Multibollock.

After a bit of soul-searching about whether or not I really wanted to go, and right-up-to-getting-in-the-car wobblies about coming home early, I actually went on holiday.

 

It’s increasingly a yearly tradition – Me and Best Friend and his parents get a holiday cottage somewhere (First one was at Ullswater in a converted barn, second was at Whitby in a big shed on a caravan park, this one was a ground-floor flat in what had been a gentleman’s residence overlooking Esthwaite) and have a nice, chilled-out week doing touristy stuff.

 

This time, even more so than the previous times, it was fucked up by me being incredibly mentally ill.

 

Day one, I stayed in my room and refused to talk to anyone, having a full-on “I want to take my body off and never put it back on again” level of badness.

Day two was good – Finding somewhere to sit around the banks of Coniston, with lots of damselflies and Herdwick sheep and generally just nice weather and scenery.

Day three was a boat trip on Ullswater, on the same steamer as the first time, which was wonderfully relaxing – Just sitting on the quarterdeck, admittedly spending part of the time lying flat on my back and staring up at the sky because sitting upright was too much for my spine. Then trying to go up the path to the youth hostel on Helvellyn, which I failed and basically collapsed during, needing such a vast amount of morphine that I was entirely a turnip on the way home.

Day four was recovering from that, pootling about the grounds of the house where there was so much wildlife; Tree-creepers, greater spotted woodpeckers (A whole family of them!) a young buzzard, an osprey catching a fish from the lake and then slowly circling up, giving us a good view of it as it flew off, a muntjac looking very furtive, a young slow-worm basking on the wall, a vole that wasn’t even slightly scared of humans, and plenty of swifts and swallows and other birds that would have been a headline-spot back home. Still, largely, just sitting in the corner and wibbling a bit, and planning to go home early.

Day five was rowing boats on Esthwaite, variously taking turns to try to row and/or paddle, which I did surprisingly well at and didn’t end up in the water at all. Desperately wanting to go home, but electing to stay because however stressed I felt, I’d probably feel worse if I wasn’t allowed to show how worried I was about politics. And then, at 21.50, we instituted a media blackout, so as not to get completely caught up in the referendum (us all having postal-voted weeks ago). Instead, we watched Rome and enthused about the Marian reforms and ancient mass-production of things like segmented lorica and single-use amphorae. We got to sleep at about 02.00.

At 04.30 on day six I woke up to go to the toilet and checked my phone to see how the results were coming in. I then lay back down, making an uncontrollable noise of distress, which woke up Best Friend. I tried to pass it off as just a shoulder spasm, letting him sleep a bit longer, but within about fifteen minutes he was waking up, and asked point-blank if I knew the result yet, since I was reading. I told him, and then we were both awake and miserable and angry. At about 5.30, we heard the others moving around the kitchen, getting coffee, so apparently nobody had any sleep that night.

 

Not to be deterred, but wanting to avoid all people, we went to the miniature railway at Ravenglass and Eskdale and avoided getting on it, instead taking plenty of photos in the station and the rail yard, then slowly made our way down to the ruins of the Roman bath at Muncaster. Despite the first half of the day having tiny locomotives – Combining two of my favourite things, trains and things which are the wrong size – I actually think that the bath was my favourite part of the day. They’ve got the distinction of being the tallest standing Roman ruins in England, and they were both amazingly complete and amazingly empty and untouched; Other than a tiny signpost saying roughly what they were, they were just some stone walls standing in a field. Stone walls, with square relieving arches, and surviving Roman plaster, and alcoves for the god of the bath, and the remains of the hypercaust visible near the caldarium, and a long green depression in the grass where the frigidarium would once have been, and just generally a wonderful sense of peace and being far away from the horrors of modernity. And we got to the Cumbrian coast, with its odd green clay pebbles and huge plates of broken bivalve shells, and happy Friesian cattle and alpacas grazing right up to the tide line.

 

On the way back to the flat, there were buzzards everywhere, and pretty bikes on the road, and generally the world seemed fine as long as we just avoided all human contact. But, well, all human contact needed avoiding.

 

The Sunday after getting back home, I went for a long ride out on the bike, basically circumnavigating the county before ending up in the biker cafe on the border. It was, frankly, a beautiful day. Blue skies, grass and fields just starting to turn from green to gold in places, and a cafe and field and car park full of happy bikers and their families, eating ice creams, enjoying the sunshine, snoozing on the grass, admiring each other’s machines. I parked up between a glorious triked Rocket 3 and a red Aprillia that looked like a wasp, bought a baked potato and a bottle of Lucozade, then sat on the hill overlooking the entire field, generally enjoying simultaneously being surrounded by people and being left basically alone.

 

Then the Monday was Attempt Two on the Mod 1 – Did not pass; Honestly think I was set up to fail, having not had a chance to ride the bike at all beforehand, but at least I had a nice paper of chips and nearly witnessed my riding instructor buying a lifesize fibreglass gorilla for the garden. Have booked back in for the 19th of July, at 08.00, which feels a bit early in the day to be doing anything at all. But needs must when the devil drives.

 

Tomorrow is an appointment at rheumatology- Firstly, I have no idea what for, but presumably this is my usual standing appointment, and secondly, I really don’t want to go since I don’t want to think about being ill right now any more than I really have to.

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Other People

This was an article on Pulse Today today, and it annoyed me so much that I thought I’d rewrite it, showing instead a model of how the same theoretical appointemnt would go as an “ideal interaction” as a patient.

 

I’ve reproduced the full text of the original at the bottom, in case it gets mysteriously deleted.

 

My version goes here, keeping the same title for continuity’s sake;

Treating a Chronic Sense Of Self-Entitlement

She’s new to the surgery, so I’ve booked her a long appointment, knowing that a change of practice means that I’ll get a whole flood of complaints and ongoing issues that need chasing up from her last doctor. I know that I should have read at least the brief precis of her notes before she got here, but they’ve not been uploaded yet, so I’m going to have to wing it.

She launches straight in as soon as she arrives, knowing that a fifteen-minute appointment isn’t much time in which to cover everything;

‘I need a prescription for all my usual meds plus some extra sleepers. And supplies of milk for the baby. My sickie’s overdue and I need a letter from you to help my appeal. How can I work with these knees? I need them X-rayed. And you need to do something about my weight. And while you’re doing the prescription, you can put on some nicotine patches,’ she pauses for breath, ‘And you can do me a rehousing letter. I need a ground-floor flat coz for some reason they’ve put me on the second floor and the lift never works.’

I lean back a bit in my chair, slightly taken aback by the machine-gun fire patter (She’s evidently been running the list over in her head for a while) and start sorting things out in my head.

“Hang on a minute” I say “That’s a lot to take in at once – If we can’t cover everything in this session, can you book a second one for…” I click through my calendar, finding a few slots in the next fortnight “…Either Monday at 9am, or Thursday at 3.45?”

She nods at one of these, which I quickly grey-book.

“Right, sorry. Admin. Which is the most important to you then, that needs to be done today?”

She takes a deep breath.

“Sick note first, my manager has been harping on for a week to get it up to date, and if I don’t get it today, I’m out of work.”

I nod, and queue up the form to type a sick note.

“What exactly is the problem then?” I ask “Is that your knees?”

Assent, again. I ask how long they’ve been bothering her, and to describe the problem a bit. She does so, saying that they affect her ability to work, and I surmise that this is why she wants a flat on the ground floor. I book her in for the community physio, warning her that the first thing they’ll do is to tell her to lose weight and eat better, which will help her weight as well as taking the stress off her knees, and book her in for the aforementioned imaging as well – An x-ray at the walk-in within the week, and a waiting list for an MRI.

I give her an exercise prescription card and, remembering that she said she had a baby, tell her which of the council leisure centres nearby has a creche.

And then I print out the sicknote, saying in half a dozen words that her knees are in pain and are being investigated by her GP.

 

I do a mental checklist. That covers “ My sickie’s overdue“, “I need them X-rayed” and “do something about my weight“. What’s left…

 

“You asked about a repeat prescription – Have you got an old slip on you?”

She has, so we look through it together, and she tells me how each of the medications help her, and what their side effects are. Together, we work out two medications that could be streamlined into one, one which she stopped taking months ago but forgot to stop refilling, and one where she’s happy to try a different medication in the same family since it has a slightly gentler set of side effects.

“You mentioned needing extra sleepers” I say, reading the exact medication off the list “Do you ned more of the same, or a different one?”

She shrugs, and I realise that I should have known that she wouldn’t know, because she’s not a doctor and might not even know how they work. I ask a few questions – Have they stopped working? Do you need more to get the same effect? Have your sleep problems got worse? Did they just not work very well in the first place? And quickly work out what she actually needs, and amend her prescription accordingly, making sure that she can pick up the whole new prescription on the way home (Nobody likes having their medications out-of-synch).

I look up at the clock – Ten minutes left, we’re actually doing well for time, and this is what long appointments are for.

“Nicotine patches, you say? Are you quitting smoking?” She nods proudly, and I smile, more than happy to help.

I dive back into the questions – Have you tried to quit before? How much do you smoke per day? And offer her the “smoking cessation” booklet that I know has all the information in that I don’t have time to share, along with advice to ask her pharmacist for more advice if she needs it, a prescription for her first course of patches, an invitation to come back in a month to see how she’s doing, and a hearty wish of good luck and goodwill.

I ask her again what’s left on her list, since I can’t remember all of it, and she’s more likely to remember what’s troubling her than I am.

“Milk, for the baby” she says, and I wonder why she needs prescription milk – Again, the notes aren’t through yet, so I ask her what the prescription milk is, and determine if it’s something that we can actually supply or not, and check that she’s got an appointment with the New Mothers’ clinic, which does basic health checks for both the baby and the parent, and ask if she wants some literature for the new parents’ group that the clinic runs.

I rack my brains, to see what’s left.

“You said you needed a letter for rehousing?”

She replies;

“Yeah, I’m on the second floor, the lift’s always broken, and it’s playing havoc with my knees.”

I think quickly; If this is only a temporary problem, she won’t need to be rehoused, but it’s definitely worth getting on to the council to get them to fix the lift. I bring up her address, look up the number for buildings maintenance on the council website, and tell her to phone them, writing it down clearly on a piece of paper along with the words “Reasonable accommodation”. If this is a permanent problem… Hmm. I’m already going to see her again in a month, but I tell her to book a long appointment for then as well, to cover both her knees – which since she’s off work and unable to climb stairs are evidently really affecting her quality of life – and her smoking.

 

I look back up at the clock. Three minutes to go.

“Does that cover everything?” I ask. She counts on her fingers;

“Bad knees, weight loss, milk, housing, sickie, smoking, repeat prescriptions.”

I reply;

“On the physio waiting list, booked in for imaging within the next month, got the gym card, booked in for the mother and baby class, you’re going to phone your landlord about the lift and I’ve given you the number, you’ve got your sicknote there in your hand, we’ve gone through your prescription and changed a few things – including giving you nicotine patches – and you’re coming back in a month to tell me how the physio and the quitting are going, and to see what your x-ray has brought up.

“Sorry, I know it’s a lot to remember, but everything that you need to remember is in one of those papers in your hand, and you’ll get a letter from the Trust to tell you when your appointment is once it’s booked. Is that all all right?”

She smiles, looking honestly relieved;

 

“Yes, thank you. Right, see you in a month.”

 

I wish her good-bye, and off she goes. As she gets to the door she says;

 

‘Any chance of a prescription for Calpol?’

It clicks – Prescription for milk, prescription for Calpol; She’s struggling financially, both of these being things that you can buy comparatively cheaply, but that (If you get free prescriptions due to being on an out-of-work or low-earnings benefit, which she may well be since she’s ben sick for long enough to need more than one sick note) a doctor could prescribe. And being on half-pay for sickness, or possibly even needing to take the sicknotes to the jobcentre, will wreck anyone’s sense of financial stability. Thankfully, the council have some advice leaflets and a service to phone to get a foodbank referral and help from the local credit union, and the Citizens Advice Bureau can do the rest. Along with the prescription for Calpol, I give her that information.

 

 

***

Am I naive in thinking that’s both a much nicer interaction, and not completely above-and-beyond the call of duty? The GP sees someone who’s “learned helplessness” and “sufferring from a chronic sense of self-entitlement”, based solely on the idea that they’re working class, have poor social graces, are fat, and are concerned about their weight and joint pain, and seem to be at a loose end financially. I see someone who’s trying to quit smoking, trying to manage their weight, trying to get to the bottom of a health problem that’s bothering them and has stopped them from both working and sleeping, and is running up against an obstreperous GP who won’t even point them in the right direction. This is a GP who sees someone who is in pain and distressed and decides it’d be “fun” to call them names.

I’m baffled by the idea that going to your GP with a long term health-problem is “Being entitled to anything and everything”.

 

 

Treating a Chronic Sense of Self-Entitlement

“She’s sunburnt, elephantine and heavily tattooed. Which may or may not be relevant, but is a fact. She’s also new to the surgery.

Waiving all the conventional niceties, she launches straight in: ‘I need a prescription for all my usual meds plus some extra sleepers. And supplies of milk for the baby. My sickie’s overdue and I need a letter from you to help my appeal. How can I work with these knees? I need them X-rayed. And you need to do something about my weight. And while you’re doing the prescription, you can put on some nicotine patches,’ she pauses for breath, ‘And you can do me a rehousing letter. I need a ground-floor flat coz for some reason they’ve put me on the second floor and the lift never works.’I take a step back mentally if not physically, though the latter’s tempting. This, I reckon, could be fun.

‘I think I can see the overall problem here,’ I say, ‘You’re suffering from a chronic sense of entitlement.’ She narrows here eyes, but I plough on, ‘You’re confusing wants with needs, and because no-one has ever explained the difference, you’ve developed a learned helplessness and dependency which you’re locked into. I suspect no one has ever had the time or inclination to liberate you, but that’s what I’m going to do. Your freedom lies in one word, and that word is, “No”. So that’s what I’m saying. No. To everything.’

I sit back and wait for the fallout. The fact that I’ve folded my arms really isn’t a sign of smug self-satisfaction. It’s actually self-protection. So’s the tin hat.

She leans forward, looks me in the eyes, and begins: ‘I think I can see what you mean, doctor. You’re saying that over the years, I have developed the attitude, perhaps reinforced by health professionals, that I’m entitled to anything and everything. In turn,’ she continues, ‘This has undermined any vestigial ability or inclination I might have had to sort out my own problems, with the result that I’ve developed this unrealistic level of expectation and intractable passivity. The fact that everyone has bowed to my demands has simply, in the long term, led to my own disempowerment. I’ve become a victim of those who have tried to help me, because they have effectively rendered me helpless. So I understand why you’re saying “no”. Indeed, I appreciate the irony that your refusal is, after all, simply a reflection of your own entitlement, as a responsible professional, to tell what you see as the truth. I respect the stand you’re taking and will try to move on from here. I bid you good day.’

With that, she got up to leave.

 
 

Hand on doorknob, she turns and asks, ‘Any chance of a prescription for Calpol?’

‘Sure,’ I say.”

Dr Tony Copperfield is a GP in Essex. You can follow him on Twitter @DocCopperfield

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.

 

Funded By The British Taxpayer

So, as of 2016, all medication prescribed by the NHS and costing more than £20 is going to have the price listed on the packet, along with the message “Paid for by the British Taxpayer”.

The Tories claim this is to “hammer home to patients that these drugs aren’t ‘free’, and that wasting them costs the Taxpayer money”.

Right then.

It takes a good eye to not view this as “Tories trying to guilt-trip the disabled into taking less medication”.

First, let us look at “Funded by the British Taxpayer”. This does two things – It posits that anyone taking a prescription is not a taxpayer and subtly, somehow, not British. After all, it’s not British to just take something for free, we’re a nation of hardworking families. Definitely not inclusive of disabled people, who are both more likely to not work and more likely to be single or childless than an abled person.

I find myself fighting the urge to remind readers, and more so myself, that I am a taxpayer, I am self-employed even if I’m currently on self-appointed sick leave, I live with my partner in a close approximation of a family. No matter how much I tell myself that my worth is not my monetary value, or my conformation to strict standards of how a successful person looks (House, car, job), but is based in my strength of character and the love of my friends… I’m still subject to the same propoganda as everyone else. I am a taxpayer, a worker, and thus I have rights. Being a taxpayer gives me rights. I chuck my comrades who can’t and have never worked to the wolves.

Asides aside.

They write “THIS PROLE IS COSTING THE TAXPAYER MONEY” on the bags that we must carry home from the pharmacy. Passers-by scrutinise us; Do they need whatever’s in that bag? They’re just going to go home and waste it. Or maybe they’re an addict, and that’s their fix, getting high on prescription drugs. Are they really ill? I saw them on crutches last week, a wheelchair the month before, but they stood up and walke around a bit. They’re faking, I know it. Sick bastards, draining Us Hard Workers’ taxes, giving nothing back. Bet they’re on benefits. Bet I can dob them in to the DWP for not being as sick as they claim. I can diagnose complex illnesses by watching someone walk twenty yards.

Those people, they’re just a drain on society, they give nothing back. We shouldn’t be so lenient towards them. Let them live in hospitals or asylums or prisons, it’ll be cheaper. Feed them, clothe them, but none of this luxury money to buy chocolate biscuits or internet access. That’ll teach them to skive off work. To have the temerity to be ill.

…It’s not far from that to denying us care altogether. Spend the money on people who will get better. Is it worth £20 or £40 or £80 to keep a cripple happy for a month, when it could be used to make a Hardworking Family better off?

I am compelled at this point to remind gentle readers that my taxes pay for their children to go to school. I have no children, I never will, but I don’t want signs on school gates saying “THIS COSTS THE TAXPAYER MONEY”. I’m not going to bang on at length about truancy rates and exam failures in the paper. I’m not going to try to whip up the population to worry about whether everyone who’s getting an education is really using it wisely and whether maybe some of those people should stop wasting educations and maybe get to sweeping chimneys instead.

So, one small sentence and we’re outside of society.

Then it gets worse;

Worthlessness is a fairly common feeling amongst the chronically ill, especially those of us with either mental illnesses, invisible illnesses in general, or what ued to be thought of as “Malingerer’s diseases” – Things which cause the kind of symptoms which aren’t visible to observers but rely entirely on self-reporting (Get me started about honest self-reporting of symptoms one day, if you ever want to be bored to tears). Fatigue, pain, confusion, muscle weakness, agoraphobia, psychosis. The day where you have one of those symptoms, and don’t at least briefly wonder “Am I just being lazy and melodramatic?” is a rare one.

Imagine that there was no way to buy food on the open market (as is the case with many prescription drugs, which are either controlled or downright illegal to posess otherwise). There is an agency which gives you food, which you need to live. There is no way to pay this agency (At the point of use, that is. You pay for the Food Distribution Service through your taxes, along with things like roads and schools and the fire service) and there is no way to stop being hungry. Every time they give you food, they begin to remind you how much the food costs, that someone had to make that food, that the money used to buy you food could have been used to look after innocent babies or to improve the lives of people who are just on every level more worthy than you. How long do you think that you could manage before you started trying to live on nothing but tea and dry bread? Or only eating once a week, and spending the other six days lying very still so as not to take money away from innocent babies?

But of course, this is all a lie. The money saved by having more people fail to collect their prescriptions, to decide to go unmedicated – To actively decide to live in pain in order to be less of a burden to society, Mr Hunt, this is what you are asking of us – Will not go to look after innocent babies, or even to fund the NHS better. Mr Hunt and his cronies will look at how much money the NHS is “saving”, and will slash its budget. Then Mr Smith will look at how the number of people on repeat prescriptions has reduced, and will tell the department of work and pensions that the sick are being cured, and that thus less of the sick should claim benefits – After all, if the sick can cope without medication, they can’t be that sick, can they? They must have been swinging the lead when they said they were sick, what a bunch of scroungers, trying to cheat the Hardworking Families out of their hard-earned money.

Grist for the mill.

Reasons I personally hate the Green Party

People keep mooting that the Greens are amazing and progressive and great for the disabled. They’re not and here’s why, straight from their own manifesto.

1) Their placing of animal welfare as being more important than human welfare

AR412 To prohibit the import, export and sale of all fur, whether wild caught or factory farmed, and to ensure a ban on fur farming in the UK stays in place. The import of other animal products such as ivory, reptile skins and whale oil, will be prohibited.

-So, if a farmer shoots a deer or a rabbit as a pest-control measure, he can sell the carcasses to the butcher, but the butcher isn’t allowed to sell me the hides to tan, and I’m explicitly not allowed to tan the hides and sew them into fur clothing for market.

AR413 In the UK, millions of animals are used each year in experiments which can cause great pain and suffering. There are significant differences between the physiology of animals and that of humans and the reliance on animal testing and experimentation increases the risks of adverse reactions and hampers progress. A large proportion of animals are used for non-medical testing and for duplicate research which could be avoided. There are now many techniques available for testing of chemicals, drugs and medical procedures and for researching disease that do not use animals. However, these alternatives are often not used and are not adequately funded or supported.

– Duplicate research is necessary to make sure that there weren’t any issues with the first study. Any drug coming to market has to have gone through a certain number of animal trials before being tested on humans, for reasons which should be obvious. You can’t just stop all animal testing, all that that will do is send a crucial step in drug development abroad, where it won’t necessarily have the same oversight as here. It’s NIMBYism at its finest.

AR414 The Green Party would ban all experimentation and research which harms animals, including harmful procedures used to obtain animal-derived materials. ‘Harmful’ is defined in this context as ‘having the potential to cause pain, suffering, distress, lasting harm or death in animals, except where it is designed to benefit the individual animals concerned.

– Again, all that this will do is send the development of new drugs abroad, killing off one of our bigger and more profitable industries (We’re pretty close to the top of the field in biomedical research). This will also increase the cost of animal-derived drugs in the UK, meaning that they’ll be prescribed less. So people who need them will suffer.

AR415 Government research funds will be transferred from animal tests to non-animal technologies, including epidemiology, computer models, micro-dosing, imaging, DNA chips, microfluidics chips and the use of human tissue. Much greater use will be made of epidemiological evidence and clinical data. Greens would also fund more research into prevention of disease, looking at diet, environment, family history and lifestyle.

– No. “Diet, environment, family history and lifestyle” will not fix most health conditions. Actually, the only way that “family history” could fix a lot of health conditions would be via eugenics. “Lifestyle” sounds like another “Let’s blame the sickie for being sick, they’re just lazy really”. Non-animal models are amazing, but we still need to test on animals in order to make sure that humans aren’t harmed by new therapies.

AR416 The Green Party is opposed to the harmful use in education of animals and of animal-derived materials where the animals have been killed specifically for this purpose. The Party supports the replacement of the use of animals and animal material with methods such as models, mannequins, mechanical and computer-based simulators, films and interactive videos, plant experiments and observational and field studies, and human studies including self-experimentation. The Party supports the educational use of animal cadavers and animal-derived materials where these have been ethically sourced, such as animals who have died naturally and animals who have been euthanased for humane reasons.

– They would rather that veterinary students literally experimented on each other, rather than that they killed some rats. Sometimes you can’t just use the cadavers you happen across – You need consistent models of tumours, consistent models of the same kind of injury, consistent pathologies across all of your specimens sometimes. Although most of the time you can, you can’t always just pick up a bag of pig uteruses from the slaughterhouse and call it a day. And again, computer models and mechanical models can’t do everything. Do you want the vet that’s trying to diagnose your cat’s illness to have only ever seen a pathology like it on a forty-year-old photograph in a textbook?

AR428 Xenotransplantation: The Green Party would abolish research into, and the practise of xenotransplantation (the transplantation of nonhuman animal organs, genetically engineered or otherwise, into human beings). Treating nonhuman animals as “spare part” factories is both immoral and inhumane, and is therefore completely unacceptable in an ecological society. Xenotransplantation is yet another instance of corporate profit being prioritised over public health and the rights of nonhuman animals. Xenotransplantation carries the grave danger of virus transferral from nonhuman animals to humans, raising the real possibility of the unleashing of an epidemic amongst the human population.

– They would just ban xenotransplantation. Full stop. Pig heart valves saving lives? Nah, let the humans die. Of course, we can still eat pigs, just can’t use their body parts to keep people alive. And this will also strain the transplant register even further, since people who could have done with just a pig valve wil now need a whole human heart. Which are, understandably, hard to get hold of.

2) They use the term “not-yet-disabled” to refer to ablebodied people.

Basically, it’s a smartalecky way of saying “Oh, we’ll all be disabled one day because we’ll get old and need carers!” And this does two things. First, it erroneously equates the problems faced by young disabled people to the ones faced by the elderly. There’s a huge difference between a loss of mobility and independence after a full life in which you’ve been able to build up a pension, and more to the point where there are services available to cater to and a societal acceptance of your needs, and in being a teenager in chronic pain and unable to finish your education, or a young parent that can’t walk, or looking for work with a severe learning difficulty, or any number of other things. Secondly, it’s unnecessarily upsetting to people with progressive conditions, especially genetic ones, where you know for a fact that you’re “Not yet disabled”, because you’ve tested positive for Huntingdon’s Chorea, and you’ve only got a few slim years left of that status at the age of thirty. An ablebodied person swimming in their own self-righteousness and calling themself “Not yet disabled!” isn’t confronting their own mortality and showing soidarity with disabled people, they’re being a solipsistic shit.

3) Their policies on drugs

DU102 In recent years, the `drugs problem’ has been largely equated with the use of illegal drugs. This has had the effect of diverting attention away from the dire social and health consequences of legal drugs, principally alcohol, tobacco and inappropriately prescribed tranquillisers. Between them, these cause the loss of thousands of lives every year and much pain and disability for both users and non-users of these drugs.

– That sounds, reading between the lines, like they’re going to try to make it harder for doctors to prescribe tranquilisers. The second that a non-medical-body starts talking about “inappropriate prescription”, you can pretty much guarantee that they have an agenda which boils down to “Let’s prescribe less of Those Nasty Drugs That Could Be Used For Fun”, regardless of how clinically sensible it is. Tranquilisers, scary as they sound, include benzodiazepines, the things which stop me from curling up like a snail in a blast furnace every time I dislocate something. I don’t want anyone who isn’t my doctor legislating on what’s an appropriate prescription there.

DU103 The legal drugs, principally tobacco, alcohol and pharmaceutical drugs, are widely promoted through advertising, sponsorship and corporate pressure. As a result their use is generally accepted by society and efforts to control usage largely rely on a mixture of taxation, education, restriction of sale and use to adults or certain places, and voluntary restraint.

– Sounds a lot like “Let’s stigmatise drug use! All drug use! Even pharmaceuticals! Bad boy, taking your life-saving medications! Why not try a hot milky drink?”

4) Their policies on health

HE103 Health services can create dependence on the part of users, which is itself unhealthy. Individuals can through properly informed choice, and when adequately supported, acquire much greater responsibility for their own health, and the health of their families. However, true freedom of choice cannot be exercised without the economic and political power to choose, at present denied to the majority.

– Yep, if us disableds didn’t feel so socially validated in our sick choice to keep using health services, we’d all be out climbing Everest by now.

HE316 Hospitals will focus on services for patients needing inpatient care. Accident and Emergency Departments will be for emergencies only with care for minor illnesses and injuries provided for by community health centres. We will require adequate night and weekend cover from consultants and diagnostic facilities in all hospitals dealing with emergency admissions.

-Again, ignoring that there’s a big ground in-between “Life threatening” and “Can be dealt with by the walk-in centre”. Basically ignoring the reality of disabled people in general and zebras’ in particular medical care: Regardless of the problem, we need specialists and hospital facilities, because what we’ve got interacts with everything else.

HE322 The Green Party believes a good diet is so important in the promotion of good health that all schools will be obliged to have their own kitchen so as to be able to provide for each child a freshly prepared lunch each day, using fresh, organic and local produce wherever possible. Food provided by schools must include both vegetarian and vegan options.  We would continue the school Fruit and Vegetable Scheme, with a strong preference for organic and local produce. Such meals will be free to all children and will be paid for out of increased taxation: we believe that the consequent improvement in health will dramatically reduce the costs of illness and social care to the NHS and other public services. Junk foods and vending machines will become unavailable in state schools.”

– It’s all very sweet, but if you remove vending machines from schools that means that pupils can only eat when they’re alowed to. A lot of disabled bairns (and most bairns, actually) don’t do well on the “Three big meals a day” model, and need a pick-me-up mid afternoon. A bar of chocolate or a cup of sugary coffee will provide that a lot more satisfyingly and conveniently than a bag of grapes, and with a lot less waste (Chocolate and crisps keep. Apples quickly go stale and need throwing out.) I’m not saying don’t provide fruit, I’m saying don’t ban chocolate.

H330 Novel compounds will not be introduced into general use unless they can be shown to have significant advantages over existing drugs. Limited list prescribing will be extended across the full range of pharmaceuticals. The direct advertising of prescription- only medicines to the medical profession will cease. Information to the medical profession will be the responsibility of medical schools and independent authorities with no vested interest in companies which manufacture or market pharmaceuticals.

-Again, I don’t want non-clinicians telling me which drugs are more advantageous than others. I want many drugs which do similar things, so that when someone has an allergy to one, they can just try the other one.

HE332 Whilst assessment of treatments must be evidence based, an holistic approach will generally be taken.  This will take into account the range of factors in health and disease, wider benefits and health outcomes than addressing a single illness and a full assessment of side effects and risks to the patient and to society. Treatments that target the causes of ill-health will be favoured over treatments that simply target symptoms.

– No palliative care for you! Not until you’ve jumped through these hoops!

Now, you may note that there’s one particular type of human that most of these policies harm the most. It’s the disabled. Again. But hey, under their generous rule we’ll be looked at with even more suspicion when we take our medications, and doctors will be even more loath to prescribe pain relief and sedation. We’ll have no new treatments developed and we’ll be allowed to die instead of having proven surgery. Because we’re not as cute as piglets.

Fuckitt, that’s A-H on their policies, I might get around to doing the rest of H and onwards next week. That was knackering.

Headclutcher

This is a really worthwhile campaign – http://www.time-to-change.org.uk/getthepicture (Found via the lovely @SLCathy)

One of the great cliches of mental health reporting is the headclutcher photo; You know the one – Person sitting, often on a flight of stairs or backed against a wall, with face obscured by hair and head held in one or both hands.

Funnily enough, a lot like the pose I’ve been adopting in trying to deal with this over-prolonged photophobic migraine.

But yes. Headclutching is, although not unheard of, not common. I’ve known individuals who’ve last-second resisted self-harm by sitting on their hands, gripping their arms, twisting their hands in their hair or just plain grabbing their heads, and of course tricotillomania is a thing, but why those two comparatively rare situations are the headline way that we represent mental illness is a bit beyond me.

The cynic in me says “It’s because it’s a way to show mental illness in a way that doesn’t show someone’s face.” Is mental illness still so stigmatised that we won’t show a face next to it? And considering that we use stock photos including faces for stories about all kinds of incredibly embarrassing or personal things, even things with quite a stigma to them (The classic “Woman sitting on edge of bed looking sadly at camera whilst man sleeps behind her” photo for all sexual advice columns). So what makes mental illness so bad that it feels like a risk to put a face, even a face with “Picture posed by actors” written below it, next to it?

The realist in me says “It’s because nobody really understands that mental illness happens to both more and less people than you think, and that those people are just people”. I’ve talked about mental illness before as being a bit like asthma. Some people will have one attack, ever, and never really have to think about it again. Some people will know that they’re prone to asthma attacks, so will know when they need to go to the doctor to get another inhaler. Some people will have asthma for their whole lives, and carry an inhaler everywhere, but will have it so well-managed that other than the prescription, you’d not really know. Some people will be hooked up to a nebuliser and barely able to get a sentence out straight for weeks on end. Some people’s whole lives will be defined by their asthma, and some won’t even think about it much.

This is why the “One in four!” statistic bothers me so much, as well – Every time someone cheerfully says “Oh well, one in four of us will get a mental illness at some point!” in response to someone disclosing their illness, they’re doing both a very good and a very bad thing. Firstly, they’re reminding themself that mental illness is common and that the mentally ill aren’t a terrifying other (which is good) but secondly, they’re often using it as a card to allow themselves to not have to listen to the ill person.

Possibly a good way to think of it is that one in four people have mental illness at some point in their life, but it’s far less than one in four that end up disabled by them. It’s also useful to increase awareness that not all mental illnesses are the same, just like not all physical illnesses are the same.

So, what’s this got to do with headclutchers?

Well, one of the things that’s the problem with the headclutcher is that it portrays mental illness as always being acute, and it portrays acute mental illness as always being headclutchy. If you expect the mentally ill person to look depressed and have their head in their hands, you won’t notice the bipolarbear on a spending spree, or the schizophrenic who’s suddenly convinced that her girlfriend is cheating on her, or even just the depressive who’s given up on his sport and doesn’t go to the pub anymore.

It also means that someone who is experiencing mental ill health, and tells someone about it, is less likely to be believed if they don’t look headclutchy in some way (If not literally clutching their head, then at least physically not in complete control of their body, possibly badly-groomed and unable to make eye contact). Some people do, some don’t – Some feel like they do, but have such a command of social norm that it doesn’t take them much effort at all to put on their best suit and look well, so they look normal anyway.

So, what’s the alternative? We still need photos to go with stories about mental illness.

Here’s a few that I can think of, as a non-expert, so they might not be good, but at least they’re not nothing;

For stories about hospitals, services, or inpatient treatment – Pictures of the facilities? Signs pointing to the psych ward, lovely redbrick hospital frontages, waiting rooms nicely decorated with big fish tanks, or empty wards illustrating numbers of beds. No faces required, since it’s about service provision. Possibly even pictures of telephones, for phone services.

For stories about diagnosis – GPs’ waiting rooms, the outside of the surgery, a stereotypical GP’s office. They’re much more relevant to the actual act of being diagnosed than

For stories about medication – Pictures of pill packets, or dosette boxes. Still no faces, and no judgment with them. Also an opportunity for pictures of your friendly local pharmacist or similar.

For stories about suicide rates – First of all, for fuck’s sake, stop showing methods. Secondly, stop showing headclutchers because it’s still inaccurate, and someone that’s looking for headclutching isn’t going to be looking for actual warning signs. And why not just illustrate with landscape photos of wherever you’re talking about? It gets across some of the sense of the story, the physical location, it isn’t graphically horrible, and frankly a nice landscape might cheer up anyone who’s just spend ten minutes reading about preventable death.

For stories that really are about mentally ill people – Why not just use pictures of people? If the story is about a footballer who became mentally ill, show someone playing. If it’s about a new talking therapy, show two people talking. If it’s about getting ill when on holiday, show someone on a beach or something. Effectively, the story is about someone’s mental illness, so you don’t need to reiterate that they’re ill by showing them, inaccurately, headclutching. Yes, a picture of someone kicking a football doesn’t tell you anything new about mental health, but at least it doesn’t spread a lie like a headclutch does.

Anyway, yes. Support #GetThePicture on Twitter. Time To Change are doing really good work.