See, here’s the thing. When you’re disabled or ill and unable to work as a result, your entire life is controlled by other people. And you have none.
It all starts with the GP. I, surely, am the person who best knows how my condition affects me, yet my GP – who sees me for ten minutes once every three months, if I’m lucky enough to get an appointment, gets to decide whether I’m worthy of being signed off or not.
I am at the mercy of the DWP, who decide whether that qualifies me for ESA or not.
Then I get to fill out forms once every two years and maybe if I’ve given enough gory and humiliating details – because we *all* know what “do you need help with self-care” means, don’t we? – the DWP will decide I’m still eligible for my mobility and care components of DLA.
All of these things depend on the other, and if one goes awry, the whole lot comes crashing down. GP late with the sick note or refuses to give you one? No benefits for you, love. No benefits? Oh, you’re not eligible for housing benefit any more. Yada yada yada.
I am at the mercy of landlords and agents who refuse to rent to tenants on benefits.
I am at the mercy of my current agent, who is the only agent within a ten mile radius that would rent to me because I’m on benefits. If I put *one* foot wrong, or make *one* too many maintenance requests, or piss them off in *any* way shape or form, they can decide to not renew my tenancy, and then what? See above.
I am at the mercy of my local council, who refuse to pay the full amount of rent in housing benefit for my flat despite it being the only one I was eligible for. Yes, its more than the LHA for this area, but it was *the only landlord that would accept me on benefits*. So I apply for a discretionary housing payment. They refuse that too, but say they *will* pay my moving expenses to a cheaper flat. To where? Did they not understand the bit where I told them that no other agent in the area will rent to me? I’m paying £150 a month on top of my housing benefit, from my disability benefits, just to cover the rent.
I am at the mercy of that thought in your head that says “what if you’re walking down the street a little bit too fast that day and someone you know sees you and reports you?” What if they see you walking round the park, trying to build up your muscles? Or in Sainsbury’s with only one crutch because y’know, you have to carry a basket *somehow*? Or, god forbid, having *fun*? People do that, you know. They report people for disability benefit fraud because they’re indignant that we “get something for nothing.” So whenever you’re outside your front door, you’re constantly on your guard. “If I do this, how will it look… just in case?” It’s fucking exhausting.
Yeah, sure, I “get something for nothing”. But you know what the trade off is? At this point in time I can’t think of one aspect of my life that I have any control over at all. Not one. I can’t control my income. I can’t control where I live. I can’t even really control what I do on a daily basis, because so much of it depends on how I feel when I wake up and you know, there’s *always* that thought in the back of my mind that my parents planted there when I was seven that goes “If you’re not well enough for school, you’re not well enough for fun stuff either. You can stay on the sofa and watch TV or read, and that’s it”. Psychology to see if you’re swinging the lead to get out of PE, of course, but you know what, it’s still in my head. I don’t do anything fun. Because I’m “unwell”, and I still feel like I’m not allowed to.
And that leeches over into your personal life, too. I can’t control when I speak to people or have social contact, because don’t you know people who work are busy and their time is more important than yours, and therefore you must fit in with them? After all, you’ll be at their beck and call whenever *they* decide it’s time for some contact, won’t you – because what else have you got to do all day? I can’t even control when I don’t have contact, because I have an anxious father who will call and call and call repeatedly every.single.day until he gets hold of me and it’s easier just to pick the damn phone up and get it over with, even when I’m doing something else and am yelling “oh go AWAY!!!” at the ringing phone. Sometimes, perversely, I just want a fucking day to myself, so I ignore it, only for it to start again at 9 the following day. And he wonders why I don’t go home.
If this was your life, wouldn’t you be angry? Because I am. I spend most of my life livid, and trying to control it. I am just this seething ball of anger because I am 42 years old and I have no control over my life at all and it has no outlet.
Today, after four years of this shit, I finally lost it – with a cobbler, of all people, who overcharged me by a paltry two pounds. Two pounds. Ridiculous. But it was the straw the broke the camel’s back. It went like this: he told me a reheel would be £7, charged me £9, which I didn’t notice until *after* I’d punched in my PIN, got arsey with me about it, swore he’d told me 9 when I knew damn well it was 7, and when I demanded my boots back and asked for a refund for a job he hadn’t yet done – because I was *fucked* if I was giving my business to someone who’d overcharged me and then lied, even if he was trying to cover up an honest mistake – he refused. So I yelled at him to give me my fucking boots back. Because dammit, I am SICK of being controlled and this asshat was trying to control me over two fucking quid. How dare he? What gives him the fucking right? And so he threatened to call the police.
(He also jumped over the counter and threatened me, and called me a cunt, after which I yelled at him some more, and told him that if he wanted to physically threaten me to go right ahead because which one of us was the one carrying two huge metal sticks in her hands?)
I ended up losing my whole nine quid. Because I could not be *fucking* bothered to fight any more. (I did get my boots back, though).
So I called the bank. Told them what happened. Asked them to help because I’d paid on the card. Can they stop the payment? Refund the money? Anything? No dice. Tough. But the guy jumped over.the.fucking.counter and threatened me, I had no choice but to leave. Still no dice. You should have looked more closely at the machine. Computer says no, as usual.
And it’s at this point that I drove home and found myself wanting to put my foot on the accelerator and drive head first into a wall.
I am so sick of fighting. My whole life is about fighting. Fighting the GP, my landlord, the DWP, the council, essential things that people not in my position don’t have to think about. Fighting my own body; that’s a biggie. Fighting idiots like this guy in the shop. Fighting people who make me feel *this.fucking.big*, because dammit, I do *not* see why I should let them. Fighting people who’ve shat on me – my asshole of an ex who lied to me for god knows how long, for example. I spent two entire years fighting him and it nearly hospitalised me. Fighting people who claim to be friends but who don’t give a fuck, really, because if they did, they’d *be* here. There’s one in particular who was like a sister to me. These days, she sends me these “True friendship survives blah blah blah” bullshit cards, but you know what? She hasn’t been to see me since I came back to London. She expects *me* to do all the running. Where was she when I was flat on my back with a bit of my spine dislocated? Where was she on the day of my mum’s funeral? (On a dirty weekend with her boyfriend, that’s where, which was more important than cremating my mother, apparently).
I’m sick of being shat on, too. Just for the record.
What do I have to *do* to not be fucking shat on any more, and to get some control? Be a nicer person? I’ve tried that; I just get walked all over.