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.

A dance with the devil

I don’t know a single zebra who hasn’t at some point been told something like “I hate it when you take your painkillers”, by someone that they love and value. Best friend, partner, family member; The kind of person whose opinion matters, and where you might want to do anything to make them think better of you.

“I hate it when you take your painkillers”

Let me count the ways that that sentence is fucked up.

“I hate it when you take your painkillers” translates pretty neatly to “I prefer it when you’re in pain”. Regardless of if they’re trying to say “I prefer it when you’re in pain to when you’re socially inappropriate” or “I prefer it when you’re in pain to when you’re sleepy” or “I prefer it when you’re in pain to when you need someone else to drive and cook for you.” it, at its heart, is “I prefer it when you’re in pain.”

The most insidious justification of it that I’ve heard has always involved children, or pets (Disclaimer; I don’t have children, but I do have a dog) and it’s generally put as “But you can’t look after Isertana/Fido when you’re on painkillers!” It’s then followed up with “You’re irresponsible” or “You’re a bad Mum/Dad/dog owner for taking drugs in front of your child/pet”. And at this point, people tend to look smug – It’s a big social win, after all. Who wants a drug user, no, better than that; Who wants an opiate addict in a position where they’re responsible for the welfare of another living creature?

The picture paints itself; Mum laid on the sofa, surrounded by empty pill packets and half-demolished takeaway cartons, whilst toddler Isertana sits in their underwear, eating stale bread and margarine. Bloke staring at the television, numb, whilst Fido pisses on the carpet for the nineteenth time, thin and flea-ridden. Hogarth would weep with joy.

But let’s look at this in a much more realistic way. Here’s our two people, minus their pain relief;

Mum sits on the sofa, wracked with pain. Little Isertana watches her curling up and screaming over and over again, and wonders why she can’t help her poor Mum. Mum, for her part, is trying everything that she can to stop the pain – Yoga, acupuncture, better food. All of those cost money, and take time. Isertana’s clarinet lessons have to go first – They’re expensive and they clash with Mum’s reiki. Dinner becomes a massive trial, as the whole family switches to macro-probiotic-super-green-organic-gluten-free, and Izzie wonders why she’s being punished with horrible food. In addition to this, Mum snaps and shouts at her over the tiniest things, because she’s in so much pain.

Dog-owner Bloke lies in bed all day, unable to take his dog for a walk. He can’t even get downstairs to put food in the bowl, since every time he tries his knees explode with pain. He gets more short-tempered and stops talking to Dog, other than to tell it to get down off the furniture and to shout at it until it stops crying for food and attention. Dog pisses on the floor anyway, as Bloke can’t get to the door to let it out.

Now, let’s give them back their painkillers;

Mum sits on the sofa whilst Isertana plays, and they chat and play games. Sometimes, Izzie goes and brings her Mum a cup of orange juice, because she likes to help, and her Mum thanks her for it. When Mum is in pain, she takes her medicine, and goes a bit sleepy and easily distracted, but she still likes to sit with Isertana and they watch cartoons together. Sometimes they work together and cook cakes and make big meals, even if mostly they just eat instant, but once a week they order in a Chinese takeaway and it’s a real treat. Both are happier.

Bloke takes his painkillers, and at least makes it downstairs to feed Dog and let him out into the garden. He’s also in a better mood due to not being in pain, so although his dog doesn’t get as many walks as it could, it gets plenty of affection. Since he’s not distracted by the pain, he books a dog walker for a few days a week to make sure that Dog gets exercise. Both are happier.

So, why do people keep saying “I hate it when you take your painkillers”?

My theory is because they can’t imagine the alternative. They assume that (zebra)-(pain relief)=(functional person). Rather than (zebra)-(pain relief)=(person in incredible pain).

They see their partner and think that without the morphine their partner would be more lively, more focused, more of a “responsible adult”. They don’t realise that, usually, without the morphine, their partner would be just as lethargic and scatterbrained, only instead of being just lethargic and scatterbrained, they’d be lethargic and scatterbrained and suffering tremendously.

This is a difficult notion to get into people’s skulls, for a couple of reasons;

1) Society tends to parse “Very stoned” as being a desirable state to be in. Thus, partners will often assume that you just want to be stoned rather than sober.

– This one is difficult. There’s no denying that the feeling of being on morphine can be pleasant; In the right circumstances it’s soothing and restful, it comes with a tremendous sense of peace and affection to those around you, and ‘codeine skin’ (that feeling of having incredibly sensitive, velvety, tingly skin all over) is distractingly lovely.

Note, however, that I say “In the right circumstances”. As an alternative to being in horrific pain it is nearly always desirable. At the end of a long day, when all you have to do is lie around with good company and gently drift off to sleep whilst having inane conversations, it’s pleasant.

In the wrong circumstances (like at work, or on the bus, or at the shops), it’s horrible. That sense of tremendous emotional connectedness translates into painful, terrifying vulnerability. The peace and relaxation becomes exhaustion and grogginess and confusion. The all-over tingling becomes itching and irritation with every buckle, zip and strap.

I’ve said before that it’s like being drunk – Imagine if every morning you were forced to neck half a bottle of vodka, and then sent out into the world. You’d quickly stop feeling as if being drunk was in any way a desireable thing.

2) Society at-large is very suspicious of opiate use, and we have no cultural way of drawing the distinction between “drug dependent” and “drug addict”.

– In the absence of pain, I wouldn’t take opiates. I don’t think I’ve ever taken them other than to either dull pain that I was feeling, or in anticipation of pain that was about to happen. This, of course, means that I take between 20 and 120mg a day, every day.

To the layman, someone who takes 120mg of laudanum a day is an addict. We don’t really have a word for “Person with chronic pain who requires regular pain relief”. It’s similar, almost, to the attitude that some people take to antidepressants – That anyone who is taking them is somehow weak, or an addict, or otherwise morally dubious. It’s still bollocks. Nobody (or not many people) take that kind of attitude to people on long-term statins, or insulin, or antiretrovirals.

Thus, to many people, watching their best friend or their partner turn into the morphine queen feels like watching their partner turn into a drug addict, society’s second most hated bogeyman (after paedophiles). And thus they want their partner to stop taking the evil bad drugs.

3) Many people see looking after yourself, and putting your own needs first, regardless of what they are, as selfish.

– They are generally hypocritical in this. I have found that most people who say “I hate it when you take painkillers” hate it because they want you to be able to do something for them, whether that thing is look after another person, clean the house, go to work, perform sexually, or listen more carefully to whatever they’re saying. My only counter to this is to point out that, in the absence of the painkillers, you’re not going to be better, you’re just going to be in more pain.

And finally

4) People who don’t suffer from long-term pain don’t viscerally know what it’s like.

– When they say “Oh, don’t take your painkillers”, they imagine that it’s like having a headache, or a twisted ankle, or a gravel burn. They imagine that it’s like the kind of pain where, if you just leave it for a minute, it’ll go away. They possibly imagine that it’s like having pulled a muscle or cricked your neck – that it’s bad, but that you can work around it.

It’s not. When you’ve been in pain all the time, you’re already at “I’m working around it” levels of function. The pain that means that you neeed to take more pain relief on top of that is called “breakthrough pain” and it is exactly what it sounds like – It’s a pain that’s so bad that it shatters through any pain relief that you’re already on like a bull ripping through a paper bag. Suddenly, there is all the pain, and you’re feeling it all at once, and it can be anything from “Completely ruins your concentration” to “Curled up, screaming, begging for death”.

I volunteer a solution – Anyone who says “I hate it when you take your painkillers” has to promise to swear off pain relief entirely. And then has to wear shoes full of broken glass for a year. And then they might get the idea.

Short of actually hurting your partner/friend then refusing to give them pain relief, though, how do you get them to understand?

Well, it probably all depends on the person. Someone who dislikes it when you take painkillers because they’re frightened that you’ll become an addict will need a very different tactic to someone who dislikes it when you take painkillers because they find it embarrassing when you’re confused in public.

The common steps I’ve found are basically as follows;

1) Remind them that your painkiller use isn’t about them. It’s your experience, your pain, your choice of which is the lesser of two evils. If they push, find out what it is about your painkiller use bothers them, and gently remind them that without them, you won’t be “better”, you won’t be more attentive or more responsible, you’ll just be in pain.

2) Remind them of the clinical guidelines for the use of whatever painkiller you’re on. If you can demonstrate that what you’re taking is safe, that might help.

3) Point them at the Rat Park experiments. I know I bang on about them far too much but they’re just that important.

4) Involve them in some kind of ritual around your painkiller use sometimes. Not every time, obviously, but a compromise like “When I’ve taken my morphine and can’t have a real conversation, we can settle in with popcorn and watch those trashy old films you like”. Demonstrating over and over the difference betwen a morphine night (Relaxed, quiet, low-energy) and a pain-but-no-relief night (Crying, tension, possibility of a hospital visit, conversation always centred on pain) is a good way to get someone that you’re close to to be firmly on the side of morphine.

5) Reassure them that you want to be “you” as much as they want you to be you. I don’t know why so many people can’t see how upsetting and painful it is to be forced into a stupor against your will at unpredictable times. Especially when the alternative is blinding pain. There’s no win there.

I don’t know, there’s probably more, but that’s the stuff that comes to mind. Empathy is the key thing, really. And, well, good luck all of you.


Inspider by Dr Inky’s recent post I thought I’d talk a bit about sports and how sports and disability can go together really, really well.

Firstly – I’m not saying “Oh, all disabled people love sports and exercise” because that’s patently bullshit; You can’t say “All disabled people [verb phrase]” any more than you can say “All [non-self-selecting-group] [verb phrase]”, but here’s a couple of reasons why you might find more disabled people at your local sports centre than you might expect (if you assume disabled people to be unathletic) and thus why, yes, parking in the disabled bay outside the sports centre makes you a tosser.

1 – Exercise is fun

Not specific to the disabled, but exercise is fun. Plenty of people who don’t exercise much say that they would, if only they had the time. Disproportionate numbers of disabled people are out of work, whether because they’re signed off sick, or just because employers discriminate against them. So, we often have time to take up some kind of sport, or stick to a training regime, or start a class or similar.

2 – Exercise is social, and usually social in an easy way

Going to the gym is simple. You get to one building, usually wheelchair-accessible, and you can move around inside that building. There’s often somewhere to eat, there’s people to chat to, and you can arrange to meet people or not meet people as it suits you. There’s also staff on-hand so if anything does go wrong, you can be scooped up and put back together or sent home in an ambulance as-needed. Compared to a night out drinking, it’s easier to get some human contact without horribly injuring yourself or being stranded waiting for a taxi at three in the morning by doing your socialising at a sports centre.

3 – Exercise at a sports centre is more accessible than any other kind of exercise, usually

Think about how much exercise an ablebodied person gets, just by walking. Taking the stairs, going back and forth to the kitchen, walking between bus stops, ferrying things around at work. Now, imagine that instead of these things being something that you do without thinking, that they’re immeasurably painful and make you want to cry, and that at the absolute worst, doing them could result in you needing a hospital trip and surgery. For a lot of disabled people, it’s a matter of either planning in exercise at the gym, or getting no exercise at all.

4 – Exercise is often good for the soul, so to speak

On one hand, there’s nothing worse than someone saying “If you had any self-respect, you’d get fit” but on the other hand, the sense of ownership of your own body that’s engendered by getting really caught up in a sport is a delight. Having a condition where so much of what your body does is out of your control, being able to guarantee a couple of hours a week of testing it in controllable ways and making measurable progress is wonderful.

5 – Exercise is sometimes the only cure

We have physiotherapists, or we have instructions from them, which often say something like “Train until you need to be poured into a bucket and carried home, then poured into a hot bath and poached back into shape”. Plenty of GPs will prescribe exercise as well, and give us cheap and/or free memberships to the local facilities (For example – I have a card which lets me swim or gym at any session for £1.60-£2.20, as opposed to the more usual £3-£5, and which gives me access to a number of completely free sessions as well, which are usually at odd times of day but are still available at any council-owned facility in the county) because it seems to help a lot of people. In the case of EDS, the only “cure” is to be fit; I’ve been told by enough doctors that I need to be the fittest person I know to have the best chance of a reduction in pain and increase in function, and it seems to be true. So you’ll get plenty of people who treat the sports centre almost as a place of worship – Make sacrifices to the bitch-goddess, and be rewarded.

But, as the Senator’s post points out – Most people don’t make the link between disability and sports-centre-use. The idea of facilities for the disabled, at a sports centre, seems like a joke to a lot of people (as in “As useless as a wheelchair lift at the climbing wall”) but really make a lot of sense. Every four years we hold the Paralympics – Where do you think the athletes train for the other 1,200 days? And that’s just the people who get to international levels in their sports; Trust me, ablebodied reader, if I was to cut off both of your legs now, you would not be winning the 100m T43 sprint in Rio. Disabled athletes aren’t just “Good for cripples”, they’re just plain good. (Interestingly, no matter how severe the actual symptoms, EDS swimmers aren’t allowed to swim in any paraswimming category. This annoys me, as although I can’t compete with ablebodied swimmers any more, I still want to play. Any other bendies fancy a race?)

I would just love it if there was more awareness of disability sport as being a thing that people can participate in, rather than being just an inspirational macguffin that gets shown off twice a decade. Not just one or two Paralympians doing a lecture circuit (Although that would be amazing in its own right, and I would love to hear more) but more acknowledgment that we do sports in general; More depictions of disabled people doing sports, so that clubs are prepared when they get members with impairments. More people talking about the differences between going to disability-specific club, and being a disabled person training with ablebodied athletes. Likewise, more knowledge and facilities for sports played mostly by disabled people (From boccia and walking football to the terrifying sledge hockey), and more acknowledgment that they aren’t only played by disabled people; Plenty of people will play wheelchair rugby, even if they’re not even a part-time wheelchair user, usually to keep a wheelchair-using friend company, but still. And just ingeneral, an acknowledgment that, yes, someone can be elegant on horseback, or a brilliant archer, or unbeatable over a 200m sprint… But still need someone to tie their shoelaces or take them to hospital appointments.

In the social justice sphere, there’s been a couple of “body positivity” posts which seem to pit “super fit” and “in a wheelchair” as being opposite ends of a scale (Paired images, fat next to thin, tall next to short… you get the idea). And they really aren’t opposites, they’re two completely different axes. An office drone who lives on Greggs pasties and hates going outdoors will be less fit than a wheelchair user that’s really into rowing and weightlifting and has a freezer full of steamed chicken and broccoli for immediate post-workout protein. I reckon that we’ll have full equality when the world at large recognises that the disabled can be annoying gym-rats, just as much as the rest of the world.

I realise this was mostly just a ramble, but it’ll all get re-done into a real post one day. Right now, it’s just thoughts.

Swings and Roundabouts in the Rat Park

Yesterday night was a long, long night. Got to sleep around 4am, woke up at 5.30 after a nightmare that was violent enough that I fully dislocated my shoulder in it, leaving me basically trapped in bed, then dozed on and off unti leaving the house at 7.30 to get to my 8am GP appointment with Dr Hpm. I had five questions, and these are they, as I asked them, with the answers;

1) Can I get half of my Laxido swapped for glycerin suppositories?

a) Yes, of course. Here, have a non-repeat prescription for twelve infant-sized 1g glycerin suppositories, which the pharmacist advises “Oh, just take five at once”.

2) Can I have my NSAID changed to a stronger one?

a) Yes, of course, have some diclofenac. I somehow manage to leave without a diclofenac prescription though.

3) I’ve not slept normally since March, it’s making me exhausted and feel like shit, and I’ve been taking far more diphenydramine than I really want to. Can I have some help?

a) No, because you might end up addicted to sleeping pills. Have you tried a hot milky drink? (Literally. He actually invoked the legendary ‘hot milky drink’. He may as well have said ‘How about turning off all the screens and sitting quietly for an hour before bedtime?’ This ignores the fact that I no longer have a ‘bedtime’, and that I wake up screaming at least twice a night. He said that sleeping pills were only very rarely given out, nowadays, and that they were worse than heroin and stopped working after a week (All verifiably false, by the way, I know plenty of people who take zopiclone regularly and have done for years, and it still work.)

4) Can I have more diazepam, the stuff that everyone has been happily prescribing me on an as-needed basis for most of this year, and that has been the only thing to reliably stop the muscle spasms?

a) No, because it’s addictive. We don’t want you to end up with an addiction problem on top of your existing problem.

4b) Can I have a non-addictive antispasmodic then? I do need something to stop the painful spasms which can cut through heavy doses of morphine and turn my hands blue.

a) No, have you tried putting a heat pack on them? Or an ice pack? Two pounds of frozen peas, that’s the best thing.

5) Physio told me that my GP was the one who needed to sort out the investigations into my hip and give me the steroid injections. Will you?

a) No, ask Rheumatology.

In fact “Phone them up and ask yourself” was the answer to all my questions about other departments and trusts – Rheumatology, Stanmore (With the addition of “Say you’ll take a cancellation, that you’ll get down there at a minute’s notice”), CBT for Pain. Everything.

He was also very, very concerned about the fact that I used morphine as a painkiller. Worried that I was addicted. And lo, has kept me on half rations for a second month, meaning that I’m going to spend another month in pain. If you give me 60 tablets to last 30 days, and tell me to take 1-2 every 12 hours, I’m going to run out by about week three. Or I’m going to go back to rationing out my medications, and spending most of my time in a medium amount of pain. And sleep less.

But now, really, I want to talk about addiction.

The title of this post for once actually has meaning, rather than just being a random thought that’s popped into my head whilst loading the page. The Rat Park experiments were a series of experiments (no shock there) done on rats (surprise!) by Bruce K. Alexander that involved altering various features of their environments and seeing how willing they were to take morphine in various situations. The (simple) version of the outcome of the experiments was that there’s very little basis to assume that a drug-induced adiction theory is correct.

So, what’s drug-induced addiction?

Basically, there’s two ideas about how people become addicted to substances; Drug-induced addiction is that the very nature of the drug makes people addicted to it (This giving rise to myths like “If you take crack cocaine once, you’ll always need more, because you’ll be addicted”) and the other is that it’s the social factors around drug-taking that make addiction possible in the first place (Alexander’s words were “Severely distressed animals, like severely distressed people, will relieve their distress pharmacologically, if they can”). Effectively, if (as a human) your association with morphine is that it’s the thing that you take for fun and to get high, you’re likely to get addicted. If your association with morphine is that you take it to relieve pain, even though you’ll incidentally get high, you’ll possibly end up with a dependency, but you won’t end up addicted.

If you’re interested, look up Bruce K. Alexander’s papers on addiction, he obviously talks about it in much greater depth than I can here, and with much better clarity.

I am dependent on morphine. I sometimes take it at levels which could be dangerous for someone who is morphine-naive, and usually take it at levels which would make someone morphine-naive very lightheaded and drowsy. This is because I have a tolerance for it, which is another side effect of regular use. My need for morphine is because I have regular, acute, musculoskeletal pain, radiating from constant fresh injuries, for which I must take a strong painkiller. The strong painkiller which works best for me is morphine. Thus, I am dependent on morphine. If I was no longer in pain, I would no longer take it.

You probably know what addiction feels like – Most people have felt headachey and faint after missing their morning coffee, or short-tempered and generally terrible when craving a cigarette. And with that feeling of “urgh” comes a craving for more – More caffeine, more nicotine. If I go for a week without morphine, I don’t feel terrible, and more importantly I don’t crave more to take the withdrawal effects away. For the first day, I get a slight headache and feel stiff, bruised, sleepy and emotionally fragile, but my drug of choice to fix that isn’t “more morphine”, it’s a paracetamol, and lots of fruit juice, and maybe a nice heavy breakfast. If I was addicted, my first instinct on feeling that distinctive bruising around my eyelids wouldn’t be “Oh, time for a big cup of tea and a lazy day” it would be “Take the morphine.”

I’m dependent, I’m not addicted. And I know that having a life without hypermobility related pain isn’t possible, but that the best chance I have for getting somewhere close to that is a mixture of exercises and medication. And the medication makes it easier to do the exercise. Grim as it sounds, even if I was addicted – If I motivated myself to go out and do things with the promise of morphine when I got home – that would still be better than spending my entire life in pain and miserable, for the sake of not offending the puritan sensibilities of a doctor.

Ew, cripple sex.

Sorry. Just thought I’d get that thought out there before anyone else thinks it.

Right, yes.

I have a notoriously high sex drive. I love it. I have described it in the past as “That hobby that I can do when I’m too short on brains to do anything more complicated.” but it’s also a nice way of interacting with other people for the sake of interacting with them, or for having lots of nice physical feelings, or for feeling closer to the other person, or just to be nice to someone, or to find out a new sex-thing, or for all sorts of reasons.

And I am very, very aware of the importance of consent. Several years ago, the original shoelace-tier waited until I’d taken my evening medication, and raped me. That was a mess. Before that, an ex used to wait until I was so stressed and angry that I dissassociated, and then have sex with… Well, the other thing. I can barely remember. He stopped, when the other thing left him in a bloodied heap. Another used to semi wake me up in the morning, or at night, then pressure me into sex before I was fully awake.

And on a more personal level – I really hate the thought of having sex with someone who isn’t incredibly enthusiastic about sex at that time – Whether it be because they really want sex with someone now, or because they really want sex with me personally now, or because they want to try out a new thing, or give me a bit of a present, or try out a thing they’ve just heard of and thought I’d be good at, or whatever. I physically shrivel at the thought of hurting someone, or having someone be too polite or frightened to say “Actually, no, I’m really not interested”, or of continuing during sex with someone who has mentally checked out, but is acting the part so as not to offend me.

For the record, I know that sex with me isn’t always the easiest thing in the world.

I have Ehlers-Danlos Hypermobility. I can’t always support my own weight, or coordinate my movement. My joints dislocate easily, and at least my hips and shoulders, and usually my wrists, do as well during sex. Every time. Yes, I can put my feet behind my head. Yes, I can get my hands to places that you’d never normally expect to manage. But honestly, being alive and in this body all the time hurts, to the point that ninety eight percent of the time I’d rather just have a quiet wank in the company of nice people, and leave it at that.

I keep seeing a repeated meme in consent culture; “You can’t consent if you’re intoxicated. If you’re too high to sign a contract, you’re too high for sex”, and to a certain extent I agree that, if you’re beyond a certain degree of intoxication, you can’t consent. If you’re completely blackout-drunk, you can’t consent. There’s a big uncertain zone in the middle where you might really consent at the time, but where a sober-you wouldn’t consent. And then there’s where I exist, all the time.

I take morphine. A constant, low-level trickle from 20mg of slow-release a day, with more on top of that in the form of Oramorph – 10-30mg at a time. To be pain-free enough to even contemplate sex, I generally have to have taken about 20mg of Oramorph within the last half hour. At that point in time, I wouldn’t be able to sign a contract, drive a car, remember my seven times table or play chess. But it’s the only time I have in which to have really satisfying sex, that doesn’t hurt, that I enjoy, and that is practically possible.

Current thinking on consent means that, in order to toe the party line, I have to be celibate.

I don’t agree. I enjoy sex. I enjoy sex with other people, more than masturbation, and I want to be able to keep having it, even though I am usually “too intoxicated” by the “can you sign a contract?” metric. I have had a lot of sex whilst intoxicated which has been some of the most joyous of my life. I have experimented with new kinks and new partners. I don’t want all of that to be immediately grabbed by people with no idea of nuance who will scream “You’re in denial!” at me.

How’s it done? Talking. Endless talking. Discussion with anyone that I’m likely to have sex with which talks about what we both do and don’t like, and what consent and non-consent physically looks like whilst under the influence. Plans in advance of when it is all right and not all right to initiate sex. Discussions of the notable non-correlation of my physical response and my actual consent (Morphine can make you a little bit impotent, and conversely can give you inappropriate hard-ons at a slight breeze. I can be very up for it, but not quite up for it, if you see what I mean. Lots of lube and care needed). Slowly introducing any new sensation or position, and checking during the act whether we’re both fine with it. Gradually becoming more ambitious and fluid with repetition and familiarity and lots of non-verbal communication.

Not less morphine. Many, many years of painkiller avoidance has taught me that less morphine isn’t the answer.

So why does it annoy me so much, rather than just being another basically-good idea that gets lost in the nuance-free shouting of most internet discourse? “Nothing whilst intoxicated” is a good rule of thumb, isn’t it? Unless you’re really good at very honest communication, to a level of honesty that most people are scared by, just avoid the drugged sex and you’ll be fine. No big hardship.

But no. It’s not fine, because it’s just another thing which suggests that disabled people don’t have sex. It ignores that a fair number of us need drugs which affect our moods and judgement (Whether directly or indirectly) just to get through the day. We don’t need to feel lik, by having sex whilst continuing to take our medications, we’re doing something irresponsible or off-message. Our partners don’t need to feel like they’re probably raping us every time we have sex. If nothing else, it takes away our ability to define for ourselves that some interactions are consensual, and some are rape. The second person that I confided in, about having been non-violently raped whilst high on my own painkillers (Taken according to the packet instructions, thank you Tramadol), insisted to me that there was no difference between that and consensual sex with my partner. Repeatedly. Told me over and over that if I wanted to call ST a rapist and a bitch, I had to say the same thing about my partner. Until I was actually crying, and they were making sure that they’d won the argument with “I know it’s upsetting, but you have to accept that you’re being raped all the time!”

GPs, physios, and therapists over the years have been variously horrified, incredulous and disgusted that I was having sex at all. I’ve had one burst into giggles at my frustration at a medication which briefly destroyed my libido. I’ve had one actually say “Oh, but of course [loss of sexual function] won’t matter to you because…” and only stop when I gave her a stare that nearly made her combust. I’ve mostly just encountered dismissal and disbelief that my sex life could be a part of my life that I valued.

And this is because, in the public opinion, disabled people aren’t sexual creatures. We go to bed early, and drink cocoa, and have strange, beige appliances all over our houses, and wear ugly clothes, and socialise at carefully-shepherded daytime events. You’ve never known futility until you’ve tried to get a wheelchair taxi at 3am when you’re drunk. Our friends are angels and our partners are diligent carers, nun-like in their habits and acting as our chaste companions.

But yes, effectively – Until we get around the idea that someone can be on a lot of prescription medications that alter their mood or inhibition, but still be willing and able to consent to sex, we’re adding to the idea that disabled people aren’t sexual. And that adds to the infantilisation and othering of disabled people, and the isolation of their partners, and the dismissal of their relationships as somehow “not quite normal”. And that’s really, really damaging.

If you’ll exuse me, I’ll be in my bunk.

A Rebuttal to the Physician at the Centre for Policy Studies.

The Centre for Policy Studies (Motto “To question the unquestioned, to think the unthinkable, to blaze new trails”, or possibly “To generate hate-clicks”) released this lovely article today;

Illness as a Career Choice, by Administrator CPS

(Don’t worry, I’m going to replicate basically the whole thing below if you don’t want to give them clicks.)

The writer was “A physician with a practice in the North-West.” and honestly, the simple fact that nobody is putting their name to this suggests that they know that it’s basically hate speech, and that it’s doing nothing but add to the amount of discrimination and suspicion that disabled people are put under.

So, let’s begin;

It is vital that those suffering from disabling health conditions are well supported by the welfare system.

Excellent. We can stop there and go home for tea. No more input required, you’ve got it right.

However it is my belief that in some cases well-meaning welfare provisions can end up having severe unintended consequences.

Oh, goody. Please, share your wisdom with us. Anyone who phrases it like that is never going to go on to say anything like “Assessments and conditions intended to make the process fairer are actually hurting disabled people and often removing their safety nets from them.”


As a physician I have previously worked in areas with a broad range of demographics [Translation – Somewhere with nice middle-class people in it too, not just stupid tricksy povvos] and have seen the various stimuli that lead to and from ill-health. A fact that many [how many?] on the inside [who?], but few on the outside know is that a common driver to ill health is the welfare state [citation needed]. In short, it appears that being sick has become a way of life and a career choice for a worryingly high percentage [how high?] of the population. [citation needed]

So paragraph one seems to say “Us doctors think that people decide to be ill in order to get benefits”. If that’s really the attitude of most of the medical profession, then we’re going to need a radical overhaul of the whole system. Doctors are meant to treat the sick, not prop up the state’s scapegoating rhetoric.

Disability benefits have the potential to inadvertently encourage a state of dependency, and incentivise an individual to remain sick. [Because people can absolutely will themselves to not be ill! If I just concentrated a bit harder, my hips wouldn’t fall out of their sockets every few steps.] Two patients can have identical pathology – for example identical objective deficits from multiple sclerosis – but with striking differences in illness behaviour.

Surely, then, they’ve got a different pathology? Illness isn’t just “Objective defecits”, it’s a complicated interaction involving all of the body’s systems. For example – Someone with a lower Beighton score might have more pain that someone with a higher one, but the person with more pain may be more mobile. It’s complicated.

It its current form the welfare system is prone to misuse.

Figures released earlier this week by the DWP itself (July 2014), reminding us that only 0.7% of benefits are overpaid due to fraud, and that only 2% of benefits are overpaid at all. Just to put this concerned physician’s feelings into perspective.

For those in legitimate need, disability benefits can enable them and restore livelihood. For others however disability benefits can incentivise work avoidance.

Not certain how someone can be a doctor without knowing this, but some disabled people will never get better. And another friendly reminder that PIP (Personal Independence Payment) is an in-work benefit, paid to make up the difference between how much it costs to live as an abled person and as a disabled person. It’s about twenty to a hundred and thirty eight quid a week, and to get that highest rate you have to be extremely crippled – As in, unable to walk more than 20 yards, probably intontinent, incapable of washing self. ESA (Employment Support Allowance) tops out at about a hundred and eight quid a week, which isn’t exactly footballer money either. So yeah, if you’re willing to commit to living on less than £1,000 a month, before tax, to attend the jobcentre constantly for “interviews” with an “advisor” and to go on interminable training courses, and then to have to reapply for ESA again every year, which will leave you with a fourteen-week gap with no money in which you’re not allowed to work, and thus basically three months of living on £400-ish… All the while “faking” a disability, then be my guest.

But how extensive is the problem? How can a doctor tell if symptoms are being exaggerated? We are advised in medicine not to use the word malingering, but rather ‘subconscious amplification of symptoms’. It can be very difficult to know how much is subconscious and how much is amplified. One informal survey of colleagues from around the UK placed the figure at between 10% and 90%. Interestingly, if the question is restricted to doctors working in areas of high unemployment then a much higher figure is reached. This is of course not surprising as the alternative prospects for individuals are far more limited.

The colossal margin for error and the increase when looking at areas of high unemployment actually says a couple of very different things to me; a) That an “informal survey of colleagues” means “I phoned some of my mates and they agreed with me” and b) That this has a lot to do with the subconcious prejudices of doctors against the poor and working-class.

It’s a vicious cycle – Doctors “know” that the poor are just out for all they can get, money-for-nothing, and probably drug-seeking bad-back-fakers, and thus doctors observing poor patients in pain will assume that they’re malingering. And no, dressing it up as “Subconcious amplification of symptoms” is just a code word. That’s like saying “I didn’t say you were hysterical, I said that you were suffering from delusional and disproportionate anxiety”. Wrapping things in prettier words whilst maintaining the underlying bias is not progress.

As an illustration, an intravenous drug user I once saw had lost use of his arm because of a drug-related incident. When I told him that he would not recover the function of his arm I was expecting great disappointment, but instead got the surprising reaction, “great, does this mean I will get benefits?”

That actually sounds like the kind of gallows humour I’d use in that sort of situation too. It’s the writ-large version of “Migraines are hell, but at least I never have to buy eyeshadow”.

When the disability reassessments were introduced a couple of years ago many colleagues saw a sudden and unexpected worsening in patients symptoms. Patients who previously had well-controlled epilepsy reported more seizures or that their pain had worsened. As well as costing the system, it also makes the doctor’s role difficult in trying to judge what is true illness and what is amplified, leading to more investigations, more hospital appointments, more drugs.

Translation: “Sick people suddenly placed under a lot of stress had massive flare-ups of their condition.” Anyone who is shocked by this needs to go back to first year.

Such over-dependency can have a distortionary effect on the wider economy. Individuals on chronic welfare [That’s a new way of making long-term claimants sound suspicious! And it chucks in a nicely ableist comparison too! Well done!] increasingly move from the affluent South-East to the North because there is a greater availability of social housing, and living costs are lower.

Translation: “Poor people in going-where-it’s-cheaper-to-live shocker”. And let’s not forget that London is exporting its council tenants.

In contrast, talent migrates from the North to the South-East because of better prospects. This then compounds the situation. It is an interesting observation that the area of the country with by far the lowest per capita spend on infrastructure, the North-East of England, has the highest welfare spend. In effect, successive government policy has attempted to enforce a deal on the population of providing the South with the investment and tools to generate the returns and then transfer some of this to the north in welfare payments. In crude terms, investment follows place (South), welfare follows people (North).

That is probably the worst attempt at understanding cause-and-effect that I’ve ever seen. If you put it as “Due to the Government’s failure to invest in the North East, a large percentage of its most able inhabitants have moved south, leaving disproportionate numbers of poor and less-educated people behind. Sometimes people are poor and less-educated due to disabilities which make it difficult to work or study.” it places the blame more solidly at the correct door. Also, the further use of the North East as being a land full of mythic benefit-cheats and lost-causes is really, really classy. Nothing like using a cheap and unfair stereotype to back up your bigoted views.

More importantly, over-dependency is not good for the individual. They become locked into a way of life with reduced well-being, and the attendant inactivity for many patients leads to further illness and obesity. Most significantly, I have observed that not working can result in a loss of sense of purpose, of personal value of being in a team.

Another paragraph of “People are only ill because they’re not trying hard enough!” followed by;

Not only does the current welfare system incentivise false claims, it can also overlook legitimate ones. Many doctors have patients who they think deserve benefits yet don’t get them. Or the receipt of benefits is unacceptably delayed.  Thus there is a mismatch between patients on long-term benefits driven by the financial incentives of the system and becoming less employable, but other patients who we desperately want to get better and faster support. In essence, the disabled are suffering from the actions of others.

Which seems to be trying to place the blame for the DWP and Atos’ slow processing of claims onto the 0.7% of fraudulent claimants. But since the writer won’t admit that it’s only 0.7% of claimants, it’s basically an attempt to divide the disabled, and to make them look at each other and see enemies and fakers. And I’m fairly certain that the “patients who [the doctors] think deserve benefits” is basically code for “Nice middle-class people”, especially since I can only assume that this is from the same survey as the writer’s earlier “informal survey” of their friends.

Why does the assessment system not weed out such cases? [Another reminder of that MASSIVE 0.7% fraud rate, by the way.] Firstly, I believe that welfare assessment should focus on what can be done, not what can’t be done. The ability to accurately assess disability and levels of dysfunction can be very difficult. In some cases even skilled physicians with decades of experience can get it wrong. [And yet the DWP believes that an hour with their nurse is more valuable than several years with your own consultant] The inaccuracy that results is compounded further by the current assessment procedure, which pressures physicians to not be entirely open. This is because the patient can review the report before it is sent off for approval. A doctor’s performance is determined by their patient throughput and number of complaints received. Thus by conceding to a patient’s expectations a doctor can avoid a potentially hostile confrontation and complaints on their record. Indeed the degree to which patients can pursue doctors who do not give them what they want is so great now that once one has been bitten, the easy option is much more likely to be followed.

Shock! Horror! Doctors might have to actually consult with patients when talking about them to a third party! Patients might have more input and insight on their daily lives than a doctor has, despite the doctor seeing them probably less than once a month and the patient only being with the patient every day! If you’re a doctor, and you’re getting endless complaints from patients who think that you’ve misjudged them and who are demanding a higher standard of care… Maybe you’re just not a very good doctor. Maybe you need to look at them with a little bit more compassion, and actually listen to their problems and trust that most people are really quite understated when talking about their symptoms. Maybe you need to question what you think the role of a doctor is, if you don’t believe that they should be accountable to their patients.

In this regard I believe the views of the ex-head of the NHS litigation authority were shockingly naive when he stated that if we eliminated errors there would be no complaints. In reality the relationship between errors and complaints is surprisingly shallow. [citation needed]

Some doctors will provide diagnostic labels which provide a potential ticket to benefits, which if examined closely are part of the normal spectrum. A common example I see is patients being diagnosed with joint hypermobility syndrome with associated pain.

Because apparently this still needs clearing up;

Being A Bit Bendy is the state of having very supple joints which allow you to attain postures considered unusual by most people. It is not painful.

Joint Hypermobility Syndrome is a condition which involves defects in the production of collagen and the sometimes the formation of bones, which results in chronic pain, complications in multiple organs (Skin, gut, heart and eyes being the most common) adrenal problems, digestive problems, anxiety and depression, and a whole host of other problems. The DWP even has guidance on it, so possibly the writer just needs to learn to use Google. There are a huge number of ways that hypermobility and “being a bit bendy” are really, really difficult and I would have thought that was the sort of thing that someone had to know to be a GP. Kind of like telling the difference between being a bit short and being an achondroplasic Dwarf.

Anyway, not far to go now;

When does a flexible patient become hypermobile, and why does this lead to some developing chronic pain and on benefits?

The first half of that question is actually really interesting, but is still better phrased as “Why do some hypermobile patients remain asymptomatic, when some have serious losses of function and chronic pain?” since we’ve already determined that “flexible” and “hypermobile” aren’t really related. There’s huge amounts of research being done by various EDS foundations to try to work out how to keep us asymptomatic, because it gives us a better quality of life. The “On benefits” part of the question is probably best answered with a very simple “If someone is really badly hurt, and can’t work, then the nice Government gives them money so that they don’t have to beg on the streets. If they’re not hurt, the government won’t give them money, and they have to go to work. The government takes a tiny little bit of money from all of the non-hurt people who are at work, and gives it to the people who are hurt.” but that’s the kind of explanation that I would expect to give to a toddler, not a physician.

Or take depression, which affects 1/3 of the adult population at some stage. There is a big difference though between someone needing sectioning and ECT, and someone needing citalopram and a bit of cognitive therapy.

There is a big difference – And that’s why someone who takes a little bit of Citalopram for a few months isn’t going to get disability benefits. Or if they are, it’s going to be at a very low rate, and it’s basically going to make getting to-and-from work easier for them, so that they get to keep their job. More likely though, they’ll at most be signed off with statutory sick pay for a few months, then go back to work as soon as they can. Because not everyone who applies for benefits gets them – The type of mental illness that gets you disability benefits of any kind is the type that’s lifelong and absoutely wrecks your ability to function.

That’s the end of the main article, by the way. The writer seems to think that this is some kind of trump card. They then go on to some “Proposals”;

 1. Doctors reports should be anonymised and made confidential. The current forms are better than the previous ones, but need support from non-assessment service doctors and this will work best if those doctors can be open and frank.

Counterproposal – Doctors should discuss with their patients what their expectations are and encourage them to be honest about their symptoms. Doctors should believe their patients, because they’re doctors, not detectives.

 2. Illness/disability benefits assessments should be designed to identify activities which an individual can do, not what they can’t do. The Government must encourage the full range of mental, physical and social activities. [Orwellian, much?] For example, if an individual took extra welfare support for one domain, they would be required to utilise other domains. e.g., if a patient were wheelchair-bound but had full mental faculty then financial support would be provided to assist with mobility only if they were active in terms of work (even if only voluntary work) that required their mental faculties or social engagement. Conversely an individual with mental health problems and unable to function in a stressful work environment could be supported in using their physical abilities, for example with manual work or even befriending lonely elderly individuals.

Counterproposal – We do not have to prove ourselves useful just to survive. The writer’s attempt at making a mind/body dichotomy is ridiculous. This whole section is even worse when we remember that they’re talking about people who are currently just considered to be too ill to work. Physical illnesses come with pain that makes it difficult to concentrate. Physical illnesses often result in simple tasks like getting dressed or eating a meal taking much longer than normal, thus making it impractical to work, since the employer could not rely on attendance. Mental illnesses cause fatigue and lack of energy and inability to socialise – It’d be downright cruel to the elderly to inflict depressed-me on them, for starters. Having obligations to the Government, which you have to complete to get paid your benefits, is incredibly stressful even if it is just “Manual labour” and I can’t imagine that being good for the mental health either.

3. For conditions which can be ameliorated by the action of the individual, greater emphasis should be placed on determining the right balance between disability payments and programs that emphasise greater personal responsibility for recuperation.

Counterproposal – I do not want this writer, or anyone who has as little contact with me as an ATOS nurse or a DWP official, deciding for me what the “Right balance” is between giving me money to let me continue living, and taking money away from me as a punishment for not getting well fast enough. Funnily enough, having money allows claimants to do things like get to their hospital appointments, go to the gym for physiotherapy, buy healthy food, keep going out to maintain a sense of self-worth, and things like that. Basically, all the things which give them a higher chance of one day rejoining the workforce. And they’re more likely to do those things if they aren’t being forced to do them on the DWP’s timescale.

Honestly, I hope that the original article was written as a deliberate parody.

Physician, how do you justify your position, considering that it’s so based in a mixture of ableism, victim-blaming, class stereotypes and having swallowed the Tories’ spin hook line and sinker?

Yours faithfully,


(A proud Geordie with a bad back, hypermobility syndrome and depression. So probably just worthless scrounging scum, really.)

Pain, and her many handmaidens

I am in pain as I write this. My right wrist has a hot ache, which runs up to the base of my fingers and cuts through my palm. Both of my elbows are stinging – Familiar tendonitis, startlingly unpleasant and made worse by the action of typing. My index fingers feel as if they’ve been caught in thumbscrews, and stretched and snapped. My back, from the base of my skull to the tip of my tail, is sore, with particularly tight, crushing pains at the nape of my neck and across my lumbar vertebrae. No matter how much I move, it feels as if I am being folded and twisted and wrung out. My right hip feels as if it’s being torn out of the socket, bent around backwards as far as it can go – Of course, it’s actually crossed in front of me, Indian-fashion, the most comfortable position for a femur to be in.


1) Pain comes in many different qualities. I have tried to categorise them a size (The physical area they cover), pervasiveness (How easily the pain is ignored, or how much you can continue with your life whilst in the pain), intensity (How much it hurts), immediacy (How suddenly the pain appears, or increases/decreases), duration (how long does it last for) and finally the very subjective quality or pitch (Is it stabbing? Shooting? Electric? Crushing? Twisting? Burning? Tingling? I always think of it as pitch, because I feel pains as either high- or low-pitched; An ache is a bass rumble, the electric zap of a migraine is a high treble, a dislocated hip is a contralto howl, a dislocated shoulder is a mid-tenor at full voice). Trying to categorise pain on a one-to-ten scale is meaningless.


2) Not everyone reacts to pain the same way, and not everyone reacts to different pain in the same way. Someone may hiss out-loud at a cut finger or a touched blister (Size: small, pervasiveness: high, intensity: low, immediacy: high, duration: less than a second, pitch: high), scream at having a tooth pulled, but go completely vacant and soft at having a shoulder dislocated. Or indeed, the same dislocation might on day one cause nothing more than a grunt, and on day two result in the same person curling up into a ball and sobbing.

Because pain is, by its very nature, subjective.


3) Damage causes pain, and pain causes damage. We all know that if something hurts, we should probably stop doing it,  but the corollory to that is that we should stop pain becaus ethe pain itself is damaging. Pain increses cortisol, increases the heart rate, makes muscles cramp and spasm, which can damage tendons and ligaments and tear the muscles themselves.

Pain decreases appetite, meaning that you don’t eat enough and thus don’t have the energy to repair damaged tissues as cleanly. Pain makes it difficult to sleep, which means that the muscles don’t get time to relax, and can cause themselves more damage.


4) Pain still has effects, even when you’ve taken analgaesia. If you’re in enough pain that your blood pressure is spiking and you feel faint, it’ll take more painkillers than just the amount needed to block the immediate pain to deal with that. You might still be light-headed or dizzy  or making descisions as if under a lot of pressure, just because of the residual effects of the pain.


5) The double-bind of pain. There are certain people in the world who do this;

-If I’M not crying out in pain, it’s because I have amazing willpower.

-If YOU’RE not crying out in pain, it’s because you’re not in much pain.

-If I’M crying out in pain, it’s because I’m in the kind of pain that you can’t even imagine.

-If YOU’RE crying out in pain, it’s because you’re weak-willed.

-If X is the worst pain I’VE ever felt, it’s because there is something special about X pain.

-If X is the worst pain YOU’VE ever felt, it’s because you’ve not been exposed to the really bad stuff.

-If I say “X is no worse than Z”, where Z is something like a bee sting, I’m being brave and noble.

If YOU say “X is no worse than Z”, then you probably haven’t really felt X.

Even people with very good intentions will do this. People who are trying to get across that their pain is more severe than yours will do this, even when it is perfectly valid to say that their pain is worse than yours. People who are trying to reassure you will do this. People who are trying to suggest that they are better than you will do this. Basically, everyone does this. I know I’ve done this, and it’s taken a LOT of training to stop myself, since it’s something so ingrained into how we determine status.


6) Believe people when they talk about long-lasting pain. Just trust me on this, it’s hard to explain how constant pain can become a normal part of daily life, but it can. It’s not something that you “Get used to” or “Get over”, but it’s something that you can get on with life whilst having. It’s not less painful, just because it’ been around for a while.


7) There’s a difference between chronic and recurring-remitting pain. Broadly speaking, chronic pain is chronic, recurring pain is episodic. Both have flare-ups, but chronic pain tends to be neuropathic in origin and thus never *quite* goes away, whereas recurring-remitting can be gone for hours to weeks before returning in full force.


8) Be gentle with yourself when you’re in pain. This should be obvious, but you know when you’re in pain, and there’s a strong, instinctive urge to just lie down and rest? Or to sleep? Or to let someone else finish building the wall or carry the bags or make the tea? Take notice of it. Take painkillers as soon as you feel a twinge, allow yourself to write off the day, and do something low-energy. Listen to the radio, watch TV, daydream. Cultivating a fairly in-depth inner world is the way forward, because then you’ve got somewhere to go when your body hurts too much to even think about reality. If you need to meet work or academic deadlines, tell the people in-charge of them well in advance that you sometimes have pain days, so that when you are in pain you need only send them a one-line email or a quick phone call, and they’ll know what to do.


9) Learn the difference between safe pain and unsafe pain. This isn’t a perfect world, so sometimes you’ll have to push through pain to get things done. Work out which pains you can “defer”, and deal with by resting properly later, and which ones need to be adressed immediately. All pain can cause long-term damage, but only some of it will immediately put you in danger (The pain that precedes muscle weakness and falls, for example). Learn, and it’s very personal to you, which pain can be temporarily ignored for the greater good, and which can’t. There is a sliding scale between “Pain that I will ignore in order to do a fun thing” and “Pain that I will only ignore if the alternative is being hit by a train”, and where you put those lines is up to you.


10) I can’t think of anything else right now, but there’ll probably be a part two later.