A Day In The Life: Holi

00.00 – Happy midnight! And happy Holi. Close enough to the equinox. Lying in bed watching TV with a dislocated shoulder and both hips subluxed.

01.40 – Fall asleep.

09.30 – Alarm goes off, wake up. In enough pain that I can’t move, think, or get fully conscious enough to roll over and turn off alarm and take medication. Drift, getting more and more panicky.

09.38 – Twin bell alarm clock winds down. Identify that the pain is mostly in my lower back and hips. Take 15mg slow-release morphine, 75mg diclofenac.

10.11 – Wake up, in pain, after strange dream. Relocate wight wrist.

10.12 – Try to sit up to take pressure off right hip, which is subluxated. Shooting pains across pelvis and down right leg.

10.17 – Start hand-typing essay, right wrist luxates more than once per minute for the next hour as I work. Throat probably too sore and creaky from previous day’s morphine to speech-to-text effectively.

11.35 – Call grandparents to say hallo since I miss them. Dislocate shoulder whilst holding phone up to ear.

12.00 – Call pharmacy to check that my prescription, due for delivery today, is on the van. Not only is it not on the van, but it’s not even back from the GP’s. Told I’ll get a call back later.

12.46 – Get call back, pharmacist will deliver my medication by hand at 5.30 tonight. Once again, a fuck-up higher up the chain has put them out.

13.05 – Right wrist dislocates. Reduce with manipulation. Takes a long time, hurts a lot.

14.01 – Right shoulder still dislocated.

14.02 -Reduce right wrist.

14.06 -Strange crunching noise in lower back, whooshing sensation, feel a bit better.

14.18 – Attempt right shoulder reset, fail.

14.19 – Reduce left wrist.

14.20 – Right radial end of clavicle reduces, right glenohumal still a bit wrong. Right scapula moving.

14.29 – Tip of thumb spontaneously reduces, having been luxated at some point previously.

14.30 – Left medial head of clavicle starts migrating upwwards, making eyes water.

14.41 – right hand completely freezing, wrist still dislocated, pain shooting up to disloceted shoulder. Decide to try making a hot water bottle.

14.45 – Get up to make hot water bottle, shooting pains in right leg and back.

15.08 – Sit back down after eating, pain in lower back at lowest ebb so far today. Right leg feels like it’s trapped in a vice.

15.17 – Move downstairs, dislocating left shoulder in process.

15.36 – Mystery chest pain, which may or may not hve had anything to do with my shoulders both still being in pieces.

15.51 – Chest pain subsides – Possibly a luxated rib? Hands freezing cold, despite it being warm.

16.00 – Left shoulder starts reducing itself, hurts like hell.

16.23 – Right hip falls out of socket. Start losing consciousness.

16.51 – Prescription arrives, with no axsain and a note saying “Re; Capsaicin. Needs to see doctor.” I roll my eyes that they are worried about prescribing me chilli sauce. I phone the GP, and the receptionist tells me I need to book an appointment. First one available is the 8th of April, no phone appointments possible. She suggests that she can get a tube to me by tomorrow morning, when the pharmacy will be closed, and asks me to phone her back before seven to check that she’s actually done so. I am not filled with confidence.

18.49 – Drifted, until being woken up by by still-luxated right hip. Took morphine syrup.

20.08 – Rapid luxation and reduction and luxation again of right hip. Whole right leg is rotated outwards to the point that the foot almost points backwards.

21.59 – Took laxative in attempt to lessen pain in lower back (sometimes this works)

22.08 – Luxate both patellae whilst on toilet.

22.12 – Horrible chest pain starts up again. Suspect it’s luxated ribs. Back pain continues getting worse anyway.

22.14 – Right clavicle rotates forwards, luxating radial end.

23.00 – Retreat upstairs with sewing.

23.19 – Hands lock up, decide to rest.

00.00 – Realise that I’ve spent most of the day basically flattened by fatigue, confusion, exhaustion and unable to keep track of what’s been going on. Shrug shoulders, call it a productive day anyway.

 

Happy assorted spring festivals!

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Is it time to eat the rich yet?

I have a theory that the only people this will be read by are other disabled people, because we have been so isolated. If you’re an abled person and reading this, can you identify yourself in the comments? Doesn’t have to have your name, or anything, just a +1 or something. I just suspect that I’m preaching to the choir. All other comments are also, of course, welcome. First posts may take a minute to get through moderation though, since I don’t know how to change that setting.

 

Content: Eugenics, financial coercion, tories, politics, homelessness, medical coercion, swearing, food insecurity… The whole lot.

 

I have tried so fucking hard to keep the politics off this blog lately. Partly because I know that other people can say it better than I can and partly because it is so fucking depressing that even writing about it on my own terms makes me think life is not worth living.

Today is the budget. George Osborne declaring how he will make this country fit for “the Next Generation” and from what he’s doing it’s pretty obvious that our Next Generation will not include the disabled.

At first I’d thought it was all an accident, that it just so happened that all the cuts and all sanctions and the worst of the punishment disproportionately affected disabled people. It was very easy for me to imagine that, in the minds of the Tories, disabled people were just acceptable collateral damage in their war against the poor. But with the power of hindsight it’s obvious that the plan all along was eugenic.

 

We start off with the changes to disability living allowance. Suddenly for a disabled person to get an amount of money they could live on the have to be found not just “not fit for work” but they have to promise not to try to find work, or even to try self-employment above a ridiculously low threshold. Meaning that once a disabled person has been declared “not fit for work” it becomes very difficult for them to even try to return to the workforce – would you risk taking self-employment which could ruin your health if you knew that in taking that risk you would have the money taken away which you had been trying to live on, and that if your business failed it would be months or years before that money was restored to you if it was restored at all?

In addition to this, there is a savings cap of £6000. This sounds like a lot of money, but it won’t get you a deposit on a house, it won’t buy you a vehicle (especially not a wheelchair accessible vehicle or a vehicle with adapted controls), it won’t even buy many of the more expensive mobility aids such as tilting beds or maximally-supported powered wheelchairs.

So, in one fell swoop, disabled people are locked out of the workforce and their mobility outside the home is reduced.

At the same time, there have been massive cuts to social care budgets.Never mind the loss of the Independent Living Fund, there are now no councils in England (at least) which provide their own social care provision – the instead rely on private agencies. This in turn means that provision of carers, personal assistants, and other human-based help to disabled people has become more expensive and less available.

That, again, has reduced the mobility of disabled people outside the home. Many of us would describe ourselves not as “living” but as “subsisting”, “surviving”, or even “being kept in storage”.

The sum total of this to begin with has been to reduce the visibility of disabled people in the abled world. Less people now will have a disabled co-worker, less people will know a disabled person down the pub, and less people would describe themselves as having disabled friends. As such, to most abled people, the thought of the systematic persecution of disabled people does not bring to mind the face – a friend – who will be hurt, or even killed, by these policies. It’s tragic, but it’s tragic in the same way that the destruction of the rainforest or a melting ice flow or the extinction of a rare rhinoceros is. It’s a sad, but ultimately natural, result of an unavoidable natural process. Darwin himself tells us that the strong survive and the weak perish.

Also involved in the changes to disability funding has been a particularly cruel piece of legislation which stops disabled people from forming families. Much like housing benefit (landlord greed subsidy) does not allow the poor under-35 to live in anything more than a room in a shared house, if a disabled person lives with someone who is waged (Above a certain, low, point) they become ineligible for ESA. Effectively this means that if an out-of-work disabled person enters into a relationship with either an abled person or a disabled person who is able to work, their partner must financially support them in every way. Food, rent, bills. PIP is, after all, only supposed to cover the “extra costs of disability”.

Unless you are extremely well paid it is basically impossible to support a second adult on one person’s wage whilst maintaining any quality of life.

Thus many disabled adults are forced to either live in shared accommodation or live with their parents, even when it is detrimental to their health.

(Another cruel side-effect of this policy, since the DWP require a long “cooling off” period after a relationship has ended before awarding a disabled person the full allowance which would be granted to them as a single person. This can trap disabled people who live with their partners into staying in sub-optimal or actively abusive relationships long after they would otherwise have ended.)

 

So, disabled people are now;

  1. Living alone, or living with their parents
  2. Not socialising with abled people
  3. Unable to save money to have any kind of personal safety net, thus more totally reliant on the state

 

And then the media campaign began in earnest. 2010’s “when you leave the house at 8 AM, it’s natural to resent the man whose curtains are still closed” looks frankly tame and benign compared to more recent rhetoric.

Disabled people are “scroungers”. Disabled people are “a drain on the state”. Disabled people are “expecting something for nothing”.

Disabled people are getting “special treatment” and “your taxes are paying for it”.

Look at the comments under any article about NHS care or state support of disabled people, and you will see plenty of people who believe that disabled people shouldn’t have nice things, or shouldn’t own property, and should basically be granted the absolute minimum required to survive (something like the diet of porridge whilst living in a three deep shelving system) and that to ask for anything more is greedy.

It’s no coincidence that disability hate crimes are on the rise, and that most disabled people I know live in fear. The tabloid press colludes with the government to paint disabled people as suspicious, dishonest, and not-like-us, not “full members of society”. I’ve been spat on, kicked, had people attempt to take my dog away from me, been denied taxis and buses, been pushed to the back of queues, all the while the familiar litany drones from the crowd; “Cripple”, “Scrounger”, “Faker”, “Freak”, “Kill yourself”, “Spending my money”, “How dare you”, and the worst of them all “I’ll dob you in”.

 

The implications of “I’ll dob you in” are startling. For the blissfully unaware; the Department of Work and Pensions has a hotline which you can call to report disability benefit fraud. The only evidence required is to know a disabled person’s name, and to have seen them doing something suitably un-cripple like. This could be as simple as standing up, opening the door, smiling, going to a nightclub, riding a motorcycle, basically anything other than lying in bed. It doesn’t matter if the person has a fluctuating condition and exhausted themselves for a week in order to get a chance to sit by the canal for an afternoon. If you saw them enjoying the sunshine, and that annoyed you, you can tell the Department of Work and Pensions and their benefits will be immediately stopped pending a reconsideration.

As you can imagine this results in a lot of vexatious calls. Got a grievance with a disabled person? Instead of having an argument you could just get the government to starve them for six months. Much easier. And, best of all, calls to this hotline are anonymous meaning that you can keep making vexatious claims as often as you like with no chance of retribution.

 

Effectively, the government have enshrined the right for the people to armchair-diagnose the disabled, and hold this armchair diagnosis in higher regard than the collective opinions of the disabled person and their own doctors, and even higher than the opinions of their own assessment team.

To add to the count, disabled people are now;

  1. Living alone, or living with their parents
  2. Not socialising with abled people
  3. Unable to save money to have any kind of personal safety net, thus more totally reliant on the state
  4. Living in fear of casual hate crimes, encouraged by the press
  5. Living in fear of “not looking crippled enough” in case a stranger decides to report them

 

And then the cuts began.

First, the privatisation of removal of many NHS services which are largely used by disabled people. Ever tried to get a physio appointment with a long-term condition? How about looked at the length of surgical waiting lists? Never mind guidance on reducing the prescription of needed painkillers and other medications because they are “too expensive”.

 

People believe that. It’s easy to believe that disabled people are just “too expensive” to support – We have all these strange demands, and we make planning things more complicated, and, honestly, who knows any really disabled people anyway? And obviously the ones on painkillers are junkies, and the ones who use a wheelchair part-time are fakers, and anyone who uses a blue badge or a priority seat is taking a lend, so why should we support these horrible, unproductive, useless eaters anyway?

Now, it’s the cuts to ESA (Why should a cripple get more money than any other jobseeker?) and then finally, today, the planned cuts to PIP (Wherein any disabled person who uses an appliance instead of human help will no longer qualify).

 

The result is that many disabled people, possibly even most disabled people, will have no money at all unless they can find and keep work. Which, with some disabilities, will just be impossible – It’s hard to find an employer who will let you take infinite sick days for pain, or to sleep in the afternoons, or work variable shifts, when often you might have only minimal education due to a lack of university provisions for disabled students, and the prohibitive cost of university for most people anyway.

 

The real-world result of this is that disabled people will die. We are already dying. The government is reluctant to release figures about deaths after benefit sanctions, deaths after being found for work, and deaths whilst waiting for benefits to be awarded. That’s even before we look at figures for homelessness, housing vulnerability, morbidity associated with poor diet, poor mental health outcomes due to lack of physical security or social inclusion, and all the other likely outcomes of taking a population who are already very sick and discriminated against and taking away their money and their rights.

 

Recent conversations between myself and other disabled people have tended to all point towards a similar conclusion; that the next step will be something like a workhouse. Now that we are entitled to less monetary compensation, and without the support that has helped us to find work in the past, it might seem like an obvious solution to the problem. House the disabled people in a big Institute somewhere, give them simple work sewing underpants, and in return for that work they will get regulation clothing, and medications, and room in a bunkhouse. They won’t need money; everything they could possibly need will be provided. Asking for choice in what to eat, or the opportunity to socialise, or raise a family, or keep pets, or live where they want, or pursue a hobby or education or a career of their own choosing, will be parsed as greed. And the general populace will say “isn’t that nice? The government have made it so easy to care for those poor people. I remember before the workhouses, they all lived in poverty and alone and afraid.” And, of course, the government will make a tidy profit selling our labour to the kind of multinational corporations that they are so keen to protect and attract to our shores.

 

Considering everything else, this doesn’t feel far-fetched any more. The UN is investigating the UK for grieviously violating the human rights of disabled people. This isn’t just a few frightened people who think the sky is falling.

One of these outcomes could have been an unfortunate accident. Two or three of them, perhaps a thoughtless snowballing of circumstances, which would obviously be rectified as soon as it was noticed. But all of them? This is a campaign. This is eugenics. This is a naked attempt to isolate, scapegoat, weaken and eventually (judging by history) murder an entire sector of the population, whilst blaming them for the sins of the rich.

 

If I don’t survive this government, know at least that I saw it coming.

 

Violations

Yesterday was shit. Just really, really bad.

Started off with the social workers, which was just awful in its own right. As much as they say that it’s all up to me what happens and things like that, I feel like I’ve been sort of trammelled into things.

The vague plan so far is that I will get a “Direct Payment” into a “Managed bank account” – Meaning that I will not see the money, so I won’t be frustrate and resentful that I’ve “got money” that I’m not allowed to spend on things that’d immediately help me, but only on specific help that other people think that I need.

It was a key point of mine that I resent the sense of people meddling in my affairs and telling me what to do. I know that, logically, the same thing is happening, but if I can ignore it, I won’t give increibly long lectures to anyone else about how it’s patronising to have a fixe budget for my care, but to have someone who is not me deciding that I absolutely need a personal assistant more than, for example, new brake pads, or a bigger light therapy light.

From that, we got to actually deciding what I needed. Broadly speaking, the plan was to have someone arrive at about 9.30 or 10 to wake me up, rearrange the bed into a “sitting up to work” posture, make me a cup of tea and a flask of soup or curry to put by the bed for dinner, then leave again. They’d then come back in the afternoon if needed, to empty the urinal, possibly sort me another snack, and give me a hand doing the normal household chores that I can’t do, like washing dishes or sorting laundry, or possibly on good days to do things like go to the market or set up the workbench for sewing or similar.

They then decided that I would probably need combined funding from the NHS to provide medical care, because the basic stuff that my friends do on a day-to-day basis is apparently so difficult and unusual and viscerally upsetting to the average person that they’ll need a nurse to do it. Even though I know that a nurse’s response would be “Go to A+E”. So I’m getting a nurse that also doesn’t mind washing hair and cooking and cleaning, rather than a gentleman’s gentleman who can also reduce dislocations. Probably.

I don’t want this. I viscerally do not want this level of interference in my being, even as much as I know that on a bad day, it’ll help. I worry that they’ll either decide that what I want is taking the piss, and thus withdraw support, or that they’ll decide that they want to push and insinuate themselves into being there every day, even on days where what I want to do is be out and away. I do not enjoy the company of other people, and I worry that there’ll be an implied contract to be friendly and make small talk, which I am not good at. In total, they were here for over three hours, and it was exhausting and upsetting.

And then yesterday evening I ended up gong out to a new person’s house and, for assorted reasons, having a horrible panic attack that resulted in me riding up to Best Friend’s house at midnight and collapsing onto the settee in his living room and wibbling and making depressed, terrified noises until I was calm enough to get back onto the bike and ride back home. I was still paranoid enough that the taxi that decided to follow me three quarters of the way home, two inches off my back tyre, really put me further on edge. As much as my acceleration was better, I wasn’t willing to break the speed limit, but he was – So he’d shoot up to fifty to catch up, then slow down to thirty again when he was completely filling the mirrors. Considering that I took an insanely convoluted and little-used route, he was definitely doing this for “fun”.

On the other hand, driving across the city in the pitch black, with half the streetlamps out, and barely any traffic, as the ground frosted over and the sky cleared to reveal millions of stars, with the view out over the valley as I got nearer to home… That was nice. That was worth it for the whole rest of the shitty day.

Today I’m in pain. I’ve got a short deadline that I’m not going to make, my tutor hasn’t responded to my email asking for an extension, my legs and shoulders and neck hurt in a way that suggests they’ve been too tense for too long, and I’m just not feeling great at all.