More or less cross-posted at Single Lens Reflections
I've had a very busy and exhausting week, but really wanted to participate in the One Month Before Heartbreak blogswarm, campaigning against UK disability benefit cuts and in particular, the proposed abolition of Disability Living Allowance. But I haven't been able to write anything. I was lamenting this to Stephen and we decided to have a IM chat about it and use that, however it came up. So it is a little cringe-worthy, but better than nothing.
Goldfish: A few months ago, I mentioned to my new GP that my DLA was up for renewal. He warned me that if I got turned down, I shouldn't take it personally - he knew many people who were being refused now, despite having very severe impairments. I know not to take it personally, of course, and yet the current system, political rhetoric, media coverage and the tone of proposed reforms are such that anything we have to do with disability benefits feels very very personal.
Stephen: And indeed it is personal. As much as it'd be nice to live in a communists utopia, we need money to live and as such are reliant upon national insurance to pay out for our survival. But not only that, we, the disabled, are made to jump through hoops to determine whether or not we're capable of work. Which is especially galling when the hoop jumping can be as difficult or impossible as work.
Goldfish: "The disabled"? You're proposing to put this on my blog, honey.
Stephen: You know me - I call a spade a shovel. Dear reader, please forgive my horrendous grasp of correct terminology. I care about you all deeply, even though I'm insulting you at the same time.
Goldfish: I think another thing which makes it so personal is the fact that politicians talk about the workshy and other variations on the undeserving poor, the media take that a step further and render most of us scroungers or cheats, but then people around us use the same language - worse language even than "the disabled". They talk about welfare cuts as a universally good thing because of the scroungers, because of the so-called disabled. And if they notice your discomfort, they insist that they don't mean people like you.
What they don't realise is that almost all claimants are people like you, and me. And we're not magically protected from the effect of cuts just because they happen to consider us worthy of protection.
Stephen: Okay okay not so subtle point taken. People who might not be quite so able but who are still dashingly handsome and/or ravishingly beautiful are, indeed, clumped together. I mean, the DLA form itself is only really relative just so long as you stick to a certain set of disabilities. If you're outside of those pre-defined multiple choice answers then you have to write a huge amount to try to explain why you don't fit in and yet why you still need this money.
Goldfish: And I imagine most people are outside those boxes; most disabled people aren't full-time wheelchair users, don't experience total blindness or deafness etc..
Stephen: Do you think that the forms mirror public perception? The good disabled person who's deserving of the money that they so generously donate from their children's piggy banks is the one who answers all those questions by ticking the top most box (and who, sadly, but also thankfully, might not live too long and so not be a long term financial drain)?
Goldfish: In fairness, I don't think the public feels very generous towards those who tick the top box of the mental health questions.
Stephen: True...as we saw recently in the aftermath of the Giffords shooting. The stance of Sheriff Dupnik was that the world was a safer place with the mentally ill locked up rather than integrated into the community. So our ideal disabled victim (because surely they are a victim - of a random virus, a terrible car accident [just so long as they didn't cause it] or, if possible, falling from a height whilst trying to save a poor little girl and her kitten from a tree house fire) is a full time wheelchair user, possibly also blind, very grateful and entirely sane. Is that even possible?
I'm not sure I'd be that sane after all that bad luck.
Goldfish: *rolls eyes
Goldfish: I will have to apologise to any heroic blind wheelchair-users who pass by my blog now.
In any case, we were talking about this issue of how difficult it is not to take this stuff personally. You've been trying to sort out your exam conditions for your final university exams.
(Do you like the subtlety there? - I should work on daytime TV.)
Stephen: Indeed. I'm studying for a BA in Classics via distance learning. Because of the setup, it's 100% exam graded. As you can imagine, that means that come exam time there's a considerable amount of pressure. Indeed, for the last few months I've been hell to live with, isn't that right, Darling?
Goldfish: Hades, sweetheart - I thought it was Hades?
Stephen: I've failed already. Anyway, because I'm a person who might not be quite so able but who is still dashingly handsome and/or ravishingly beautiful (or a PWmnbqsAbwisDH/RB to those in the know) I need some help when it comes to exam time. I get to take my exam locally, for example, rather than having to travel to London. And I am able to use a computer keyboard rather than handwrite. And in order to qualify for these I have to get a doctor's letter explaining that I'm a PWmnbqsAbwisDH/RB and so should be allowed these things. In my first year the system was so poorly set up that I wasn't aware as to whether I was going to get the special arrangements or not until two days before the exam.
So although I got the help I needed to make my chances as fair as the next wannabe classicist, I had a considerable amount of extra stress that none of the other candidates did.
Goldfish: (Incidentally, dear reader, he has not been at all difficult, only has occasional flashes of self doubt, such as "I've failed already." What this man doesn't know about the motivations of Ajax when he set upon his "wooly captives" is not worth knowing. )
(That's the lesser Ajax, by the way. Or is it the greater one?)
Stephen: (You know when I said - could you take the exam for me..?)
You were trying to make sure the exam conditions were sorted for this May, love. And like any large institution, the wheels were turning very slowly...
Stephen: Yes. I had been told that there would be no need to reapply, but things have changed and now I have to get a new doctor's letter. Of course, getting an appointment with the GP isn't that easy and I've got that booked for just over a week away. The expectation was that I should be able to get a letter posted off to them instantly, so straight away I wasn't conforming with the idea of what I should be doing.
Then there was the issue of a local exam centre. If you're one of the idealised disabled, the process of getting to London *shouldn't* be a problem. But for me it's impossible.
But the problem is...the people in the special needs department haven't specifically questioned these things. They just mentioned them (in, I think it's fair to say, a rather clumsy way. Even more clumsy than my terminology. Yeah, I know, I didn't think it was possible either). The problem is that I feel under pressure to conform to ideas of what I should be capable of doing. I feel that I am being judged. And, well, I *am* being judged. Someone has to look at my medical evidence and say whether what I'm asking is appropriate. But that's a horrible position to be in. Especially when I am actually paying for the privilege of taking the degree!
By the way, dear reader, Deborah's just popped to the loo. So we're alone now. We can talk about whatever we want! Have you seen the new Mercedes SLK? What do you think of the front end redesign? I'm afraid it's a bit too clunky to me. that sort of front heaviness works on the SLS, but then that's an entirely different vehicle...
Goldfish: Sweetheart, I think you are getting distracted.
Stephen: Er...yes, maybe.
Goldfish: When you got that e-mail from the Special Needs people, you said that you felt that they were suspicious of you?
Stephen: Yes. Well, just the act of asking again. When you're living with something, especially a disability, it leaves you very sensitive to any mention of it. Or it does me. Being told that they would collect the information so that they could make the 'right decision' upset me. What is the right decision? Is it right for me? For the university? For the world in general?
And what's right got to do with it?
If the world were right I'd not have to be dealing with extra process to get to a point of equality.
Goldfish: And I tried to reassure you that they probably weren't suspicious of you, just clumsy and uncreative in the way big institutions often are. But this is how we're made to feel. Like every need, however simple, has to be justified.
And this is the case in many areas. Lilwatchgirl is going through this with Access to Work, you've got this with your exam conditions, but I think it all comes down to the way that we talk about disability in society.
And so much of that is to do with politics, and so long as disabled people are a political scapegoat, so long as money-saving measures are so often focussed on us and how expensive we are, then people are going to think that it is the natural order of things that we have to justify our existence in that society.
Goldfish, so glad you are where you are !
Sally has recently returned, better but still battling, and so cross about the situation that has created OMBH:JD, so blogged it.
Is there anything that US PWD can do to help here? I live in the USA and am absolutely furious at what is happening in the UK right now.
I really don't know, Jo. But thank you for your support.
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