click twice. Tuck bag straps. Sleeves tight, taut. Nothing should be available to be snagged, nature or street furniture or chair. Deep breath. Those doors are going to open in a moment and people who surround me will stream out, not that I notice numbers. Ramp down, greet colleague, left right Lift (reverse in). Descend whilst ensuring music is adequate – Deadmou5 ‘Strobe’ is good. Out and forward 5 metres, left and up ramp, drop speed to 4, forward 3 m, left onto concourse, where the flooring changes to a polished tile that in the wet can cost you vital acceleration and braking distance, as you not so much approach as power towards the barrier, praying for an opening that means as you hit the top of the ramp the jump down the other side takes you up to 7, out and onto the small plaza where people congregate, unaware of the thoroughfare that they impede onto, nor worried about where they flick their cigarette ash. Forward right, skirt right of the tree, aim to head on over the drainage paving and down to the zebra crossing, slow to 2, right, over at 3, left, down past Dominos Pizza to where they queue for a cash point, the pavement narrows but it doesn’t stop them walking two abreast and head on towards me… Which brings me down to the right bend, cruise at 5, run the brake, hard left at the pelican, wait for the Green man, straight across and right, not diagonal else I can’t get onto the pavement… Down now, the big straight. Paving slabs should guide people straight but they meander, unaware as they flick their cigarette ash at hip level of my presence or velocity as I move round them…
I was always trained to move around slow moving traffic, pavement too, but people still panic and wobble about.
Clear morning makes this section a joy, past the first lamp post hitting 6, by the second the pavement dips slightly, accelerate hitting 9, follow the rise out, accelerate hard and roll, guiding the motion now, gentle application of the brakes, bend left at 5, through the bollards, over the carpark exit at 3, jump up the kerb and cruise, maintaining the speed to the doors, entering and taking the lift, speed now limited to 3 for the internal journey to my desk.
Its taken 30 minutes to write about this, the technicalities difficult to express, as I am not paying attention to my speeds, instead acutely aware of those behind, those in front and to the sides, aware of those who give way and must remember to thank, because I will repeat this 3 minute 47 second experience again tomorrow.
And I’ll just hope that the conditions will be right for another perfect run, that walk to work.

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What was the Incident

I sat there, in the doorway of the train as we rolled through the suburbs of Clacton heading for the terminus.  In the opposite doorway, a mother set up a (rather large) pushchair before getting her young child from her husband who was sat just slightly further down the carriage.  Very quickly she was joined by her son, who I’d have put at about 7 or 8.

“Hello” he said.

“Hello,” I replied.  I don’t make a habit of talking to people at the best of times, but I’m sat in the doorway and I only have headset in my ear…

“Are your brakes good?” He asked, unashamedly.

I didn’t really get how to respond to this.  “Yes.” I replied.  Its not a question I often get asked.

“Are they really good?”

Brake conversation with a kid… ok – this could be a lot worse.  “They’re ok – disc brakes would be better.”

“Why haven’t you got disc brakes?”

“Because they require setting up and calibrating, but these wheels have to come off.”  I don’t think he actually wants to know but I might as well humour him.  His Mum is looking slightly embarrassed.

“Oh,” he said, now looking like he was thinking.  “What was the incident?”

Now its my turn to think…

“You know, why you’re in that…”

Ah.  Yes.  The question of “why are you in a wheelchair”… but its Friday.  I’m in a reasonable mood and Mum looks slightly embarrassed… so I reply: “There wasn’t an incident.”

Mum begins to apologise, rather profusely.  “He’s 8 – I’m getting all the questions!  I’m so sorry.” She begins to chide him, telling him that you can’t just ask…

“No, its fine” I reply to his mum.  I looked him square on. “It doesn’t have to be an incident – something gone wrong.  Sometimes you can just be.  Its like why you have blond hair or blue or green eyes.  Sometimes you just are and I am.”

He nods, getting it.  “I have blue-green eyes” he said proudly.  His mum laughs at this, I think more relieved that this hasn’t resulted in an ear bashing.  We’re pulling into the platform now.  He looks at me.  “So its all ok?”

“Yes.  You don’t learn without asking.” I reply to both him and his mum.  The doors bleep to announce our arrival.  I roll back and out the train, to his amazement and joy, as I disappear off down the platform…

… I think I probably respected him more for having the guts to ask.

A Friday experience

I finally feel ready to write something about my experience on Friday, but only in part.

A siren blasted my ear. Literally, like it were announcing my intention for the next 5 minutes. A beacon strobed in my face to alert those severely hearing impaired enough that they can’t recieve the audio alarm that will be the background song to the audacious manauvure that I want to and need to perform.

The ritual of climbing the stairs has largely been stolen, replaced with a usually smooth, not always silent but always dignified ride on an elevator of some sort, even if that elevation device resembles something off the front of a forked lift truck, a pallet placed on its forks to act as the platform, albeit less stable now than an actual forked lift, weight saved to give more energy to lift. But I digress, because today my movements to ascend are not as secret, not protected by a surrounding wall, because to climb those stairs, I have to use a platform that climbs up the stairs for me.

Its black, saving me from the usual medical beige that afflicts any device designed to help you fit in. But that’s not the issue… Nor is it that the device is shielded from the public using railings… But it’s the fact that I have to be accompanied by someone to do this. I have to have the worlds loudest siren bleating in my ear from its place next to the left apparatus whilst I have an epileptic fit from the strob beacon placed at eye level, announcing to the world: wheelchair user wants to climb the stairs!

I am not allowed to do this alone. Someone, somewhere, decided that there has to be someone on hand always to do the pressing of the buttons. The staff are friendly, many of whom I know professionally and some even personally and they make this as bearable as possible… but I still feel robbed. Pressing that button means for a few minutes during the charade, the musical light show that is the simple task of leaving the station, whilst fellow commuters stare on their own ways home (the concept of this appearing different and worth watching)… Or the other extreme where they look at their shoes and shuffle past, but pressing a seemingly insignificant button puts me in control. It lets me do this myself.

And that makes all the difference, for me. The control of taking myself up stairs. It would be nice if they put the siren and beacon up higher so I didn’t have to get a free hearing impairment and vision blackspots with each use (a prize if you like), your own souvenir of a job done, but not done well…

But the overall thing, is that I have to use this route because builders have blocked off the usually accessible entrance for a few months to do works and this is the solution to get out of the station to my car. Actually not strictly true, as I could choose to wheel down a steep hill, under the road bridge and up a steep hill the other side but for that I need assistance… catch 22 if I ever saw one.

I leave, feeling somewhat conspicuous… and although it worked, I can’t help but feel it could have been done better… Or at least with some form of dignity… But then I’m just grateful it wasn’t a stair creeper from Clapham Juntion on this occassion. I might write that up another day.
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Late circadium cycle communications

MBW and I were just discussing about how I buy coffee in the morning before getting my train, and it went something like:

“You need a cup holder on your chair…” said MBW thoughtfully…

“And a mobile phone holder… and a camera mount for my video camera?” I asked hopefully.

“Don’t be silly, you’d look like a dalek.” She retorted.

“Actually, lasers would be really cool… and a spinny tank gun thing. And RADAR!”

MBW looked at me weirdly.

I also want integrated lights on the front that I can use as my “Angry Lights” and light blue hand rims and… TRACKS!

I want a tank.

New Chair

My next chair...

Yeah, too much time on my hands with the writers block thing.

McNulty report and me: What does it mean?

So much has been said about McNulty, but much of it appears high level – and frankly, too long, dull and complicated to make any sense.  Or is it?  The summary is 77 pages long and features very few pictures (something that means I can’t read it to the children as a bedtime story) but there are some important items in there.  I’ve focused on two of them here.

Starting at the obvious:

This is a plan A – and plan B would be to close lines

Worryingly, the lines at risk of closure are rural lines that support disabled people in travelling to areas that are not served well by bus.  But there is a bigger impact – it means that journeys that are made on core routes – the main lines – won’t take place if the journey continuation on a rural line can’t take place.  Social cost would be astronomical and the environmental cost would be huge with additional vehicles on the road to replace those rail journeys.

But there’s something else that leapt out at me:

All trains should be DOO – Driver Only Operation

First of all, what happens to all those guards?  I’ll let the unions go nuts over that suggestion.  But also – what happens when a disabled person is on a train and needs to get off? What happens when they need assistance?  Has he thought this through?  I doubt it.  This will affect some services within London where guards are rare, but in more rural areas, where platforms curve and tickets need to be sold on train, this will be a huge problem.

I’m writing something at the moment about the full response – but these are two issues that have stood out.

So – this has to be the only plan but mustn’t be closed to consultation and closed discussion with those that it will affect – the customers.  Because ultimately, this will impact on people who pay for the railways in the first place.

The Fatigue Theory

A quick missive… Nuzzle and Scratch are teething. It is quite difficult because they are both quite a bit larger than Monkey was, I can’t pick them up as easily. It’s making a bit of hard work for MBW, too, as she is dealing with them a lot of the time whilst I sit and try to soothe them… The annoying thing is that right now I’m finding it difficult to lift anything heavier than a dinner plate, so it’s making me about as useful as a chocolate tea pot.

It sucks and this was just a rant post. Sometimes my days are more wheel world than others.