Express Yourself

I thought I'd leave it a week or so before posting about my new NHS wheelchair. You know, the one that took three years getting to me.




Well, it works and boy has it changed things.

I confess that at first I felt a little unsure. The way you feel when you've been trapped in a really bad relationship and aren't convinced you can love again. That's how it was with my scooter. I suddenly found myself ignoring all its faults...dodgy suspension, creaks, impossibly long reach to handlebars, sluggish, poor battery life (I could go on)and found myself feeling nostalgic.

I fooled myself into believing that me and 'scoot' had had a wonderful time and, lump in throat, I found it hard to look at her (she suddenly aquired a gender too) as she sat, forlorn, in the yard. All those trips to the High Street to get compost. How would I manage that in a wheelchair? More than two bags of shopping. Now impossible.

Then a voice said: "Get real!" and my eyes opened. I was staring at a rusty heap of junk that had been impossible to manouvre in shops and had frankly done nothing for my image, being maroon, which is my most hated colour. It had only ever got me as far as the High Street, which I now confess to trying to avoid on a regular basis. Which means avoiding exhausting struggles with large amounts of shopping, and compost. I have better things to do!

So with my eyes suddenly opened, I found that leaving my scooter out in the rain was exactly what I wanted to do. Ah, revenge! (with a plastic cover, just in case I sell it on ebay).

What I love most about my wheelchair is the newfound and totally unexpected ability to express yourself. In a power chair with such minutely sensitive controls that you could almost control it with your breath I have found myself

• Having a strop. Yes, storming off even, turning on my heel and whooshing down the street

• Wandering aimlessly. My son went into a newsagents I couldn't access due to a large step. So I was left to my own devices whilst he spent the best part of 20 minutes choosing sweets. I found myself round the corner meandering in a courtyard full of bedding plants, pootling up and down puzzling over the bargain that was:
  

"Buy one for £1.49, two for £3!!!!"

• Going for walks. My son and I have taken to going on an evening stroll, and we've had ice cream in the park. This feels far more leisurely now that I have some options in between fast (ish) and sloooooow. The nuances offered by those extra little dots on the speed indicator mean everything.

• I have twirled. In delight. Round and round in the playground, because I could, and because I feel so funky these days. And the skater friends of my son were probably checking out my 900 (two 360s and a 180 for the uninitiated) and wishing they could. In your dreams.
  

My wheelchair is black and silver. It goes with everything I wear, rather than nothing. And more importantly it feels like part of me.

Gardening...Still Without Moving

Part Two

I'll be honest and admit that what I needed was something far more soulful, more engaging and rewarding. And because I don't leave the house much, I looked to my garden to provide. And this is the strange thing...why the garden? I was never into gardening before I became ill, so why now, especially now that I can't physically do anything?

I don't know. Well, perhaps I do. I think it has a lot to do with spaces. Having my own space after so many years of being stifled. Needing a space to escape the overwhelming pressure in my life. Not knowing how to acheive this, but wanting desperately to find out.

Doing up a garden when you can't lift a watering can is a challenge. It requires above all patience during the many long delays that occur when funds dry up and your health fluctuates. I can only afford to get my tattooed gardener in for heavy work about twice a year, after saving furiously. It is incredibly important to me that my son and I have a pleasant environment in a really very unpleasant neck of the woods. Yes we can hear vandals and car theives from our house, but as long as what I look at out of the window is beautiful, I can cope better.

So. Phase One was to cut the hedges down from 12 foot to about nine (across as well as high it seemed) back in May 2007 and spend the best part of a year doing nothing else, though my son did plant a herb wheel. I was recovering from my relationship breaking down and had a pretty bad relapse with my health. We got out and about looking at other gardens, but largely I saved up some money for Phase Two.

We hired a man with a mini digger for £100 and had the whole garden rotivated. It was the only way. It was choked with brambles and terrible overgrown old shrubs. Then everything stopped again for months. I saved up again and spent many hours dreaming of how I wanted the garden to be, and then we were able to put in Phase Three:

A shed and some decking. Yes, yes I know. Decking is passe. Common. Horrid. But it's also great if you can't move about much. It suppresses weeds and gives you a cheap and instant sun trap (if you do your homework and work out where the sun lies in the late afternoon).



Aaagh, it looks ghastly in this picture! And if I'd stopped here, I'd have committed a terrible crime all of my own. But that's the stage we were at for quite a while. We're now into last summer. There were no plants to look at, other than what we'd grown in handbags and filing cabinets. And no path. But we sat in the sun and I formulated Phase Four.

A path. A pond. Some paint. Raised beds. And this is where things really take off. Once the path was laid and the trellis painted and the hole dug, my graph paper design started to take on a reality.

Gardening Without Moving

Part One

Falling in love is often unexpected. Even more so when a former plant witherer falls in love with gardening...but can't actually garden.

Well, I'd like to qualify that statement for starters because since I ejected the word can't from my vocabulary I've surprised myself with the number of things I actually can do.

Gardening without moving is about time, patience, imagination and design. It is not about digging, sweating and swearing. I suppose, ill health aside, I'm more into the design side of things, and always was. So not being able to move much doesn't stop me from enjoying my new hobby.

We've lived here for over two years now. And as soon as I saw the garden I knew I had to do something about it. What started as an urge to create a space for myself and my son has become a true love. And yet, we're renting! And many people say "What's the point?"



In the past when I have rented I've agreed with this, largely because I had other (and I thought better) things to do. And yet this time, something was different. I suppose time was the largest factor. Months when I couldn't do anything else but watch Gardener's World (the most non-threatening TV there is) or dip into books. Hours and hours just dreaming and researching, learning about plants.

No one had touched 'our' garden for years prior to us moving in and at first you couldn't even tell where it started and where it ended. We discovered a greenhouse after saving up for some serious clearance to be done and things kind of went from there.



We ended up freecycling the old greenhouse as it was beyond my capabilities to repair it, and replaced it. The picture above shows sweet peas, one of my first attempts at growing stuff in year one.



There are of course, varying degrees of committment that can be applied to doing up a garden. On moving here, I could have contented myself with getting the hedges cut and installing a few tubs of daffs.



But no. Having watched all those experts on TV, and read so many books I felt I wanted to do more...

No and A Million Times Again NO

I have the good fortune to live very near one of those Tardis-like corner shops which sell just about anything dating from the 50s to the present day.

With old stock goes old traditions. So it'll be of little surprise to people that trying to convert my local shopkeeper to modern eco-friendly ways is proving a bit of an uphill struggle.

It's not like I go in there banging on about air miles, locally produced eggs, organic fare and whatnot. No, I simply gave up plastic bags a year or so ago.

The reason for this is twofold. One: I got sick of seeing them caught in the trees in my neighbourhood. Two: A village in Devon has completely banned plastic bags with no ill effects whatsoever. People can still get their shopping home, and sea creatures and birds have a few less bags threatening a long slow death from starvation because their stomachs are clogged or because they become tethered and can't fly any more. A whopping 13 billion plastic bags are used each year. And according to Pollution Issues, only 12 per cent of people who've bought a reusable shopping bag actually use them! Actually that doesn't surprise me, given the celebrity rash of I'm Not a Plastic Bag smugness in 2007. Celebrities and actually giving a shit? I think not.

Three: Oh, there wasn't a three. Well there is now. Three: I read this. Then this. And that did it for me. No more.

So it should be well known by now at my corner shop that I don't do bags. I live only metres away. I can carry a carton of milk or a box of eggs or a newspaper. Even Tampax and bog roll. Really. I'm not bothered about the neighbourhood knowing I have the same bodily functions as everyone else.

So why. Why why why why why do I get the same routine every time I go to my corner shop?

Shopkeeper: "That'll be £3.62 please."

I give him a fiver, he opens the till to get my change. I stack my purchases neatly together on the counter. He looks at my purchases.

Shopkeeper: "You wanna plastic bag?"

Me: "Um no thank you."

Every single time. And lately it's like he's wanted to thrust plastic bags at me, with a sort of mounting urgency.

"Youwannaplasticbag!" he insists.

"Here, take a plastic bag."

Or sometimes just: "Plastic bag!" followed by a fierce gesture at the roll of bags on the counter. He's even started to pack for me on more than one occasion, with an air of desperation. I have to stop him. It leaves me baffled. I wonder why he feels so strongly about his bags, why he wants so badly for me to put my shopping in them. He looks upset every time I don't. They don't carry the shop name. I just don't understand. I worry about him even. Is a plastic bag fixation an early indicator of nervous breakdown? Nah. He just hates wildlife. Maybe he got shat on once by a puffin or something.

Yesterday I actually lost my composure. Remember this has been a face off for a year now. I enter my corner shop secretly smiling these days, knowing that each purchase is going to end in a comedy moment to rival anything on telly. Sure enough:

"That's £2.20. You wanna plastic bag?"

The tension got too much for me. So I laughed, out loud, then shook my head and ran my hands distractedly through my hair.

"No. I. Don't. Want. A. Plastic. Bag."

I said.

Dukes of the Stratosphere...

There have been so very many great pieces of writing, artwork and all manner of posts for BADD this year. I've decided to do a roll (to the left) of my faves so far. Bearing in mind I've read about half the entries. It's been like an intensive session with a Sunday paper. Only much, much better.

My fave find has to be Rae at A Load of Old Squit

Humourous and packing a punch at the same time...

(update) And A Comic Life Indeed...for much the same reason.

Discovering new blogs is one of my favourite aspects of BADD. That and the inyerface writing from all corners of the globe. Still another 100 or so to go...

BADD 2009: I Like A Good Fight

We seem to spend a lot of time, as people with disabilities, fighting.

Fighting can be tiring, energy-sapping. But it can also be invigorating, life-affirming. Not fighting is invariably depressing, because it usually indicates that we have given up. I’ve yet to meet a person with a disability who hasn’t had to fight for something.

We have to fight for things we need, fight prejudice, fight for equality, for recognition, fight family and friends even. Is it so terrible, all this fighting? Some relatives were just made for fighting with after all...

Or is fighting a worthwhile, inspirational even, pastime? I once met a community of artists in Berlin when travelling with a boyfriend just after the Wall came down. We found a squat and although it was achingly hip, there was a decided air of aimlessness about the place. One of the artists revealed, through a haze of joss sticks and other smoke: “Before, we had something to fight, to react against, it was what drove us. But now...”

It's not that the Wall coming down was a bad thing. Of course not. It's just that at that time, and for a good while afterwards I suspect, these artists were in a kind of creative limbo. I’m sure they went on to find new inspiration, new fights to be had, but thinking of them now I wonder how they view ‘the bad old days’.

For us, the one in seven, the bad old days are still very current and it’ll perhaps take something similarly seismic to produce the shift in understanding of disability that we all crave. Only we don’t have an icon of oppression to galvanise us. Our Wall is invisible. We push against it. Sometimes it gives a little. But then it gets patched up with more bureaucracy and more prejudice.

Here’s some rubble at the top of my road:







Nothing remarkable in that you might say. But to me? Well, I’ve half a mind to start bagging it up and selling chunks of it, because it represents a small, but important, victory.

A year ago I wrote to my local council asking them to sort out all manner of issues in my neighbourhood to do with the simple act of Getting Around.

Not so simple, you see, when you have pavement like the surface of the moon to navigate on the way home from school. Or a crossroads so dangerous that your son has to literally stick his neck out into the traffic to see you safely across on your mobility scooter. Then there’s the small, but not insignificant, matter of reaching your own front door.

And this is where the rubble comes in. Until Monday (oh happy coincidence for BADD posting!) I had to take a long and perilous route home, crossing yet more dangerous junctions. Just to reach my front door. A ‘friend’ (make that mother of one of the kids my son goes to school with) once stopped me on my way back home and said: “ Where are you going? I thought you lived that way.” To which I replied, “ I do, but there are no drop kerbs.” She looked at me, looked at my scooter, muttered something about a petition and of course, I heard nothing more about it.

Last week this arrived.





Finally. My NHS wheelchair. It arrived after a three year wait, and the intervention of my MP, a solicitor, then a barrister and finally an impending Judicial Review. Threaten a JR, and it’s amazing what happens. They didn’t want me setting a legal precedent you see. We can’t have everyone locally demonstrating they have a legitimate need for a wheelchair, can we? Though the beauty of this oh so sweet victory is that yes, actually, they can. And they will. And the narrow and hopelessly nonsensical selection criteria which initially blocked me altogether from qualifying for an NHS wheelchair has now got to be changed. Because in the end, I did qualify.

Anyway, not wanting to damage my shiny new power chair, all the more precious for being three years in the waiting, I wrote to my MP. For about the millionth time.

Great chair, thanks, but please help me get my pavements fixed, can’t get about very well, etc etc.

And, gawd bless her no matter how many homes she has, she wrote immediately to Highways. And then, incredibly, Monday happened.

Drop kerbs. To go with my recently achieved H marks at the aforementioned nightmare crossroads: (H marks stop dangerous parking). Now all I need is the pavement resurfacing. Then I’ll be able to get about without excessive and unnecessary restrictions on my movements.

After many years of fighting for disability benefits, for alterations in my home, for basic equipment, for the right to use it unimpeded, I’m almost at the point of not having to fight.

So now what?

There is, of course, the conscious decision not to fight. Which sounds all very Zen and tranquil, but to me also somewhat tranquillised. I’m a big fan of meditation, don’t get me wrong. In fact without meditation I’m sure my internal generator would have blown a gasket years ago. And there are people out there who seem to live without fighting. But I sometimes wonder what drives them. Peace? Surely not. In any case, it's not for me.

Simone de Beauvoir wrote:

“One’s life has value so long as one attributes value to the life of others, by means of love, friendship, indignation and compassion.”

It’s the indignation bit I like.

Have you ever had someone fight your corner, rage on your behalf when perhaps you don't feel like raging yourself? That feels good. And then, when you do recover some fight nothing, surely, nothing is so life-affirming as fighting for someone else, fighting for the truth.

Love and friendship and all that fluffy stuff is all very well, but today (if not every day) I say "Spread a little indignation."