So How Am I?

[Editor’s note: I know many of you have been following Sue Marsh’s remarkable campaign against the government’s welfare “reform” proposals – especially their dangerous impact on disabled people. I thought I should crosspost this from Sue’s blog, as it’s at least as important as the campaign itself. Sue will be in the thoughts of everyone at LabourList today.]

Well I can confirm categorically that Arbeit does not macht you frei.

Quite the opposite in fact. Far from “freeing” me, work has put me in a hospital bed chained with plastic tubes.

I’m almost certain none of the politicians so glibly deciding our futures know what the “spoon bank” is. If you have a long term condition, then you only have so much energy for any given day. When it’s gone it’s gone – WIGIG. Now that doesn’t mean you can’t borrowenergy, but just like the deficit, it has to be paid back.

When you borrow energy (or “spoons) you are paid in adrenaline. The adrenaline convinces your body that all is well. OK, you’re a little too shrill, a little too twitchy, you’re eyes a little too bright, but I’m sure Mr Grayling wouldn’t have noticed any of that as he sat talking to the composed little scrap with her make up just so.

After a while, your natural instincts try to step in. “Go to bed” – the thought unbidden takes you by surprise. “Just close your eyes” – the siren call of rest as the adrenaline ebbs for a moment.

In my case, I pay in immunity. As the weeks went on, I got a cough here, a splitting headache there so piercing it made me cry. I got neuralgia, sinusitis, the cough turned into a chest infection, I got spots in front of my eyes, atrial fibrillation. Little immune complaints popping up all over in protest at my unsustainable spoon debt.

And then I stopped.

When you stop, the adrenaline ebbs away. For a day or so you feel sad, but you’re not quite sure why. Then you get sick. Really, really sick. the adrenaline blanket that had been keeping all those “niggles” that you ignored through gritted teeth at bay, is stripped away. My chest infection turned into something worse, my temperature started spiking, my face puffed up like a football, My ribs started screaming in pain.

And here I am. In a side room on an acute medical ward. So infected, such a blob of immune horridness that I am not safe to be around other humans. I must be screened for scary things, because scary things happen when you are “immuno-compromised”. This is not the face you all saw all week eh?

I’m not the only one. We have at least two other spartaci that I know of in hospital – one in intensive care. Another collapsed two days ago after spending a week, non stop, sitting at his computer, building us a spreadsheet with one painful hand. Kaliya hasn’t been able to speak for over 3 months as her oesophagus has collapsed on itself.

This is the reality of sick and disabled people fighting back. I can put it in very stark, unemotional terms, but that is what it takes. There is no doubt at all that some of us did this knowing that our lives were at risk. What on earth is happening in 2012 when sick and disabled people will go to such lengths to be heard???

Yet most of our media sit comfortably in their glass and chrome towers, desperate to be convinced that we are just a few snatching, greedy, shirkers. All we want is to “protect our special interest group” or “not take our share of the pain” You could see the irritation last week when they were forced  to report that all may not be well with the welfare reform bill. Most took the government line. “But Sue, you must agree that DLA needs reform?” When I knew they didn’t have the first idea why it might – hadn’t read the research, hadn’t done their job.

They ignored the coalition we built, they ignored every major charity backing the Responsible Reform report and issuing press releases and statements in support. They ignored the rush of Blairites to confirm that actually, some very bad things are happening. Not one did a serious piece on our research. Not one. they all wanted “stories” – the soldier with his leg blown off refused benefits, or the cancer patient who dies just hours after being found fit for work.

We wouldn’t give them. We refused. Because that’s not what the Spartacus Report was about. There were at least 5 serious news stories in it, and if that wasn’t enough misery-porn for them, then our story will just have to wait.

I’m “in the best place” – antibiotics and saline drips and painkillers are oozing into my blood. Everyone is very kind. The nurse who admitted me knew who I was and actually grabbed my wrist to check my name – “Are you Sue Marsh??? You??”

I have no idea if we will be able to do what we did again. We knew it was unsafe. At some point, we need the more able to take some of the load. We need them to see what is being done in their name. We need them to act. Because we can only act for so long.