We all know how we feel about being disabled, right? And how it feels to be on the receiving end of disablism. But what happens when we encounter people with whom we both share so much and understand so little?
I met up with two friends recently who have a young son with a learning disability. And their experiences opened my eyes to my own views about being disabled and left me with all sorts of questions.
The thing we most definitely agreed on was how dealing with disability on a daily basis would be a whole lot easier were it not for ‘other people’. As my friend observed: “What I hate most of all is the pity factor. The looks. The crass remarks like: “Oh what a shame,” which I find a truly awful way of looking at my son’s life.”
I got a sense that both of them were thoroughly worn down by the reactions of those around them, which had led to a magnification of very complex feelings around their two-year-old having a disability. I could see that even as they loved and accepted their child, other people kept messing it up for them.
As Lily Allen (and countless before her) said: “It’s not me, it’s everybody else,” and this is perhaps never more true than when you are disabled and on the receiving end of at best ill-conceived notions and at worst downright prejudice.
We sat in a sunny park and swapped stories about being ostracised, rejected and misunderstood as my son took their son off for a walk on the grass. Oh to be a kid and just get on with getting on, as my son seemed able to do with effortless ease. Meanwhile, whilst it was good to talk, I found I was checking myself before speaking, and very heightened to the possibility that I may at any point make an enormous gaffe.
Because whilst I am 100 per cent conversant with my own condition and the experience of being an adult with a disability, I am not the parent of a child with a learning disability. I have no idea what it feels like to be ignored by other mums and dads because my child is ‘different’ (though I can have a guess) or pitied by friends and family. I don’t do the pity thing myself when encountering anyone with a disability. I also understand the additional emotional exhaustion that comes with fending off the tide of crap that society dumps on people with disabilities in a myriad of small ways each and every day. But I have no idea how it feels to be a mother, or a father, burning with anger for a child we so desperately love and want people to understand and accept.
“I feel I have to advocate for him. All the time.” My friend said. And I felt sad that she wasn’t really getting the chance to just go out there and be a Mum, doing Mum things with other Mums because the other Mums have rejected them both.
And I found myself talking too much, taking refuge in my well-formed social model observations and perhaps pontificating a little. It was comfortable ground, more comfortable than asking about their son, asking what he likes or doesn’t like, what makes him laugh or, well, really anything that would help me ‘relate’ and not cause offence, like so many other people do with their thoughtless actions.
He doesn’t speak, so he gets ignored. He is developmentally delayed so he doesn’t run about with kids his age. I was aghast at my own lack of imagination, sitting there in the park on a sunny day and feeling totally inadequate. And what shocked me the most was my realisation that just because I have a disability it doesn’t by any stretch of the imagination make me able to ‘cope’ with someone else’s. The common ground was in being reminded of how very angry I was for the first couple of years of being disabled myself. I saw their exhaustion and defiance and totally related. And in seeing it in someone else, a warning bell sounded.
Exhaustion and defiance are understandable reactions, but could the anger, the chippiness be a little counterproductive? It’s easy to see how after constant rejections at playgroup, in cafes, in the park, at family events even, the resentment would set in.
But, and I was so totally reminded of myself in this, the disablism radar can malfunction as a result. If we are too primed for bad reactions, are we at risk of putting people in the dock before they’ve committed an offence?
True, I felt I didn’t cope brilliantly with meeting their son for the first time and I beat myself up afterwards about not making any sort of meaningful connection with him. And my retrospective thinking became little non-disabled for a second as I chewed it over. “Why should I know how to react? Did they do anything to make the situation easier? I was never great with small kids anyway...”
Gah! I couldn’t believe I was thinking this way. But I was. And it also struck me that just as I was trying to get a measure of the situation, I had potentially been quietly sized up myself. My ‘disability credentials’ were not in question. But my first, and very important, reaction to their son most definitely was. And knowing they were potentially sitting back with their arms folded thinking “Well, let’s see what she does...” I felt the most able-bodied I had for years. Inadequate, slightly uncomfortable, and desperately trying not to say the wrong thing.
And for a lot of people out there who are not disabled, this is what it all boils down to. I’m not saying that ill-treatment and prejudice don’t exist...just that lesser forms of disablism that we could potentially help with are out there. Of course any sort of discomfort with disability needs to be addressed. But perhaps if we could go into more exchanges in the spirit of sharing information and fostering understanding, we would achieve more than we ever will by getting angry and defensive. God knows, it’s taken me years to get rid of the chip on my shoulder. Realising that some people will never understand, some can be helped to understand, and some positively want to understand ultimately means that you don’t stay angry with everyone. And it also means you can focus your energy on people who can, and most probably will, make a difference.
Saturday, 1 May 2010
Friday, 1 January 2010
Thursday, 31 December 2009
What Am I?
Living in a twilight world between the well and the ill I feel not entirely comfortable in either sphere.
Words like recovery, improvement and cure don't sit easily with me. There is no such thing as recovery as we can never recover what we were before illness struck. Illness changes us and it is to be welcomed for doing so. We grow and gain insights that we never had before. Improvement suggests that what went before was in need of enhancement in some way. I don't know. It's certainly an improvement to be using my wheelchair less and driving more in one respect. But was my status as a wheelchair user and public transport regular something that needed 'improving'? I suppose I'll settle for the fact that my health is improved, in some respects. Cure? No such thing. Not with what I've got. I prefer to talk in terms of windows, space, phases, cycles. It makes more sense. Ups and downs. Plateaus, peaks and troughs.
So why am I moaning about improvement, progress, whatever you want to call it? I don't feel so connected with my blogging buddies, because I have been too busy being 'better' to blog regularly. I got a first in a recent OU course and am very proud of the fact that I acheived 92 per cent in the exam. I have pretty much launched a small preserving sideline for friends, family and neighbours and am thinking of doing it on a larger scale. And I've been more involved with my son, making sure we have adventurous excursions and fun together. And in doing all this I've let a world that was supportive, engaging and fun slip through my fingers. Facebook, with all those past acquaintances (only a handful of them actual friends) is dull in comparison. Plus I feel very much in crip corner on there.
Put me in a group setting for people with my condition though (at our specialist NHS clinic) and things are very different. I was told I have superceded the point at which people normally join the group. So I'm now too well. And boy do I know it. No one seems pleased that I can do more than them. People actually seem wary, suspicious, unfriendly and irritated each time I pipe up with some pearl of wisdom or other. The therapist seems to love the fact that she has someone there who is living proof of the pacing therapy they teach actually working (even though it was only a part of me 'improving'). I suspect some people in the group have become so attached to their toxic 'friend' (as I sometimes call long-term ill health) that they are not quite willing to contemplate life outside its clutches. How else do you explain the reticence, the sideways glances?
Of course, if anyone had suggested that I was too attached to my illness a couple of years back I'd have flipped. But was I? I stopped calling it my illness for a start. And these days I try and disassociate myself from any niggling symptoms like pain, noise sensitivity etc. with mixed success. I kind of feel I am doing to get better, rather than waiting to do.
All in all, it's been a very reformative year. And I am hugely different. Even tea with old friends yesterday felt different. Everyone sensed it. No one quite knows where to place me. All I know is I'm in a place that suits for now, and I'm happy to build on it. Tentatively.
Words like recovery, improvement and cure don't sit easily with me. There is no such thing as recovery as we can never recover what we were before illness struck. Illness changes us and it is to be welcomed for doing so. We grow and gain insights that we never had before. Improvement suggests that what went before was in need of enhancement in some way. I don't know. It's certainly an improvement to be using my wheelchair less and driving more in one respect. But was my status as a wheelchair user and public transport regular something that needed 'improving'? I suppose I'll settle for the fact that my health is improved, in some respects. Cure? No such thing. Not with what I've got. I prefer to talk in terms of windows, space, phases, cycles. It makes more sense. Ups and downs. Plateaus, peaks and troughs.
So why am I moaning about improvement, progress, whatever you want to call it? I don't feel so connected with my blogging buddies, because I have been too busy being 'better' to blog regularly. I got a first in a recent OU course and am very proud of the fact that I acheived 92 per cent in the exam. I have pretty much launched a small preserving sideline for friends, family and neighbours and am thinking of doing it on a larger scale. And I've been more involved with my son, making sure we have adventurous excursions and fun together. And in doing all this I've let a world that was supportive, engaging and fun slip through my fingers. Facebook, with all those past acquaintances (only a handful of them actual friends) is dull in comparison. Plus I feel very much in crip corner on there.
Put me in a group setting for people with my condition though (at our specialist NHS clinic) and things are very different. I was told I have superceded the point at which people normally join the group. So I'm now too well. And boy do I know it. No one seems pleased that I can do more than them. People actually seem wary, suspicious, unfriendly and irritated each time I pipe up with some pearl of wisdom or other. The therapist seems to love the fact that she has someone there who is living proof of the pacing therapy they teach actually working (even though it was only a part of me 'improving'). I suspect some people in the group have become so attached to their toxic 'friend' (as I sometimes call long-term ill health) that they are not quite willing to contemplate life outside its clutches. How else do you explain the reticence, the sideways glances?
Of course, if anyone had suggested that I was too attached to my illness a couple of years back I'd have flipped. But was I? I stopped calling it my illness for a start. And these days I try and disassociate myself from any niggling symptoms like pain, noise sensitivity etc. with mixed success. I kind of feel I am doing to get better, rather than waiting to do.
All in all, it's been a very reformative year. And I am hugely different. Even tea with old friends yesterday felt different. Everyone sensed it. No one quite knows where to place me. All I know is I'm in a place that suits for now, and I'm happy to build on it. Tentatively.
Saturday, 12 September 2009
Still Here
It may seem as though getting my wheelchair heralded the end of my blog. Nothing is further from the truth!
I may, when I look back, have experienced that sinking to the floor common at the end of a marathon (though I don't recall any turkey foil). And that may have led me to not blog for a while. But actually I haven't been on the floor all that time, I've found myself adjusting to life being radically altered.
The thing is, once you receive appropriate treatment for your condition, all manner of improvements can be noticed. So, once my arms were no longer having to reach beyond their capabilities to steer a mobility scooter, they ached less and were used more.
I have hugged and tickled my son more in the past few months that at any time in the last five years. My arms no longer need pillow support at night. I can give my hair a really good scrub in the shower and can do more potting on of plants in the greenhouse (not that there's been much gardening...that too has kind of been replaced lately).
I have cooked more, typed more (for uni...oh and I joined facebook which has been 'interesting') and indulged in brief bursts of an old passion, DIY - or DIY lite as I like to call it. And then, by accident, I found that I could drive my mother's power-assisted car. I parked it for her one day. And ever since, I've found myself borrowing it on occasion. I went on holiday with my son to Wales. It took three days to get there, and three days to get back. We had a great time. I saw the sea.
When I found a nifty tape device that hooks your ipod up to the tape deck via a cassette, well, I was in heaven. Somehow I prefer listening to music on the move. It's strange. But the fact that I can now listen to music at all is progress! Jimi Hendrix at half volume is better than not at all.
And now I feel that the happy combo of motability car (with necessary adjustments for safe and non-fatiguing driving - gear stick on steering wheel please!) and wheelchair is seriously possible.
So I am hammering my credit cards to get them paid off and next June I plan to be driving, and possibly working. Because being able to drive and not be exhausted by it extends my work options. Being able to use my arms for more than a few minutes at a time means I may have the stamina for some kind of employment. Of course, I may not. All this more of everthing could lead to less in due course.
I've been to Work Directions. They've dealt with countless people with my condition (living in a large urban connurbation has its merits). And they've told me to do some voluntary work (outside the home if at all possible). And then to come back and see them in a few months. To see how it goes. No rush.
In the meantime, I have decided against paying out what seems like a colossal amount of money for a 'life changing' treatment so many people are talking about.
Because, when I assess my life, I believe I've moved things on myself. And yet, I'm always aware that I could crash. I could be back in bed for long stretches, back, back...back. Going backwards? Going forwards? Back and forth. I wonder whether this is a factor I will just have to get used to as I move in and out of periods of differing health. And I wonder if the government departments I currently rely on will have to get used to it too...
Certainly, going 'back' will hold far less fear and disappointment if I've not been 'trained' to rebuild in haste and never, ever look back. And parted with the best part of £700 into the bargain. I wondered for a while if it was possible to get better this way. Now, I don't really care. It's not about getting better. What has struck me lately is my capacity to enjoy things in the simplest of ways, at 'face value'. Yes, being outdoors and more independent has helped that. But equally, so has being indoors and less independent. As I write I haven't been out in the sunshine today, or yesterday. Or the day before. And that's okay too. I'm sure it's lovely. I'll get there when I can.
Friday, 22 May 2009
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
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.
Saturday, 16 May 2009
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.
Sunday, 10 May 2009
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...
Thursday, 7 May 2009
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.
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.
Sunday, 3 May 2009
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...
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...
Friday, 1 May 2009
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:
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."
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."
Friday, 17 April 2009
Nearly That Time Again...
May 1 is when bloggers unite against disablism worldwide for Blogging Against Disablism Day. It's become a truly powerful and inspirational event.
Check out the blogroll at Diary of A Goldfish and you'll see who's registered an interest so far.
One thing I'm going to set myself for this year is to get to know four blogs that I've never read before in the build up to BADD.
So I'll be seeing what's out there in the next few weeks. Then the big day will arrive and we can all join together and make a big noise.
Check out the blogroll at Diary of A Goldfish and you'll see who's registered an interest so far.
One thing I'm going to set myself for this year is to get to know four blogs that I've never read before in the build up to BADD.
So I'll be seeing what's out there in the next few weeks. Then the big day will arrive and we can all join together and make a big noise.
Monday, 13 April 2009
Telling A Story
I want to tell a story about my garden, but I'm not flowing at present, so for those who've seen the first part of the story, it'll be back soon after some rewriting.
Wednesday, 18 March 2009
Saturday, 14 March 2009
Pick Up The Phone
Every year they do it. And every year it reinforces false messages.
There's a kid called Danny. He lives with his Mum and Dad. Mum has MS and is housebound, Dad suffers with depression and agoraphobia. They never go out. They need Danny to do most of the chores around the house. Danny works so hard that his schoolwork suffers. He has few friends. He is exhausted and lonely.
This is the typical scenario presented by Comic Relief in their Young Carer films. The children are always exhausted and lonely. The parents are always totally dependent on the children. A Young Carers' project always comes to the rescue. Thank God for Young Carers, because otherwise Danny would go mad or kill himself or something.
Cut to presenters. "It's not fair, a child doing all that for their parents and not having a childhood. So pick up the phone."
No, don't pick up the phone. Let's deal with some facts for a second. Look at reality.
Danny is indeed one of thousands of young carers across the UK. Many of them are not getting the help they need from social services to relieve them of the chores they carry out to look after their families. There is an expectation by social services that young children, children who may be no more than eight or nine, should carry out heavy bin bags every week, should cook, clean and wash clothes. If you are disabled and live with someone who is not, then nine times out of ten you will find it far harder to get help than if you live alone. This is because carers, young and old, save social services money.
Many children like Danny are indeed lonely, shunned by their classmates because their Mum's a freak or their Dad's a nutter. So no one at school asks them round for tea. The kids at school are only copying their parents, who don't socialise with weirdos. A whole new generation of disablist people, sadly in the majority, is created by this handed-down experience.
But surely these parents, surely they should be looking out for Danny, even if they can't face the crips themselves? Too busy, far too busy, out of sight out of mind.
Danny, and the thousands of kids like him, needs to be invited round for tea and asked to parties. Then, more than likely, he would be played with at playtime.
What Danny doesn't need, necessarily, is Comic Relief providing him with a Young Carers scheme. So much of his life has been formalised by illness in the family. It may be that the only people popping round to the house are doctors, CPNs, social workers. Does he need more of them? Does he need a label? Does he need to be herded off with all the other Young Carers? Away from classmates, away from parties at weekends, away from play. Does he want to talk about his feelings? Does he want to mix with other ostracized, exhausted, fucked up kids who are angry? What happens when that anger spills over?
Danny's parents may have tried their local Young Carers scheme. They may have found that their child was bored, bullied and far from happy on the few outings he attended. Surprised by the lack of cohesive support, the lack of discipline, Danny's parents may have agreed with his pleas not to be sent back to Young Carers.
Harsh but true.
My local social services expected my son to put out bin bags and clean and do washing when we left his Dad. My son was nine. I got a solicitor who challenged social services. We now have four hours help a week. It stops my son having to do heavy chores and personal care. All the laundry, housework, bed changing, bin emptying and shopping is done by paid adults. As it should be.
My son has experienced a level of social exclusion that I can only keep in check by having his friends round to tea. His friends from school. The ones who rarely invite him back. It's not the kids' fault. And I'm not so petty or needy that I let the lack of reciprocation stop me. What pleases me is that my son and I get to show these kids that you can live with a disability and have a laugh. Make homemade pasta, post YouTube animations, read Simpsons comics, watch films.
And no, Young Carers wasn't all it was cracked up to be. My son, was wise enough to know that being given a label at eight and encouraged to mix with other kids with that label wasn't quite right. What he wanted was to see his friends from school. It's true that for a while that didn't happen a lot. But that wasn't all my fault.
My son was, in the end, relieved of the pressures that can lead society to view parents with disabilities as a burden. A long-fought battle led to us getting the adult, paid-for help that we needed. With that help both of us have more energy to socialise.
It's as simple as that. Why make it more complicated?
And, by the way, if you're going to pick up the phone then call the kid down the road. Ask them round for tea. A plate of fish fingers and a play with your kids will go a lot further than a fiver for Comic Relief.
There's a kid called Danny. He lives with his Mum and Dad. Mum has MS and is housebound, Dad suffers with depression and agoraphobia. They never go out. They need Danny to do most of the chores around the house. Danny works so hard that his schoolwork suffers. He has few friends. He is exhausted and lonely.
This is the typical scenario presented by Comic Relief in their Young Carer films. The children are always exhausted and lonely. The parents are always totally dependent on the children. A Young Carers' project always comes to the rescue. Thank God for Young Carers, because otherwise Danny would go mad or kill himself or something.
Cut to presenters. "It's not fair, a child doing all that for their parents and not having a childhood. So pick up the phone."
No, don't pick up the phone. Let's deal with some facts for a second. Look at reality.
Danny is indeed one of thousands of young carers across the UK. Many of them are not getting the help they need from social services to relieve them of the chores they carry out to look after their families. There is an expectation by social services that young children, children who may be no more than eight or nine, should carry out heavy bin bags every week, should cook, clean and wash clothes. If you are disabled and live with someone who is not, then nine times out of ten you will find it far harder to get help than if you live alone. This is because carers, young and old, save social services money.
Many children like Danny are indeed lonely, shunned by their classmates because their Mum's a freak or their Dad's a nutter. So no one at school asks them round for tea. The kids at school are only copying their parents, who don't socialise with weirdos. A whole new generation of disablist people, sadly in the majority, is created by this handed-down experience.
But surely these parents, surely they should be looking out for Danny, even if they can't face the crips themselves? Too busy, far too busy, out of sight out of mind.
Danny, and the thousands of kids like him, needs to be invited round for tea and asked to parties. Then, more than likely, he would be played with at playtime.
What Danny doesn't need, necessarily, is Comic Relief providing him with a Young Carers scheme. So much of his life has been formalised by illness in the family. It may be that the only people popping round to the house are doctors, CPNs, social workers. Does he need more of them? Does he need a label? Does he need to be herded off with all the other Young Carers? Away from classmates, away from parties at weekends, away from play. Does he want to talk about his feelings? Does he want to mix with other ostracized, exhausted, fucked up kids who are angry? What happens when that anger spills over?
Danny's parents may have tried their local Young Carers scheme. They may have found that their child was bored, bullied and far from happy on the few outings he attended. Surprised by the lack of cohesive support, the lack of discipline, Danny's parents may have agreed with his pleas not to be sent back to Young Carers.
Harsh but true.
My local social services expected my son to put out bin bags and clean and do washing when we left his Dad. My son was nine. I got a solicitor who challenged social services. We now have four hours help a week. It stops my son having to do heavy chores and personal care. All the laundry, housework, bed changing, bin emptying and shopping is done by paid adults. As it should be.
My son has experienced a level of social exclusion that I can only keep in check by having his friends round to tea. His friends from school. The ones who rarely invite him back. It's not the kids' fault. And I'm not so petty or needy that I let the lack of reciprocation stop me. What pleases me is that my son and I get to show these kids that you can live with a disability and have a laugh. Make homemade pasta, post YouTube animations, read Simpsons comics, watch films.
And no, Young Carers wasn't all it was cracked up to be. My son, was wise enough to know that being given a label at eight and encouraged to mix with other kids with that label wasn't quite right. What he wanted was to see his friends from school. It's true that for a while that didn't happen a lot. But that wasn't all my fault.
My son was, in the end, relieved of the pressures that can lead society to view parents with disabilities as a burden. A long-fought battle led to us getting the adult, paid-for help that we needed. With that help both of us have more energy to socialise.
It's as simple as that. Why make it more complicated?
And, by the way, if you're going to pick up the phone then call the kid down the road. Ask them round for tea. A plate of fish fingers and a play with your kids will go a lot further than a fiver for Comic Relief.
Thursday, 12 March 2009
Too Much Clutter
I have been neglecting this space at a cost recently. Trying to accomodate my brain going from first to fifth gear has resulted in chaos. Some of it good, some of it not so good.
I'm now in hyperdrive and desperate to get off. Pitching from days of no sleep to sleepathons where I only seem to get up for breakfast with my son before returning to bed until he gets home from school.
The best thing to report is we have a fully functioning greenhouse. And I have sourced some local manure. The worst thing? Finding out that I accidentally started a course in Applied Linguistics. I thought it was lighter than it is. Aaaagh.
What is the etymology of haywire I wonder?
I'm now in hyperdrive and desperate to get off. Pitching from days of no sleep to sleepathons where I only seem to get up for breakfast with my son before returning to bed until he gets home from school.
The best thing to report is we have a fully functioning greenhouse. And I have sourced some local manure. The worst thing? Finding out that I accidentally started a course in Applied Linguistics. I thought it was lighter than it is. Aaaagh.
What is the etymology of haywire I wonder?
Thursday, 12 February 2009
Photographic Evidence
I was taking photos on and off, more off than on, through the winter months...
but not posting them due to extreme motivational problems and January lethargy.
As it's February I can say I'm over that now and treat you to a gallery.
None of these are particularly good but they do show what I've been up to recently.
Maybe one day I'll figure out how to do one of those funky slideshow things.
Happy Days
Several things of late have made me feel happy. Simple things like snow, my son's rosy cheeks after hours going AWOL with friends in the park (this'll be a winter to remember I think)...and some serious cooking to brighten up January.
I cannot extol highly enough the virtues of a home-made chicken and ham pie. And whilst you're at it, make an apple pie using double the pastry recipe. And, if you're feeling really homely, try home-made apple juice. Now that, my friends, really is a winner. No sugar, and up to a litre or so of juice from two bags of apples. More expensive than carton juice, but cheaper than the posh stuff and much nicer.
Cut up lots of apples (about 6lb) and put in a large saucepan into which you have poured four inches of water. Heat on high with the lid on til they're bubbling, reduce to medium and turn off when soft and fluffy. Let them cool a bit. Strain through a sieve lined with cloth for clear juice or just a sieve or colander for cloudy. Delicious.
Other sources of happiness are:
- Being occupied with mild study...more on the OU soon
- Pootling about with some desktop publishing projects - and more on that soon too
Monday, 2 February 2009
I Pressed the Red Button On My TV
And this happened!
Awesome.
Update: May I just add that the song title has nothing to do with me posting this...it was far more a case of being blown away by seeing a full orchestra and choir giving an album I have sort of thought about buying the big treatment. I used to play in an orchestra and sing in a choir too, so this was an emotional experience. I've actually never heard Seldom Seen Kid before, and now I think I'll stick to this version as I fear that the 'original' will pale in comparison. I saw Elbow years ago and they were brilliant. Their music lends itself to this scale of performance. The orchestration throughout this concert was superb. I wonder who does that with an album? The band or an arranger? It's quite tricky. Look at the way the oboes take the descending theme halfway through. And that full-on brass! And the choir! Even my son liked it. And he doesn't do orchestras.
Awesome.
Update: May I just add that the song title has nothing to do with me posting this...it was far more a case of being blown away by seeing a full orchestra and choir giving an album I have sort of thought about buying the big treatment. I used to play in an orchestra and sing in a choir too, so this was an emotional experience. I've actually never heard Seldom Seen Kid before, and now I think I'll stick to this version as I fear that the 'original' will pale in comparison. I saw Elbow years ago and they were brilliant. Their music lends itself to this scale of performance. The orchestration throughout this concert was superb. I wonder who does that with an album? The band or an arranger? It's quite tricky. Look at the way the oboes take the descending theme halfway through. And that full-on brass! And the choir! Even my son liked it. And he doesn't do orchestras.
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