#or the ex who sabotaged my having a support person for top surgery/almost sabotaged my top surgery who lived with some of them
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Being misgendered repeatedly by an ex friend because I'm on T and apparently I'm therefore not allowed to be "they /Them" anymore & must be he/him while my flatmate repeatedly corrected him while he tried to tell them I was crazy /concern troll them about my mental health because I'd had enough of his abuse & gone no contact has got to be one of the most ridiculous things that's happened to me this year ....
#Almost as ridiculous as the girl who religiously defends every abuser responding to this by going terf on me#Or their other friend who's a predator coming to our house at midnight screaming slurs banging on the door threatening to break our windows#like holy shit I'm lucky I didn't end up hate crimes by them and I'm still anxious it might happen after their creepy friend's âvisitâ#or the other girl who was trying to pressure me into sex terfing out at my flatmate#or the ex who sabotaged my having a support person for top surgery/almost sabotaged my top surgery who lived with some of them#abusive friendships#Therapy is helpful but holy fuck these people were dangerous to my mh & I shouldn't have put up with it for so long#also being told I was going to die during top surgery by my own mother lol the fuck is my life#trauma#seriously I get panic when I hear someone who sounds like him now and it sucks#im scared because he's bragged about trying to make someone destitute/homeless due to being professionally wronged in the past#&idk what he'd feel motivated to do to hurt or silence me for speaking out about his abuse and connections to a predator#but fuck it what he and the others turned a blind eye to was wrong and no ammount of them threatening witnesses or victims can make it okay
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At what cost?
âThisâ is very âmeâ, Iâm 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 thatâs entrenched in me is âwaiting for something to go wrongâ, something has gone right, so Iâm immediately paranoid about it being taken away, Iâm self-sabotaging.Â
The thing that went ârightâ was âwinningâ my disability tribunal, I didnât 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 youâre âfunctional.âÂ
How functional, and at what cost? Yesterday I saw a post entitled âFaking itâ on the Health Unlocked website, and over the last few weeks Iâve seen a lot of tweets about ânot looking disabledâ, and ânot hitting thresholds for mental health support.â Itâs the âhidden disabilityâ 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 âI donât know how you cope!â is âWhatâs the alternative?â, those of us who force ourselves functional, until weâre not any more, know that our functionality comes at a cost. There are many and varied reasons why we do it, unlike the âmany complex reasonsâ people are using food banks. (Thereâs 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 canât afford to eat. Iâd explained and evidenced to my âWork Coachâ that Iâd 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 âprocessing timeâ to actually see the money, 2 months of living on fresh air, thereâs a box on the food bank voucher for âreason for hardshipâ, one of the options being âbenefit delayâ, the Work Coach ticked âill healthâ, 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 Iâd directly asked âCan I have a food bank voucher, please?â. I suppose people who donât ask directly will be âsignpostedâ with a leaflet instead, no voucher-number to be recorded, and the food bank staff wonât want to turn them away.)Â
Side-tracked there, wasnât I? Thatâs one of my personal costs, my executive functioning is impaired, and I frequently struggle with âattentional switchingâ, Iâm like a dog chasing a rabbit, I wonât come back to heel until Iâve caught the rabbit, or ended up stuck in the hole. Iâm not going to hypothesise on other peoplesâ reasons for âcopingâ in whatever way works for them, there isnât a universal model, each of us pick through whatever is left of our metaphorical âtool-kitâ, and make our adaptations based on that. (Yes, I know, Iâm guilty of trying to use tools I donât have any more, effectively spending next monthâs rent...) Weâre 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 wouldnât say in front of grandma.��Â
âFatigueâ and âfluctuatingâ are familiar terms for me now, and Iâm exhausted from trying to explain them to people. When non-disabled people hear âfatigueâ, 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 arenât configured in the same way as they were âbeforeâ, theyâre on diversion-routes around the dead bits of my brain. âNo electronics in the bedroomâ is a perfectly valid strategy for people who donât sleep because theyâre 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 âfatigueâ, what that means to me is a complete mental shutdown, my brain just doesnât âworkâ, so the relay of instructions to my muscles and nerves doesnât work either. My ânormalâ 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 Iâve put a pan on the hob take more energy than I have available. I have to âthink aboutâ a lot of things that used to be subconscious now, and a lot of the adaptations Iâve normalised are incredibly draining and isolating.Â
I âcanâ attend medical appointments, because I know that if I donât, Iâll likely be bounced out of thee system. I need to book myself in for my next brain scan, and Iâm avoiding doing it, because I know that the physical process of getting there and having the MRA scan will be so draining that thereâs the potential for me to get very badly disorientated and lost on the way home. Itâs âjustâ a monitoring scan, and itâs âonlyâ two bus-journeys. Iâve probably been to that hospital 20-odd times since the haemorrhage, I âknowâ where it is, and how to get there. (Thereâs me, beating myself up about not being able to do something âsimple.â, playing smack into the âcostâ of reflecting-back other peopleâs âonlyâ, and âjustâ terminology. I frustrated the ex by insisting on going for my scans alone, rather that âlettingâ him drive me, I thought I could âstretch and challengeâ my way through. In the last full week I ever worked, Iâd had to advise a new colleague that I wouldnât be at my desk on the Wednesday afternoon, because I had a scan. âOh, OK, what are you having scanned.â âJust my brain.â. That was a stupid, ridiculous coping mechanism, because most people could not deal with knowing that Iâd had two (three) rounds of brain surgery, and was just trying to fit back into my old place in the world.) Â
Every aspect of my life now is a juggling act, things that were âonlyâ, and âjustâ before arenât any more, and I have built up ludicrous and over-complicated mechanisms and routines in order to have some semblance of functionality. I âjustâ 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, sheâs normalised the fact that I donât âdoâ afternoon appointments. (While the system sheâs working within still has an overarching expectation that Iâm available for any/all work...) Iâll 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 canât climb, roadworks that overload my sensitive brain, or light coming through fences or trees at âweirdâ angles. Of course, I wonât âjustâ go to the Job Centre. The effort involved in walking into the village is draining, I canât do that every day, so Iâll bundle-up the other tasks that can be done into the one trip. At a cost. Financially, Iâll pay a bill that isnât due for two weeks, and go into the supermarket, to avoid multiple trips to the corner shop for over-priced âbitsâ. The lighting and noise in the supermarket, post office, and Job Centre will overload me, and Iâll 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 âshutdownâ 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, heâs seeing too much of the costs I pay recently. âDo you need me to rummage for food today, Mother?â has become too frequent an occurrence, on the days he can see that I have no âspareâ energy to cook.)
So, tomorrow Iâll find out what my new âclaimant commitmentâ is. The generic-vague wording on the letter refers to sanctions being imposed if I fail to complete âtasks your work coach sets, to prepare for work.â, Iâm cringing at the prospect of being sent to the town centre, for âcoursesâ on how to format an application letter for work that the systems have now decided I have âlimited capacityâ for. The costs of those wouldnât just be the bus-fare, the âlostâ 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 âlimited capacityâ, but will be allocated generic-universal tasks that will eat into that capacity.
Iâm one of the âluckyâ ones, that the 2017 benefit cuts wonât have the full impact on. (Unlucky that I didnât understand the systems âthenâ as well as I do now, if Iâd been able to navigate better then, and not been âtoo proud to begâ 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.) Iâm lucky because I was âawardedâ PIP disability benefit, but the cost of that protracted process has been immense. Almost 18 months of paranoia about being âsent forâ a computer-generated job I knew I wouldnât be capable of sustaining, on top of the âguilty until proven innocentâ 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 wonât 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 canât spare the processing time this week, because I have the Job Centre appointment, and my son has a resit exam thatâs causing him anxiety.)Â
The cost to other people, that the âESAâ system is being subsumed into Universal Credit will have an impact. Iâve had various professionals completely unaware that the old âallowanceâ doesnât actually exist any more, that the goalposts have been moved, and people with âsomeâ disabilities will no longer qualify. I partially qualify, my âlimited capacityâ 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 âstand and watchâ, 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 weâll have a sense of inclusion and achievement through doing something we know is worthless.Â
Itâs the âuniversalâ assumption thatâs so damaging, both in terms of the âif you can walk, you can danceâ mindset within the unemployment system, and the wider nastiness thatâs starting to be acknowledged. Invisible disabilities are difficult. Theyâre difficult to have, and theyâre difficult to understand. I âcanâ usually wobble far enough down the bus not to use the priority-disabled seats, but thatâs because I micro-manage my use of public transport, setting all my appointments for as early in the day as I can, when Iâm more lucid and functional. I havenât been refused a âdisabledâ seat, but some people have. Thereâs that insidious ânot enoughâ mentality creeping back in, with the various global issues making everybody anxious, making some people âkick downwardsâ. 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 âWork Capability Assessmentâ system, which has notes on assessing the ability of a paraplegic to complete tasks using their other limbs...) Â
The majority of people wonât see the hoops and hurdles disabled people need to manoeuvre through. A significant and vocal minority will announce that people are âfaking itâ, 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, thatâs a weird example, itâs one I overheard two older men discussing in the doctors waiting room last week.) Iâm mildly irascible about the âuniversalâ response to most things. âRunning helps some people to manage depression!â, does it, BBC news? Thatâs nice, some people are allergic to shellfish, which is exactly as relevant, because it only applies to âsome.â people, not all. The mental cost of explaining to people that there are certain things I canât do, and certain things I find very difficult has become too much for me, so Iâve stopped doing it. The last couple of years have thrown me into enormous introspection about what I âcanâ safely do, with the Job Centre on one side assuming I can take âany/all suitable vacanciesâ, and the PIP system on the other side, stating âas she can manage her own appointments, she has no cognitive impairments.â (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...) Â
The majority of people, those without disabilities or other impairments, only see what we âcanâ do, because most of âusâ end up working-around what we canât do. At a cost. That the majority donât see.     Â
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