Thursday, 14 June 2012

We Who Are Left

There is nothing wrong with me. I'm 'disabled', because despite what I can do which makes me 'able-bodied' and 'able-minded' I also carry with me a specific list attached to my identity which defines certain things I can not do. Everyone has a list of things they can't do(and if you haven't written it yet, write that down that you haven't probably because you can't, so at least no one can accuse you of not trying), but I am disabled because my list has certain things written on it and these are things which almost everyone else can not only do but do so with little discomfort or preparation.

But there is nothing wrong with me. I can list lots of reasons why. I can debate them. I can repeat myself and I can disingenuously say that I have never lost an argument on this subject with someone who disagreed. It doesn't mean that my most powerful detractor is weak or can't blow my reasoning skills out of the water and make me doubt my position. That's because the detractor in question is reality itself. This week, on Monday morning my detractor did it again.

There were at least a dozen contributors to the Responsible Reform 'Spartacus' Report, most were not credited on the front cover as I was(for quite a small part in contrast to the huge amount of work done by others). I only recognised three other names: Sue Marsh, Kaliya Franklin and Declan Gaffney. I have over a hundred Twitter followers; no idea who most of them are. Again with the 25 blogger followers listed at the bottom; I knew few more than those already mentioned but that's it. I have two real-life friends, I see one of them every fortnight. The only regular direct social experience I have is a structured social support group on Thursday afternoon for three hours with two staff and usually about two other members turn up out of five. I do not feel lonely; I'm overwhelmed with social pressure by just ten people a week including family. This makes even contact with others over the internet something that has to be carefully managed. Having lots of friends and acquaintances isn't important to me.

But having the right ones is. This week one slipped away forever. I never knew Karen Sherlock and now I never will.

Kaliya Franklin has been collecting writing by Karen and posting it on her(Orwell-nominated) blog and I have been reading through it. At this time Karen is believed to have died from a heart attack, possibly as a complication of her maladies which include diseased failing kidneys, stage 4("there is no stage 5") renal disease and type 1 diabetes. I do not know if Karen would be alive today if not for the stupidity of ambitious and callous politicians; but from her writing it seems Karen suffered unnecessarily from 2008 onward with the introduction of ESA at the same time she had to leave work, dismissed because Atos told her employers she was unfit for work. Atos then declared her fit for work when it came to her Work Capability Assessment to measure her eligibility for ESA. Karen suffered for four years and it got worse- she spent her final months rationally terrified. This was the kind of terror which campaigners were saying the government was causing. The government responded by accusing *us* of 'fear-mongering'. That certainly would not have been helpful to Karen's health; it was certainly destructive to many of us. I'm lucky that my investigative, campaign and writing activity does not in itself affect my health like it does the others(rather it's the opposite extreme), but I've seen repeatedly that it does affect them and the harder it is made for them the bigger the toll on their health and that must have included Karen. This sacrifice is made as to avert a catastrophe that could harm millions into the future and whilst Karen worked to save herself she also did the added campaign work, knowing what we were up against and what it could cost her.

It took four years for Karen to finally be put in the ESA Support Group where she belonged, at the end of May. Days later, she was dead. She gave her life that others might live.

Like Sue and Kaliya she talked about the problems she had vividly, the kind of thing I just can't do. When I wrote about it last time I speculated as to why they are able to do this when I can't and it was very cheesy. Now I've had another idea because Karen's death brought something into focus. There is nothing wrong with me- until something goes wrong, then I very much need to explain what is wrong with me. I have a very odd phobia, not as such a fear of death but a fear of other people dying. Call it an attachment disorder, but it can be triggered even when someone leaves the room. At the support group I joke that if anyone is fifteen minutes late, they must be dead and we must begin mourning immediately. That's what I do when I'm trying to distract myself from very real dread I can feel twisting my gut.

http://www.dullneon.com/randomnotes/images-videos-and-other-content/2011/11/mel_blanc-speechless.jpg
Years after this drawing was first printed in memory of the voice actor Mel Blanc, I saw it for the first time and it triggered 'an attack'. I find it difficult to watch the original cartoons voiced by Blanc now

On Monday morning this phobia crashed into my social isolation; I'm not just in danger of losing the people I know but people I could and should have known if not for my low social tolerance. I do not have the right to feel loss the way Karen's friends and family do, it's downright inappropriate and if I saw a gatecrasher at the funeral of someone I knew and they were bawling their eyes out, I'd find that really creepy. But it's that position I feel myself in: the gatecrasher. In my mind I haunt the dead and ridicule myself as to not act on it.

I'm glad I can write it, because otherwise I'd be a weirdo that actually does that without any other outlet. So maybe that is why the others can talk about their icky stuff: the alternative is going crazy and waving soiled adult nappies around in public. Reality is our detractor, we can not reason with it- it can only be beaten by being made into a joke. Something tragic can instead be made into something to smile about. I hope that in the last week after she got her proper ESA entitlement, Karen looked back on the previous months and found lots of things funny, a cathartic last laugh. May she rest in peace.

They will not grow old as we that are left grow old.
Age shall not weary them, nor the years condemn. 
At the going down of the sun and in the morning, we shall remember them.

2 comments:

  1. Yes Karen Sherlock RIP.


    http://ssac.independent.gov.uk/pdf/universal-credit-regs-call-for-evidence.pdf

    ReplyDelete
  2. http://ssac.independent.gov.uk/consult.shtml

    ReplyDelete