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gaiatheorist · 6 years

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At what cost?

‘This’ is very ‘me’, I’m on the edge of one of my low-phases, scrabbling not to fall into the Big Deep Hole, with fingernails that are splitting due to malnourishment, despite having the house stocked with enough food to survive an apocalypse. The bit of it that’s entrenched in me is ‘waiting for something to go wrong’, something has gone right, so I’m immediately paranoid about it being taken away, I’m self-sabotaging.

The thing that went ‘right’ was ‘winning’ my disability tribunal, I didn’t find a coin in a gutter, and buy a chocolate bar with a golden ticket in the wrapper. I had a catastrophic brain haemorrhage, which altered my life more than I was willing to admit for too long. Queen of cliches, when life builds a 10ft wall in front of me, I find a 12ft ladder. The DWP systems and processes are the 10ft wall in this instance, and, perversely, if you do manage to find and climb the ladder, a box will be ticked to say you’re ‘functional.’

How functional, and at what cost? Yesterday I saw a post entitled ‘Faking it’ on the Health Unlocked website, and over the last few weeks I’ve seen a lot of tweets about ‘not looking disabled’, and ‘not hitting thresholds for mental health support.’ It’s the ‘hidden disability’ angle, unknown numbers of us conditioned-to-cope, for myriad reasons. The easiest response to give to people who unhelpfully try to congratulate us for functioning by saying “I don’t know how you cope!” is “What’s the alternative?”, those of us who force ourselves functional, until we’re not any more, know that our functionality comes at a cost. There are many and varied reasons why we do it, unlike the ‘many complex reasons’ people are using food banks. (There’s a separate side-rant about an article I saw yesterday on Job Centre staff manipulating data collection on food bank referrals, to skew statistics on the known-number of people who can’t afford to eat. I’d explained and evidenced to my ‘Work Coach’ that I’d done everything I could to avoid using the food bank while my PIP application was stalled and delayed. I had the outcome on paper, but the potential of 6-8 weeks ‘processing time’ to actually see the money, 2 months of living on fresh air, there’s a box on the food bank voucher for ‘reason for hardship’, one of the options being ‘benefit delay’, the Work Coach ticked ‘ill health’, then proceeded to make multiple mistakes on the voucher, which made it virtually illegible for recording purposes. She did record the voucher-number on her system though, because I’d directly asked “Can I have a food bank voucher, please?”. I suppose people who don’t ask directly will be ‘signposted’ with a leaflet instead, no voucher-number to be recorded, and the food bank staff won’t want to turn them away.)

Side-tracked there, wasn’t I? That’s one of my personal costs, my executive functioning is impaired, and I frequently struggle with ‘attentional switching’, I’m like a dog chasing a rabbit, I won’t come back to heel until I’ve caught the rabbit, or ended up stuck in the hole. I’m not going to hypothesise on other peoples’ reasons for ‘coping’ in whatever way works for them, there isn’t a universal model, each of us pick through whatever is left of our metaphorical ‘tool-kit’, and make our adaptations based on that. (Yes, I know, I’m guilty of trying to use tools I don’t have any more, effectively spending next month’s rent...) We’re one big wonky kitchen drawer, we all have our tricks and knacks, and we all have episodes when the drawer comes completely off the runners, and we either sit on the floor and cry about it, or start picking things up, and calling the potato-masher things we wouldn’t say in front of grandma.

‘Fatigue’ and ‘fluctuating’ are familiar terms for me now, and I’m exhausted from trying to explain them to people. When non-disabled people hear ‘fatigue’, they conflate it with tiredness, and suggest chamomile tea, sleep-hygiene, and all manner of unhelpfully-helpful ideas. I have brain damage, parts of my brain were crushed, so my synapses and neurons and such aren’t configured in the same way as they were ‘before’, they’re on diversion-routes around the dead bits of my brain. “No electronics in the bedroom” is a perfectly valid strategy for people who don’t sleep because they’re checking their phone, or playing games, with me, it just leads to a skewed-behaviour of getting up, and coming downstairs when I wake up at 3am. When I say ‘fatigue’, what that means to me is a complete mental shutdown, my brain just doesn’t ‘work’, so the relay of instructions to my muscles and nerves doesn’t work either. My ‘normal’ is being incapacitated to some degree every single day, my evenings are a complete write-off, because previously-normal things, like standing upright, or remembering I’ve put a pan on the hob take more energy than I have available. I have to ‘think about’ a lot of things that used to be subconscious now, and a lot of the adaptations I’ve normalised are incredibly draining and isolating.

I ‘can’ attend medical appointments, because I know that if I don’t, I’ll likely be bounced out of thee system. I need to book myself in for my next brain scan, and I’m avoiding doing it, because I know that the physical process of getting there and having the MRA scan will be so draining that there’s the potential for me to get very badly disorientated and lost on the way home. It’s ‘just’ a monitoring scan, and it’s ‘only’ two bus-journeys. I’ve probably been to that hospital 20-odd times since the haemorrhage, I ‘know’ where it is, and how to get there. (There’s me, beating myself up about not being able to do something ‘simple.’, playing smack into the ‘cost’ of reflecting-back other people’s ‘only’, and ‘just’ terminology. I frustrated the ex by insisting on going for my scans alone, rather that ‘letting’ him drive me, I thought I could ‘stretch and challenge’ my way through. In the last full week I ever worked, I’d had to advise a new colleague that I wouldn’t be at my desk on the Wednesday afternoon, because I had a scan. “Oh, OK, what are you having scanned.” “Just my brain.”. That was a stupid, ridiculous coping mechanism, because most people could not deal with knowing that I’d had two (three) rounds of brain surgery, and was just trying to fit back into my old place in the world.)

Every aspect of my life now is a juggling act, things that were ‘only’, and ‘just’ before aren’t any more, and I have built up ludicrous and over-complicated mechanisms and routines in order to have some semblance of functionality. I ‘just’ have to go to the Job Centre tomorrow. All of the documents and evidence I need/want to show the work coach have been in a neat pile, ready to go, for 3 days. The appointment is the earliest one she has available, she’s normalised the fact that I don’t ‘do’ afternoon appointments. (While the system she’s working within still has an overarching expectation that I’m available for any/all work...) I’ll allow half an hour to walk there, just short of a mile, but I allow time-and-one-half of my previous walking pace, in case I have to deviate my route, for hills I can’t climb, roadworks that overload my sensitive brain, or light coming through fences or trees at ‘weird’ angles. Of course, I won’t ‘just’ go to the Job Centre. The effort involved in walking into the village is draining, I can’t do that every day, so I’ll bundle-up the other tasks that can be done into the one trip. At a cost. Financially, I’ll pay a bill that isn’t due for two weeks, and go into the supermarket, to avoid multiple trips to the corner shop for over-priced ‘bits’. The lighting and noise in the supermarket, post office, and Job Centre will overload me, and I’ll spend the rest of the day kicking myself for being unable to do pretty much anything else. (The ex is working overtime for the summer ‘shutdown’ at his work, the days he has our son have changed, messing up the days I cook, luckily, the boy is with his grandparents on he afternoon of the Job Centre appointment, he’s seeing too much of the costs I pay recently. “Do you need me to rummage for food today, Mother?” has become too frequent an occurrence, on the days he can see that I have no ‘spare’ energy to cook.)

So, tomorrow I’ll find out what my new ‘claimant commitment’ is. The generic-vague wording on the letter refers to sanctions being imposed if I fail to complete ‘tasks your work coach sets, to prepare for work.’, I’m cringing at the prospect of being sent to the town centre, for ‘courses’ on how to format an application letter for work that the systems have now decided I have ‘limited capacity’ for. The costs of those wouldn’t just be the bus-fare, the ‘lost’ hours sitting in a room being patronised, or the sensory overload of being out of the house. The genuine cost to me is knowing how hopelessly skewed these systems are, that I have a letter declaring ‘limited capacity’, but will be allocated generic-universal tasks that will eat into that capacity.

I’m one of the ‘lucky’ ones, that the 2017 benefit cuts won’t have the full impact on. (Unlucky that I didn’t understand the systems ‘then’ as well as I do now, if I’d been able to navigate better then, and not been ‘too proud to beg’ when the union rep told me to sign on at the Job Centre before the termination of my employment, I would have been just within the cut-off window.) I’m lucky because I was ‘awarded’ PIP disability benefit, but the cost of that protracted process has been immense. Almost 18 months of paranoia about being ‘sent for’ a computer-generated job I knew I wouldn’t be capable of sustaining, on top of the ‘guilty until proven innocent’ DWP disability process have taken a huge toll on me. I have the PIP-award, so the stealth-dismantling of the Employment Support Allowance system won’t hit me as hard as it will some. (Nine months in arrears with all of my utility providers is still a hit, and I need to factor in time to speak to them to resolve that next week, juggling functional hours again, I can’t spare the processing time this week, because I have the Job Centre appointment, and my son has a resit exam that’s causing him anxiety.)

The cost to other people, that the ‘ESA’ system is being subsumed into Universal Credit will have an impact. I’ve had various professionals completely unaware that the old ‘allowance’ doesn’t actually exist any more, that the goalposts have been moved, and people with ‘some’ disabilities will no longer qualify. I partially qualify, my ‘limited capacity’ box has been ticked, which is every bit as effective in real terms as a kid bringing a note from their Mum, to be excused from PE because they have a chest infection, and the PE teacher deciding that means they can ‘stand and watch’, in the rain. Job Centre frontline staff are as medically trained as PE teachers, and those of us with disabilities will be sent out onto the hockey pitch, to hand out bibs, or watch corner flags, to make sure nobody steals them, in the skewed-view that we’ll have a sense of inclusion and achievement through doing something we know is worthless.

It’s the ‘universal’ assumption that’s so damaging, both in terms of the ‘if you can walk, you can dance’ mindset within the unemployment system, and the wider nastiness that’s starting to be acknowledged. Invisible disabilities are difficult. They’re difficult to have, and they’re difficult to understand. I ‘can’ usually wobble far enough down the bus not to use the priority-disabled seats, but that’s because I micro-manage my use of public transport, setting all my appointments for as early in the day as I can, when I’m more lucid and functional. I haven’t been refused a ‘disabled’ seat, but some people have. There’s that insidious ‘not enough’ mentality creeping back in, with the various global issues making everybody anxious, making some people ‘kick downwards’. In the UK, the government is still blithely berating Blighty to belt up and be resourceful. That will rattle the cages of the minority who see disabled people as quadriplegics-only. (Much like the DWP ‘Work Capability Assessment’ system, which has notes on assessing the ability of a paraplegic to complete tasks using their other limbs...)

The majority of people won’t see the hoops and hurdles disabled people need to manoeuvre through. A significant and vocal minority will announce that people are ‘faking it’, like some obscure uncle or neighbour they remember in the 1980s, who claimed disability for a glass back, and worked on the side shifting timber. (Yes, that’s a weird example, it’s one I overheard two older men discussing in the doctors waiting room last week.) I’m mildly irascible about the ‘universal’ response to most things. “Running helps some people to manage depression!”, does it, BBC news? That’s nice, some people are allergic to shellfish, which is exactly as relevant, because it only applies to ‘some.’ people, not all. The mental cost of explaining to people that there are certain things I can’t do, and certain things I find very difficult has become too much for me, so I’ve stopped doing it. The last couple of years have thrown me into enormous introspection about what I ‘can’ safely do, with the Job Centre on one side assuming I can take ‘any/all suitable vacancies’, and the PIP system on the other side, stating ‘as she can manage her own appointments, she has no cognitive impairments.’ (Side-rage, at having to write things down multiple times to secure them, and have visual reminders, multiple mobile/email reminders, and considerable anxiety about accessing every damned appointment...)

The majority of people, those without disabilities or other impairments, only see what we ‘can’ do, because most of ‘us’ end up working-around what we can’t do. At a cost. That the majority don’t see.

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