Saturday, 23 August 2014

things that are unfair #1

The social model of disability holds that a disability is located not in the individual, but created by the barriers in society that have the effect of excluding that individual from taking part, and it is the responsibility of society to minimise these barriers, dismantling them entirely where possible.

But it seems there are limits.  

We live on a bus route, and I don't remember the last time I saw a bus on that route that was not wheelchair accessible.  Sounds great, right?  But what about when the one wheelchair space on that bus is already occupied by a wheelchair user?  If you don't use a wheelchair, you're fine - there's what, fifty seats, something like that?  Just because one is occupied, no matter, you sit on one of the other forty nine.  But if you are (in effect) waiting for a bus with a single seat, and someone else is already sitting there, you're buggered.  You can't get on that bus.

Should buses be required to be representational of the population?  Proportional representation of wheelchair spaces, seats with plenty of leg room for people with other mobility issues and so on in relation to ordinary people who can just get on the bus and sit on a seat?

Bristol City Council subscribes to the social model, and regulates local transport, including buses.  According to this model Smiler isn't disabled by his need for a wheelchair, but by the barriers created by society - in this case, the limited number of spaces on the bus for a wheelchair.

So does this mean Bristol City Council is disabling my son?

I don't have an answer, I don't have a wonderful solution, I'm just asking the question.


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Friday, 8 August 2014

Special Shapes Launch {Bristol Balloon Fiesta}

Fancy new Smurf balloon!

The Up balloon!  Not it's proper name, but that's what my lot called it, and they weren't the only ones!  A bit of a crafty 'special shape' - it's actually an ordinary shape covered in shaped vents which gave the impression of a massive bunch of balloons lifting the basket

The lightbulb - probably one of the more easy to make and fly than a lot of the other special shapes, but they still get points for joining in

A new daisy balloon - brought over from the States according to the announcement over the PA - a very special shape, and one of our new favourites.

Miss Daisy was the last special shape to launch, flying off with a cheeky wink

After the special shapes launch there was a wait of a couple of hours before the nightglow...

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an afternoon at the Bristol Balloon Fiesta

Yesterday was the first day of the four day long Bristol International Balloon Fiesta, and the skies looked promising.

 A Lynx helicopter dropped by, landing in the arena - not really Smiler's thing but both Noah and Petal took a turn sitting in the pilot's seat.

Smiler decided he was going to stay in his chair, under his blanket.  We'd brought blankets because we were planning to stay for the night glow and it can get chilly, but sometimes with Smiler you have to choose your battles, and this one wasn't worth fighting!

Petal and Noah - don't ask me what they were up to, I have no clue.  Absolutely none.

Snacktime, courtesy of the Seed Pantry - believe it or not, the kids were full, and this all ended up being packed away again - oh well, perfect treat for another picnic!

I've spilt this up a bit because of all the photos, but the special shapes launch and the night glow coming soon...

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word of the week

A difficult week in the abstract household, for all sorts of reasons, but I try and focus on the positives for this.  Not so much a summing up of this week as an aspiration for the next few, but my Word of the Week this time round is

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focus (ˈfəʊkəs)
npl -cuses or -ci (-saɪ; -kaɪ; -kiː)
1. (General Physics) a point of convergence of light or other electromagnetic radiation, particles, sound waves, etc, or a point from which they appear to diverge
2. (General Physics) another name for focal point1focal length
3. (General Physics) optics the state of an optical image when it is distinct and clearly defined or the state of an instrument producing this image: the picture is in focusthe telescope is out of focus.
4. a point upon which attention, activity, etc, is directed or concentrated
5. (Mathematics) geometry a fixed reference point on the concave side of a conic section, used when defining its eccentricity
6. (Geological Science) the point beneath the earth's surface at which an earthquake or underground nuclear explosion originates. Compare epicentre
7. (Pathology) pathol the main site of an infection or a localized region of diseased tissue
vb-cuses-cusing-cused-cusses-cussing or -cussed
8. (General Physics) to bring or come to a focus or into focus
9. (often foll by: on) to fix attention (on); concentrate
[C17: via New Latin from Latin: hearth, fireplace]
ˈfocusable adj ˈfocuser n

Sourced here

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Focus on the important things, let go of those that don't matter.
Focus on looking forward, resist looking back.
Focus on the things that go right, forget about the others.

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The Reading Residence

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Wednesday, 6 August 2014

The B&W Photography Project :: MShed - by the water in Bristol

Rediscovered some of my first experiments with monochrome photography and wanted to share ...

Instantly recognisable to anyone who has visited the Harbourside, these four electric cranes are left from the original fleet of more than forty that were used to offload the heavy cargo from the ships from the 1950's through to 1975.  Now restored to working order, they form part of the permanent exhibition at Mshed.

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Linking up to
The B&W Photography Project

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Monday, 4 August 2014

the secret life of a child and a wheelchair

"If you don't stop messing about then I'm going to buy you a chair like that so you won't have a choice.  I expect he's there because he was naughty too" says a woman walking past Smiler and I to her six (ish) year old child.

I have to confess, I didn't challenge her.  She'd gone past, neither Smiler nor Petal had heard, and some days I am just not up to educating someone who (in all likelihood) knew she was lying to her child and couldn't care less.  

But I wondered.  Did she mean he'd done something unacceptable in a past life, and his disabilities are some kind of revenge of the gods, punishment for past transgressions?  Or that he'd refused to eat his breakfast this morning and I was establishing dominance by refusing to let him walk?  She clearly viewed Smiler's wheelchair as a containment device, a prison of sorts - but this isn't true.

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Smiler uses a wheelchair - not all the time, but if we're out of the house and he isn't sitting in it then he'll usually be pushing it (which provides him with a bit of stability), or else one of us is pushing it and he's holding the other's hand.  Mr Manley is lanky enough that he will often push with one hand, so that he can walk almost abreast of our son, chatting as they go.

• • • • •

This is Smiler's fourth wheelchair - at least his fourth that has has that typical shape, big back wheels, handles on the back, foot plates.  During the assessment for the first of these I was told they wouldn't be supplying this style - their preference was for an 'attendant' chair, with little back wheels.  Their position was that Smiler's understanding and coordination were not at a level where he would be able to make use of the wheels to propel himself.  I stated and explained our preference, complete with relevent photocopied research. I quoted legislation and NHS rhetoric regarding opportunities for independence.  It was when I started enquiring about the cost difference between the two options that the mood in the room suddenly changed, and it was agreed that big wheels would be ordered for this chair, but this did not mean the same decision would be made at the next assessment, for the next chair.  I was satisfied - it was the lack of opportunity that I was railing against, knowing that without the chance to develop that coordination with the motivation of independent mobility that it was entirely possible Smiler wouldn't.

Smiler soon demonstrated I was right to have faith in his determination - with sufficient motivation of course.  Within a month of the chair being delivered I lost him in a supermarket - not only did he scoot away down the aisle at a fair speed (and quietly) he then managed to navigate the corner independently - a fluke perhaps, but he still did it.  I'll never forget the emotional confusion of being terrified that I didn't know where he was mixed with the guilt of having taken my eyes off of him and the pride that he'd managed to do it - all overlaid with mild hysteria at the thought of how this was the first time I'd lost any of the kids and it was this one - the one who couldn't walk.

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these days

We are lucky enough to live close to a fair size supermarket and a new local library, but even though they are a less than ten minute walk away, we wouldn't attempt it without the chair.  Although on a good day, if time is not a factor, Smiler could potentially walk there, he wouldn't be able to make it back, so there seems little point!  Our thinking is more likely to be that we'll push him there, he can potter around the library holding hands, then back in the chair for the walk home.  The same if we needed some shopping - best to push him both ways and perhaps a wander around in the middle if he is so inclined.

Yes, it can be a pain in the proverbial.  We've been unable to get on buses because the (only) wheelchair space is occupied.  Lots of activities have to be brought to Smiler as he cannot get to them.  Although we try to do as much 'normal' family stuff as we can, sometimes the logistics defeat us.  Not often, but sometimes.  If we can find a way around (or over, or under) then we take it.

Sometimes we don't take the chair with it us - if we're going in the car somewhere maybe.  His glasses needed adjusting last week (they actually need adjusting every week) so we jumped in the car and went to the optician.  Smiler held my hand from the car (parked in an accessible space), walked to the optician where he sat (and giggled as I spun him around) on the office chair (oh the fun!), once his glasses had been reshaped to fit a little better again we walked back to the car.

Smiler falls over upwards of ten times every day (yes really) and I don't mean he trips or stumbles - I mean he ends up either face first or flat on his back on the floor.  Every two or three months this results in some injury to a foot or ankle or knee or hip to the point that he can't weightbear, and spends a week or two on wheels, needing to be lifted by us to transfer from his car seat into his wheelchair and so on.  The balance, coordination and concentration required to use crutches are simply beyond him, so without his chair Smiler would potentially be stuck in bed, unless lifted and carried around -  easier said than done!

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It took a long time to get Smiler on his feet, and we don't know how long it will last.  He has scoliosis (curvature of the spine) which may well deteriorate during adolescence, necessitating major spinal surgery.  Smiler's feet and ankles require support from splints, insoles and orthotic supportive footwear - as he has growth spurts these weak joints may requite more support, or surgery - potentially serial casting.  Smiler is hypermobile, which means in effect that even those joints that are properly formed (which rules out his hips, ankles, jaw, wrists and elbows) are 'loose', and vulnerable to bending too far and dislocating, another threat to his walking.  It's possible that once fully grown Smiler's ankles, knees and his will simply not be able to take his weight, so he'd be unable to walk or stand. He had major orthopaedic surgery back in 2009, and when the surgeon looks at every set of new xrays he uses words like 'precarious'.  These aren't distant possibilities, akin to winning the jackpot on the national lottery or being hit by a meteor.  No one will ever give you odds but the combination of these mean that it is more likely than not that by adulthood Smiler will be in his chair whenever he is out of the house.  I'm hoping he'll still be able to move independently indoors - he learned to get around himself when he was almost five, which made his life much less frustrating, so even if he reverts to his old bunny hop/scraping knees style of movement I know this will have a massive impact on his ability to cope with daily life.  But if he can't - well, then we'll deal with it.

It must look odd, one parent pushing an empty wheelchair while another holds hands with a (very nearly almost) teenager, but you know what?  Stare all you want - even if he can only walk ten steps before he needs to get back in, that's fine with me.  And if ... when the time comes that he doesn't walk, that wheelchair will enable him to get out of the house, go into shops, visit a park - far from a punishment, far from a prison, it will be his freedom.

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Saturday, 2 August 2014

picking blackberries and looking on the bright side

It's a lovely sunny day at the beginning of August, the kids need to burn off some energy, the obvious solution was to go blackberry picking!

Hats for protection from the sun, long sleeves and trousers for protection from the prickles, and we were off.

 One of the great advantages of having a dog is that you get to scope out the bushes beforehand, so you know where you need to go for the best berries!

Secret to a successful blackberry picking session - take twice as many boxes as you think you'll need.  Better to bring back empty boxes than curse yourself when you have to walk away from bushes dripping with luscious fruit.

Bag full of boxes full of blackberries, and we're off home.  Energy used up, sunshine enjoyed, jam and cakes being planned.

Oh dear.
Unexpected thunderstorm.

Didn't seem to stop anyone from enjoying the walk home - even though we were all soaked to the skin, the kids carried on messing around and didn't seem bothered by the torrential rain!

Moral of the story :: nobody expects the Spanish inquisition!

(Go on, name the film...)

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linking up with

Country Kids from Coombe Mill Family Farm Holidays Cornwall

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