I just found out that Karen Sherlock, @pusscat01 has passed away.
Here is here twitter profile : "Chronic Spoonie, lots wrong. ESA stopped by this inhumane government. Preparing for dialysis. Each day is tough."
Karen embodied our fight in almost every way. She was desperately ill. Her kidneys were failing, putting a huge strain on her body. Ultimately it seems she died of a cardiac arrest. An operation had recently been cancelled at the last minute, though I have no idea why or if it is relevant to her death.
She had been found capable of some work by the DWP. Placed in the Work Related Activity Group, her Employment and Support Allowance was time limited to one year after the welfare reform bill went through. Not only that, but it was limited retrospectively, meaning that she only had a few months left to appeal for long term support (Support Group) before she lost everything.
I won't go into more detail here. It's not for me to list her complaints and trials, but there is one thing everyone in this country should know.
She was terrified. Beside herself with fear. She lived her last months desperately scared that her family would not survive the onslaught it faced. She was "the most vulnerable" whatever that is. The system failed her and she spent her last precious moments in this world fighting. For herself, for her family and for others.
She was one of us. She was Spartacus. And now she's dead and she died in fear because the system failed her, because cruel men refused listen and powerful men refused to act.
She spent her last months fighting for the "security" of £96 a week and the reassurance that it couldn't be taken away. She won her battle. Just two weeks ago she was finally put into the Support Group of ESA. After months of unbearable stress, resilient commitment and endurance beyond comprehension, she won her battle.
But she lost her war and we must all make sure that whatever comes, we win that war in her name and in the names of the many thousands more fighting for life and dignity.
RIP Karen. We WON'T forget you.
Monday, 11 June 2012
Sunday, 10 June 2012
Reversal Therapy, Crohn's and the Seasick
Some of you may have noticed that I got exiled just off the coast of Dover on Friday. Due to hurricane winds (oh yes my friends, my appalling luck is not limited to matters of health) we were stuck at Calais for three hours, then couldn't dock at Dover for another two.
Simon, a twitter friend (@SilverCat) wrote this fascinating post about something called "Reversal Therapy. He's a gestalt therapist who blogs at http://www.lechatdargent.wordpress.com' and has given me permission to re-post it here :
The water was a little choppy and one by one, most of the other passengers succumbed to seasickness. I'm afraid it was too much for my black humour to resist, and I lit up twitter with my hilarity at being the only person NOT being sick on a boatful of vommers.
Reversal experiments: @suey2y vs the seasick
An illustrative example of accessing disowned/underused aspects of self, spontaneously enacted, and viewed from the perspective of gestalt therapy theory. This post is published with @suey2y's permission.
Thursday, 7 June 2012
The Spartiquilt
What is Spartacus?
So many people have asked me, but how do you define a moment in time? A need? A defiance? A refusal to be defined by ignorance?
It was and is a reclamation of self, a declaration of inherent worth. Thousands of voices speaking as one. "I am. I fight. I win. I have never given up and I never will."
"I will clasp my pleasures close because Life has taught me their value."
"I will fight for justice because I learned long, long ago that life is not fair"
"I will endure with grace and hope and dignity because I know so well they are all any of us can ever keep close"
"When you hurt me, I will smile and help you"
"When you are battered and bruised and low, I will be there, and I will be the one who truly understands your pain"
"These are my values. This is what I am worth. This is what I can give. If you stop the mad rush of life and listen, you will hear me. I am there and I have learned strange and wonderful things"
"I cannot be beaten. You were wrong."
A while ago, some people on blogs and twitter, people who instinctively knew Spartacus, felt him in their blood and their painful bones, had an idea. They would make a spartiquilt.
Square by square, they would capture our moment. Stitch by stitch, moment by moment, they would show our hearts and dreams.
I imagined the pioneers. Women of silk and steel, of hope and fear, of doubt and belief. How they crossed the great plains, never giving up.
How they came together to sew their stories into painstaking beauty.
Like us, they had time, even when they had nothing else.
Like us, not all of them would make it, but in their art, all would be remembered.
Like us they craved comfort above all, craved the life they used to know.
Like us, they had a story to tell that few would believe and fewer would ever truly understand
Like us, they were rarely heard.
Like us they found a quiet community to counter the individual, reckless ambition that surrounded them.
Like us, all they could leave was a testimony with a quiet fortitude and a precious hope.
Not fragile after all. Not weak at all.
************
If you would like to make a square, it can be anything at all, details are here : http://www.spartacusforum.org.uk/forum/index.php/topic,396.0.html
You can get info and ask any questions and there is a link to a dedicated #spartiquilt blog.
I can't sew to save my life, but I left a poem I wrote that means a lot to me.
The brilliant #spartiquilt ers will somehow transform it to a quilty squary thingy for me.
Please, don't be shy, don't think your idea any less than another. Quilting brought all together, valued every stitch, gave everyone equal power and worth.
Whatever you want to do, just do it and I swear, I will make this the most famous quilt for a generation.
Because that is Spartacus. Alone we whisper, together we shout.
** I don't mean to imply that #spartiquilt is only for women, the pioneers were just an example. Anyone who is sick or disabled, their friends, families
The fab guys at @InkwellArts have let us use their space, Tuesday 11am-1pm, Leeds, if anyone can physically come along and join in but do get in touch if you have access needs. @fibro_girl @clareOT
Tuesday, 5 June 2012
Recovery
They keep telling me to enjoy my holiday. Relax, they say.
But I'm holding onto a rope. Every few inches, there's a knot. The rope drags me behind the ship and the waters are rough and cold. I grit my teeth and hang on. I've been hanging on so long it's all I know.
The waters are deep and frightening. Whatever happens, whatever else I do, I can't let go of the rope or it's over. I'd float away like so much flotsam. I'd never see the ship again.
I've managed to pull my chest clear. Inch by agonising inch I've dragged my hands one over the other, knot by knot. But it only takes a moment, a lapse, if I stop concentrating on the rope, I'll plunge back down, the knots slipping through my icy, numb fingers until I'm up to my neck again. Or below the water completely.
They talk to me from the ship, but still it's hard to hear and I focus on each knot, clinging on.
And the nights. At night I dream. At night there are the corridors. Endless gleaming, sterile corridors that I have to walk. My head pounding beneath the flickering strip lights, but I have to keep shuffling along. Someone's waiting for me at the end. I'm sure they are, they called.
It hurts and I grit my teeth. I swear a little. No-one is there. It's just me and the endless shining, white corridors. I'm always alone. (So very alone)
Every time I think I'm at the end there's another corner, another endless corridor.
I start awake, bathed in sweat, dripping, the bed drenched. I reach for the tissues and mop myself, my hair, my chest, my back, my knees, my face.
I try to sleep again, and I'm straight back to the corridors. And the sweat. And the corridors. And the sweat......Until dawn comes and I hear the cuckoo that lives in the tree above our tent.
In the French sun I sit and watch my life.
It goes on, a seamless joy of baby giggles and water splashes, of jiggling rides on Daddy's shoulders and grazed knees - Daddy picks them up, Daddy cuddles it better. Tired, or hungry, Daddy is there. And I watch, the gap in the scene is me. I've been gone so long, life moves on. I sit because I can't climb and dive and plunge. I sit because it still hurts. I sit and I watch my life.
Sometimes, they remember me, a small, shivering bundle of chlorine and droplets hurls onto me. I wince, but inside, fearful they won't come again. I shiver from their cold skin but only when they've gone. I watch them run back, all knocking knees and chattering teeth and delight and I weep, silently so no-one sees, wondering if it will ever be me again who soothes the tears and picks them up, whirling them round in joyous circles, rubbing away the shivers, cuddling them to sleep.
"Mummy has to sleep" Do they ever remember the days I didn't? "Mummy has to have her medicine" Do they think I love it and need it more than them?
I eat the moules mariniere, but the soundtrack in my head says "you nearly died" I chat with other holidaymakers, but I want to tell them I just nearly died. Elvis sings, unexpectedly and mawkishly about "little Tommy", together they'll find a brand new Mommy, and tears spring to my eyes at the bar. I try to read the novel I brought with me. The mother dies in the first chapter and I hurl it away, the pages fluttering loose on the wind. I can't breathe. I look up and people on their civilised tent verandas are watching me, a question in their eyes. I look down at the ground and go inside.
I nearly died, I nearly died, the rhythm of my wheelchair crunching over stones. I've nearly died before, so many times and there will be so many more. So far, I've held on to the rope.
There's a stone in my chest. It makes it hard to breathe. It's made of tears I can't cry. I want to sob until I sleep. I want to cry and cry until salty and damp, there are no more tears left. Instead, I swallow past the stone.
Every now and then I wrench in a painful breath. It sounds of pain and ripped dreams, of ragged edged fear and exhaustion. The strangers look puzzled, they ask if I'm ca va? Do I need anything? I smile, swallowing the stone back down. I shake my head because words can't get past the stone. I focus on breathing in a way that doesn't frighten them, but every now and then another sob breath comes. I cough or look away until the stone is back in place.
It will fade. I will slowly drag my whole body from the icy water, knot after knot. If I'm really lucky, I may get to lay on the deck for a while.
The corridors will get shorter. One night there will be a window with a garden outside. People will start to walk with me. The sweats of horror and chemical-onslaught will pass.
I'll forget I nearly died as slowly, scene by scene, I get busy living again.
I'll be mummy again.
The stone will shrink. As I swallow it down, one day I will realise it's gone, that I'm breathing, in and out, automatically, that breathing is smooth and natural and calm.
Eventually, I will see that flesh has covered these bones again, that you don't need to wince any more when I shuffle past in leggings or shorts.
I'll be "fine" again.
But every time, I'm a little less "fine". It's a little harder.
The rope is a little longer.
The waters a little rougher.
The corridors a little longer and brighter and lonelier. (So lonely)
Daddy a little more Daddy, Mummy a little less Mummy.
The fear and sweat a little colder.
The stone a little bigger.
Death a little closer.
Monday, 28 May 2012
Atos and the Paralympics
For anyone who might be interested, here is a slightly longer (original) version of the article I wrote recently for the Guardian about Atos and the Paralympics.
"I love the Olympics. One of my earliest memories is of the entire family setting alarms for 4am to watch Robin Cousins win gold in the ice skating. We always watched every event, from archery to synchronised swimming.
"I love the Olympics. One of my earliest memories is of the entire family setting alarms for 4am to watch Robin Cousins win gold in the ice skating. We always watched every event, from archery to synchronised swimming.
I loved the superhuman excellence, the sheer grit and
determination on the faces of the athletes. The dedication to perfection, the
sacrifice that meant nothing – nothing was more important in their lives than
that finish line or target.
I clearly remember the first time the Paralympics came onto
my radar. I watched, literally open mouthed as Tanni Grey-Thompson set her eyes
on a distant prize, gritted her teeth, shut out the thunderous noise of the
crowds, then hurtled down the track with such speed and grace, it was hard to
believe she had any kind of disability at all.
I was similarly awestruck by my
first glimpse of the seemingly bionic Oscar Pistorius. As he raced down the
track on those incredible prosthetics, I could hardly believe my eyes. Did I
enjoy his achievement more because he was disabled? I think I did a little.
That same sense of overcoming great challenges that I had always so admired in
traditional Olympians, magnified 100 times in a man determined to be the best,
whatever the odds.
When I heard that the UK had won their bid to host the 2012
Olympic Games I was thrilled. I saw it as an honour, a wonderful chance to show
these superhuman athletes the respect and honour they deserved. To celebrate
their achievements, and though I was ill myself by then, to actually have the
chance to go to some events! I told my children about how wonderful it would
be, described the atmosphere, saved every penny I could.
My first disappointment was the price of the tickets. I’d
saved £1000, determined my children would get to take part in this historic,
once in a lifetime event. But I wanted them to follow an event through some
heats and a flagship final. Even my £1000 wasn’t enough, and even if it had
been, the finals were all way to late in the evening for small boys. Soon,
accounts of corruption and corporate favouritism emerged. Most of the best
tickets would go to dignitaries or corporate sponsors. I was heartbroken.
Soon stories emerged of corruption all through the event –
billions spent on terrifying security, a budget out of control, decadent perks
for the Olympic committee that read like the last days of Rome. A dedicated
traffic lane that could only be used by VIPs and sponsors. Still the budget
raged out of control, mocking austerity Britain. More security, drones above
the stadium, a London more evocative of the Gaza Strip.
But as a disability campaigner, the greatest injustice had
to be the day we heard that Atos would be sponsoring the Paralympics. The very
company charged with denying disability on a national scale through the
government’s flawed and dangerous “Work Capability Assessments.” As hundreds of
thousands of “everyday” disabled people were hounded and humiliated into
poverty, told they were fit for work with kidney failure or paraplegia or MS,
the same company had the cheek to buy a slice of this very “superhuman” image
of disability.
It seemed utterly symptomatic of a corporate culture, out of
touch and out of control. As Murdoch crumbled, the Met were exposed as
complicit and corrupt, as our politicians fiddled their expenses, it seemed
somehow fitting that a company hurting so many disabled people should sponsor
the Paralympics. Dow Chemicals got in on the act too, causing India to threaten
a boycott, MacDonald’s, that ultimate purveyor of junk food sponsoring the
pinnacle of fitness; the very last gasps of decaying capitalism seemed to preen
her feathers.
Some have called for a boycott of the Paralympics until Atos
pull out. Personally, I think this is the worst possible thing we could do. Do
the athletes who gave their every waking moment to be the best deserve to have
that taken away from them by a company already responsible for the suffering of
so many sick and disabled people? Is there any greater contrast to the
arrogance and greed of the corporate sponsors than the selfless dedication of
human beings who simply want to be the best they can be?
These same companies will try to tell us that these paragons
of disability prove that anyone can do it if they only try. This is no more true for disabled
people than it is for the able bodied. Very, very few of us are born to be the
fastest or the best. But we are born to try, to strive, to overcome and to
achieve our own greatness. May the incredible feats of our finest athletes –
whether disabled or able bodied – remind our corrupt elite of what it is to be
truly brave and decent.
Saturday, 26 May 2012
On arriving home from hospital
I wrote this years ago, after a long hospital stay. You never truly appreciate simple things until you've been deprived of them. Just a warm breeze on your skin, a kiss from your child, the light flickering through leaves on the table, gives more joy than I could possibly explain.
Warm.......
Comfy.....
Sensory overload.
Fire flickers, Dave,
Sinatra ears and Chablis ice lips
Purple Haze, nowhere to be.
Slade & chestnuts, Christmas shopping, scented trees and Dad's beef stew.
Aloof cat, (loves me really)
Colour! Scarlet! Azure blue!
My Red Bed!
My Golden Seaside
Comfort and presents and diamonds.
Food, friends and free will.
Freedom! Freedom! Freedom!
Utterly helpless to In Control
Horribly frightened Quietly Calm
Truly alone to Wrapped up in loveliness
Six year old child to Entrepreneur
"Needs to be sectioned" to "Wow, look at her!"
Starchy linen to Fake Fur
Deprived to Spoilt
Prose into Rhyme
Bursting with life after thinking I'd die.
Friday, 18 May 2012
Hoist by His own Petard?
Phew. Thank goodness for that! "Worried veterans" will now be exempt from "humiliating retests" that could have seen them "stripped of vital cash" They will no longer get the "same grilling as cheats and scroungers."
You know, all those cheating cancer patients, fraudulent layabouts on transplant lists, feckless paraplegics and lazy lummoxes with cystic fibrosis, muscular dystrophy and cerebral palsy.
The thing is Mr Cameron, I thought you said the tests would be fair?
I thought you said "genuinely disabled people" had nothing to fear from disability benefit cuts?
I thought you said we needed a humiliating grilling to ensure we got the right support? What if our "brave heroes" don't get this promised support? How will they find work? How can you be sure they won't just "fester"?? Are you not "abandoning them to a lifetime on the scrapheap?"
So which is it Mr Cameron? If the tests are fair, then surely ex-military personnel have nothing to fear? If they are not assessed, how will you avoid all the festering?
If the assessments for sickness and disability benefits are not fair, then did you not ought to be booking a one way tickets to Strasbourg, to attend a trial over the breach of human rights of over 5.2 million disabled people?
What of other limbless souls. Is there something more inherently worthy in losing a limb in battle than losing one saving a child from an oncoming train? Is a soldier with PTSD more worthy than an aid worker? Is an airman suffering terrible disfiguration from artillery somehow more disfigured than the woman who had acid thrown in her face so she could never marry the "wrong" man. Are you sure they're "more worthy"?
Or is it as many of us have known all along? The tests are a "humiliating grilling" "genuinely disabled" people will be "stripped of vital cash", and you don't care one tiny bit unless the disability fits your Eton-narrow view of "worthy"?
To maintain the military metaphor, I believe Mr Cameron, you have been hoist by your own petard sir.
**********
By the way, I absolutely refuse to fall for their divide and conquer. I'm delighted for those service men and women who no longer have to live in fear. Every step forward is a step in the right direction. I just hope they will join with the rest of us to stop the persecution of all sick and disabled people.
You know, all those cheating cancer patients, fraudulent layabouts on transplant lists, feckless paraplegics and lazy lummoxes with cystic fibrosis, muscular dystrophy and cerebral palsy.
The thing is Mr Cameron, I thought you said the tests would be fair?
I thought you said "genuinely disabled people" had nothing to fear from disability benefit cuts?
I thought you said we needed a humiliating grilling to ensure we got the right support? What if our "brave heroes" don't get this promised support? How will they find work? How can you be sure they won't just "fester"?? Are you not "abandoning them to a lifetime on the scrapheap?"
So which is it Mr Cameron? If the tests are fair, then surely ex-military personnel have nothing to fear? If they are not assessed, how will you avoid all the festering?
If the assessments for sickness and disability benefits are not fair, then did you not ought to be booking a one way tickets to Strasbourg, to attend a trial over the breach of human rights of over 5.2 million disabled people?
What of other limbless souls. Is there something more inherently worthy in losing a limb in battle than losing one saving a child from an oncoming train? Is a soldier with PTSD more worthy than an aid worker? Is an airman suffering terrible disfiguration from artillery somehow more disfigured than the woman who had acid thrown in her face so she could never marry the "wrong" man. Are you sure they're "more worthy"?
Or is it as many of us have known all along? The tests are a "humiliating grilling" "genuinely disabled" people will be "stripped of vital cash", and you don't care one tiny bit unless the disability fits your Eton-narrow view of "worthy"?
To maintain the military metaphor, I believe Mr Cameron, you have been hoist by your own petard sir.
**********
By the way, I absolutely refuse to fall for their divide and conquer. I'm delighted for those service men and women who no longer have to live in fear. Every step forward is a step in the right direction. I just hope they will join with the rest of us to stop the persecution of all sick and disabled people.
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