BADD 2017- Six ways disablism makes it harder to live with chronic pain

Today is Blogging Againgst Disablism Day 2017. Please check out the main page to read other contributions or add yours to the archive.

[Content warning for abstract discussion of mental health stigma, skepticism about illness, pressure around exercise, drug addiction.]

Audio for this blog post is here:

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Last autumn, as has happened twice before in the twenty-one years since I got sick, my pain became suddenly and inexplicably worse. Since then, pain and pain management have become more dominant features of my day. Lately I've been thinking about the ways in which disablism makes life with chronic pain tougher than it needs to me.


1. Pain as suffering.

My love for Stephen, as well as my friends and family is the most fundamental fact about who I am. However, if I were to die in an especially strange or amusing way so to make headlines, news reports would not read, “The Goldfish loved her husband, friends and family.”

The would instead say, “Sources have said...” or “The Goldfish has been described as loving her husband, friends and family.”

This is because it's not something that strangers can know. I'm married, I know these various people and am related to that bunch, but for all anyone else knows I can't stand a single one of them.

Yet, in this hypothetical report about the fatal inflatable crocodile accident, I can guarantee that it would read, “The Goldfish suffered from chronic pain.” or “The Goldfish was a sufferer of chronic pain.”

This is something else a stranger cannot know. It's very unlikely that I would have enjoyed chronic pain, but suffering, and especially my identity as a sufferer, is a presumption.

I have chronic pain. I am in pain right now but I am not suffering. Sometimes I suffer, but this is not a fundamental part of who I am. I am not a sufferer.

I have become especially sensitive to this as pain has rendered the enjoyment of life a little more of a challenge. Several people, including myself, have been working very hard to ensure that I am not suffering most of the time. I just have pain. I am a person with chronic pain.


Of course, I am extremely fortunate (and I'm going to mention this a lot). Chronic pain can be a thousand different things and I am very lucky with the type I have; my pain is sometimes severe, but when I hear about other people's pain in different parts of their bodies, I always imagine I have things a bit easier.

Meanwhile, for many years, pain had a far more profound effect on my life because my circumstances were so much more difficult. This bad pain period has made me somewhat more isolated, but not as much as it once would have. It has not resulted in poor diet due to my inability to get food for myself. It does not make it harder to stay warm because I can afford to have the heating compensate for moving around less. It makes it harder to get clean and dressed, but I have help with that, various different ways of keeping clean and I am not going to be mocked if I look a little unkempt. I have even been offered carers to come in and help with getting dressed every day, but I don't really need or want that. As I pointed out to Social Services, I do have very nice pyjamas.

For a long time, I was in no position to manage my pain, received very little help and any deterioration of my health and mobility was met with an increase of anger and violence towards me from the person I lived with at the time.

All this is about circumstance, other people and culture rather than the pain itself, but it effected the way I framed my pain as a sort of punishment or my body's treachery. It helped me stay angry with my body and myself to some extent. There seemed no way of making things better.

As with all aspects of impairment, we experience pain in a context and there's always a danger of mistaking that context – almost always the product of our disablist culture – for the effects of pain itself.


2. Physical suffering as legitimacy

In the management of chronic pain (or indeed, any health condition), there are two strategies which will do us no good whatsoever. The first is to pretend it's just not happening. The second is to focus on exactly how bad it is, the way pain penetrates our thoughts, everything it stops us doing and how much worse it could be, how unliveable, if we were somehow forced to push harder.

Yet every year or two, the government sends me a form and asks me to do just that. Some of these forms are about my incapacity to perform full-time paid work. Pain contributes to this incapacity, but by far the biggest factors are fatigue and cognitive dysfunction. Often, I am simply not conscious for enough hours in a day to hold down a job.

The government are far more interested in my pain. Pain is physical, pain is suffering and pain is legitimate. The fact that pain prevents me walking or self-propelling a wheelchair more than a few metres is the reason I am found incapable of working. Someone with agoraphobia who might collapse, hyperventilating before they made it more than a few metres from their front door would not pass this test and they can't even hope to raise money for a piece of kit like a powerchair which might (partially) mitigate that limitation.

As the UK benefits system has become more ludicrous and cruel and disabled people have inevitably become more defensive, I see more people associating our political oppression with how much pain and suffering we experience. We're in agony - we shouldn't have to go through this! We're in agony - that's physical, that's suffering, that's legit!

We shouldn't go through what we do – the scrutiny and doubt, the trick questions, the sense of having to justify our existence. But nobody should go through this. Nobody should enter into any process under the working assumption that they are trying to commit fraud. There is nothing special about physical pain.

All games of legitimacy are disablist games which hurt other disabled people. But they can also effect our own relationship with pain and impairment. If we believe that any functional limitation we have – the inability to work, the need to use a wheelchair or any other kind of assistance – needs to be justified not just with difficulty but with suffering, it becomes extremely easy to start second-guessing ourselves. So we're in pain, but are we really in that much pain? Could we push ourselves a little harder? If we are enjoying life at all, does that mean we're not truly suffering and cannot ask for any accommodations?


3. Silence as stoicism

These days, I talk more about my pain than ever before. It's difficult and requires me to overcome significant programming. During years of domestic abuse, any mention of pain was met with an accusation of “milking it” but it's not just that. Our culture wants disabled people to suffer – and legitimises those who suffer in the right way – but it also wants us to do this suffering as quietly as possible. To be silent is to be stoic. Admiring voices often comment, especially after one of us has passed away, that “they never complained! They must have been having a terrible time, but they never said so!”

Which begs the question, did they actually have so very much to complain about? And if so, why celebrate the fact that a person was in so much distress and yet felt unable to talk about it with anyone? That sounds like a  really sad situation, not an admirable quality.

The pressure to stay quiet comes from the Tragedy or Charity Model of Disability. This is about showing courage or stoicism as a way of fighting against our supposed tragedy. A silent battle is particularly appealing to the dominant culture because it allows others to project whatever they need onto our story. They can have us suffering dreadfully, to be living symbols of their compassion towards those less fortunate than themselves, when of course our lives are more complicated than that. They can have us not wanting to cause a fuss, when perhaps really we're silenced by the fear of being seen to cause a fuss.

True stoicism is, of course, about making the best of what you've got, focusing on the positive and putting the negative in perspective. Seneca, granddaddy of Stoicism, advocated thinking through the very worst things that could happen to us, partly so we realise they're not all that bad (depends on your imagination), partly so we can prepare ourselves for disaster rather than hopelessly worrying about it, and  partly so we can appreciate it when these things do not transpire. Fingers crossed!

True stoicism is not about gritting one's teeth and denying reality – on the contrary – but too often we describe a person as “stoic” when we mean “they've got it bad, but they don't complain”. And as well as silencing us, this can impair our access to effective pain management. I've heard folk being described as stoic when they won't visit the doctor, when they take risks with injuries, when they refuse disability paraphernalia. Or indeed, when they refuse to take the drugs they might benefit from.


4.  Drugs and judgement.

Thing is, some people take drugs that do them more harm than good, or are a waste of time and money. Some doctors prescribe drugs because they feel that's what patients want and it's much cheaper and less bothersome than other options. People – especially older disabled people – can end up getting prescription drugs on repeat for years without proper review. People are on drugs for conditions which could be greatly improved with things like psychotherapy, physiotherapy or nutritional therapy. And of course drug companies are all about making money.

But none of this means that we get to pass judgement on a jam-packed dosset-box.

The fact not every drug prescribed may be the best solution to that particular problem is the price we pay for the vast majority of drugs which either save or transform lives. The fact almost all drugs have side effects and increase long-term risks of medical complications is the price individuals pay for staying alive or having a much more manageable life, even if it turns out to be a little shorter. The fact that non-drug therapies are massively underused in medicine doesn't mean that these are things people should be (or even could be) engaging with instead. These decisions are personal and often medically complex.

There's a stigma attached to pain medication. There are folk who refuse to take an aspirin when they have a headache and imagine that whatever noble principle they're exercising can and should be extended to others with different sorts of pain (which is anyone who doesn't have the exact same headache). I'm going to talk about opioids in a minute. However, by far the most stigmatised drugs are anti-depressants.

A counter-meme: "If you can't make your
own neurotransmitters, store-bought is fine"

I still see memes picturing a pile of multicoloured pills, contrasted with a beautiful scene of nature, stating that the former is garbage or poison or similar and the latter is a cure for depression. And again, it's not as if spending time outside in nature has not shown to be beneficial for people's mental health. Ditto meditation, spending time with animals or children, exercise, gardening, art and crafts, team sports, volunteering in projects that directly help other people and so forth. A more comprehensive health system would be able to point people with all kinds of chronic ill health, plus those at risk of future problems, towards some of these activities and it would reduce the number of drugs prescribed (although, of course, it would hardly cut costs).

Even if all non-drug therapies and activities were made more accessible and affordable, people would still need drug treatments. It would be much better if we lived in a world where these drugs were more often only part of a treatment that involved all kinds of other therapeutic goodies.

Apart from the should-be obvious facts that these pills and injections save our lives and make our lives more bearable, drug stigma and the idea that we should be doing other things, adds unnecessary pressure to people with chronic conditions.

Almost anything disabled people do is often framed by others as “therapeutic” which is irritating enough (maybe even more so for disabled people who are in perfect health). Bring in this idea that nature walks or art classes could eliminate our need for the drugs we depend on and it becomes harder to access all manner of activities without feeling that we need to be looking for some kind of significant healt outcome.

"Take the stairs!"

Exercise is probably the worst example of this. Exercise is very hard for a lot of people and downright scary for some – people with chronic pain are not alone in feeling some horror at the prospect of having to spend time focused on our bodies, the way they work and the way they feel.  People with mobility impairments are forever ignored in calls to Take the stairs! or even Take the train! given the poor state of accessibility on public transport. In our culture, exercise is often presented as highly goal-oriented (usually around size), and is often proposed as cure-all/ punishment; Get your arse down the gym! we are commanded on the grounds of any one of many diagnoses associated with poor mobility.

I exercise every day in such a way many people might fail to recognise as exercise. Even so, it takes a lot to overcome the sense that I should be building myself up to something, looking to increase what I can do, trying to lose weight (which, with the exercise I do, would take a very very long time) or indeed trying to reduce the drugs I'm taking. Sometimes my exercise might contribute to being able to drop a dose of one thing or another, but if I made that the point of exercise, I would meet with disappointment almost every day.



5. The high melodrama of opioid painkillers

In September, morphine moved from being a bad day drug to an everyday drug. Unlike all my other meds – including almost twenty years of different opioids - morphine is something people have heard of, it's something people associate with acute pain, but also abuse and addiction. It's a drug that comes up in song lyrics from time to time. Nobody ever sings about Movacol.

I was reluctant to take morphine at all and once I was taking it regularly, I was nervous that my GP might be alarmed at how much I was taking. Friends and family have expressed particular concern about it, as if being on morphine makes my pain a serious matter (like it wasn't before?).

More than once, my GP has assured me that I'm not that type of patient (the type whose drug use would concern her) and I realise that – as well as my GP being generally awesome - there's probably a large degree of privilege in coming across as sensible, responsible and self-aware enough to know if I was running into trouble.

I'm also very conscious of my good fortune living in a wealthier part of the world, where seeing a doctor is free. My prescriptions have always either been completely free (they are currently) or have cost around £100 a year on a pre-paid card. I have never had to make decisions about drugs as a consumer. Nobody has ever tried to advertise prescription drugs to me.

I'm aware that for friends in the US, anxiety over opioid addiction is making it very much more difficult for people to access appropriate pain control. As I understand it, a huge part of the problem there is around money; a minority of chronic pain patients sell prescription drugs on because being sick there is extraordinarily expensive. Some patients move onto heroin (entirely unregulated and unmonitored) because it is cheaper than getting a prescription. When both doctors and their prescriptions are expensive and patients are mistrusted, folks are forced to self-medicate. And if you can't afford regular daily painkillers – by far the best regime of managing chronic pain - it would be tempting to splash out on the occasional pain-free night when the cash is available. In such circumstances, even drugs of established provenance become extremely dangerous.

The US saw 50,000 opioid-related poisoning deaths in 2015. The US population is only five times bigger than the UK, yet all our poisoning deaths, involving every kind of drug or substance, totaled under 3700.

The danger of a drug – any drug - is highly contextual. Morphine is almost certainly less addictive than alcohol and yet we still cling onto the (disputed) idea that a glass of wine every day might be good for you.  There's also a huge difference between chemical and psychological addiction. I am  chemically addicted to dihydrocodeine, another opioid – its sustained release, so there's no buzz to be had, I just get really sick if I miss a dose. However, if I didn't need it any more, I would cut down in increments and suffer minimally. People do that all the time. Many people take strong opioids after injury or surgery for a few weeks or months, but others come off these drugs after a period of years; my Granny has weaned herself from morphine twice in the last decade. My father-in-law went practically cold turkey from morphine following an operation to fix his back.

Psychological addiction is an illness in its own right. It doesn't start with a drug so much as the problems a person has which the drug (or gambling, shopping or any other compelling behaviour) allows some temporary escape from. Drugs, their effects and the cost of acquisition then play a role, escalating a significant problem to a cataclysmic problem as money, work, health and relationships fall under. Sudden withdrawal from opioids is horrible, and with emotional distress in the mix I have great sympathy for folk who feel utterly desperate.

Having chronic pain doesn't magically protect a person from emotional pain or psychological addiction stemming from it. But this risk is not mitigated by suspicion and restriction of essential pain meds. The thing that makes my drug use particularly safe is my trust relationship with my doctors; I trust them and I feel trusted. If something did go wrong, I would be in the best possible position for getting appropriate help. I know way too many people who are not so fortunate.



6. The physical/ psychological false dichotomy

Yawn! (A yawning alpaca)

Most of us can deceive our brains at least a little bit about what's going on in our bodies. I think I'm more suggestible than most. I have this problem with empathy whereby I violently flinch and sometimes cry out when I witness realistic injuries on TV and in movies. If I watch or read something set in a cold climate, I start shivering and if conversation should turn to the subject of fleas, headlice or similar, I'm going to have to sit on my hands. Oddly enough, I do not catch yawning off other people despite living with fatigue. I think my yawn mechanism is broken, but I still have the power to make others yawn by talking or writing about it. Open wide!

All this stuff doesn't mean that hunger, extremes of hot and cold, fatigue, itchiness, pain and the rest is all in our imagination, or that feeling any of these discomforts, we can trick our brains into imagining our bodies are comfortable. Discomfort indicates a problem, and evolution has rendered us incapable of ignoring it altogether. But psychology is a really useful tool in chronic pain management. Anything which can help distract from the pain, make the pain less frightening, less mysterious, or feel less like a punishment or a betrayal will make pain less painful and make us more capable of looking after ourselves.

Unfortunately, many people with chronic pain have very good reasons to feel terrifically defensive about psychological influences on pain. The gentle tool of psychology has been broken in two, with one end carved into a very sharp point and nails hammered into the other.

Most pain has a physical origin. It is possible for emotional distress to manifest in physical pain and of course, emotional distress often triggers bodily events (raised blood pressure in the head, muscle tension in the neck, reduced blood flow to the digestive system etc.) which can result in or contribute to pain. However, psychosomatic pain occurs only in people in considerable emotional distress and even when they know that's the nature of their pain, it cannot be reasoned away.

Unfortunately, we live in a culture which persists with this dichtomy between ill health or injury which is physical, real and therefore legitimate and health problems which are psychological, imaginary and therefore basically non-existent. These ideas are not restricted to the pub loud-mouth; this dichotomy is highly profitable. Insurance companies, government agencies and the companies they employ are heavily invested in a bastardised biopsychosocial model
of all impairment which uses mental health stigma to allow discrimination against as many disabled people as they can possibly cast some doubt upon.

Many friends with chronic pain and other physically-manifesting symptoms have had doctors struggle to find a physical cause, only to hold up their hands and say, “Well, it must be all in your head, nothing I can do. Just go away, get over it and get on with your life.”

Gratefully, this stuff is much less common these days – I get the impression the generation of doctors who just couldn't cope with someone whose condition was not easily identified and swiftly cured are fast fading away. But what these folk experienced wasn't misdiagnosis – it was dismissal. They were rarely sent to any kind of mental health professional, despite their dramatic and (in psychiatric terms) atypical symptoms.

What happens more often today is a little more subtle. My father-in-law was sent to a back pain support group before he had even received a diagnosis for his by-then chronic problem. This was – as was agreed among everyone present, some of whom were unable to stand up straight or walk – a holding pattern, a humiliatingly pointless exercise to slow down the flow of traffic to the various clinics these people needed to attend. Some folk would almost certainly drop out at this point – their condition might improve on its own or they might spend the rest of their life in unnecessary mysterious pain – but at least that would be a few off the waiting lists.

The idea of an NHS-run chronic pain support group is great, but not before an attempt at diagnosis. I know others who have been sent to similar NHS-run support groups at the wrong time, when they've been seeking some other kind of help, and instead of thinking “Well, this group will help me gain knowledge and get perspective about my pain condition,” they have, quite reasonably, felt fobbed off, as if they were being asked to simply think positive thoughts to wish their pain away.

Even though we don't always understand what is happening to us, we are experts in our own experience. To feel doubted or dismissed about such a profound experience as chronic pain is deeply traumatic. And if you begin to doubt your own chronic pain, therein lies a whole world of trouble; it is very much more difficult to look after your physical health, to not push yourself too hard, to medicate or sooth your body when things are bad. But most of all, of course, if you are conjuring up this kind of pain while feeling otherwise okay, what does that say about you? If you think you are in reasonable mental health, but are in fact in so much distress you are manifesting pain, how can you trust anything you think or feel?

So when folk are defensive about the purely physical nature of their pain, this isn't pride, stubbornness or scientific ignorance – this stuff is borne out of trauma.

And yet as I said before, all games of legitimacy are disablist games. The more we play into the idea of this fixed physical/ psychological binary, the more mental health stigma can be used to hurt everyone living with chronic subjective symptoms.

This stuff also promotes a culture which makes it difficult for people with pain conditions to recognise and seek help for mental ill health, as well as denying us potential avenues of pain management. We need to be able to discover that fussing a dog, painting our nails or watching the falling blossom eases our pain without any sense that this throws the reality of our experience into doubt.



Image descriptions and credits:

The first image is the black and white Blogging Against Disablism Day logo. A banner across the top reads "Blogging Against Disablism" below which is a 5 x 4 grid. In each square is a stick person. The twenty stick people include one wheelchair-using stick person and one stick-person using a tool which might be interpreted as a white cane or walking cane.

The second image is a cartoon pill pot containing green and white capsules which also appear to be tiny kittens. A label on the pot reads "If you can't make your won neurotransmitters, store-bought is fine."

This image is entilted "Purrozac", is the work of Megan Fabbri and was originally found on her tumblr. Apparently you can buy items of  apparel and accessories with this image on via Redbubble


The third image is a photograph of a bright green sign with white writing on the mesh wall of what might be carpark. The sign features a stick person ascending the stairs above which reads "Burn calories, not electricity. Underheath the illustration it reads, "Take the stairs!" and in much smaller writing, "Walking up the stairs just two minutes a day helps prevent weight gain. It also helps the environment."

This photograph was taken by Ludovic Bertron, was found on Wikimedia and is used under a Creative Commons license.

The forth image is a photograph portrait of a creamy-coloured alpaca, who is yawning and showing its impressive teeth. The background is rather blurred but suggests a field on a sunny day.

This photoraph was taking by Rob Faulkner, was found on Flickr and is used under a Creative Commons license.

The myth of prejudice, fear and ignorance.

Audio for this blog post is here:

I grew up with the idea that at the origin of all prejudice was ignorance and the fear of difference. Something like,

Those people look different, they act different, I don't understand them and so I am afraid!

It is natural to fear strangers, people would say, but as civilised educated people who know we have nothing to fear, we overcome it. People who fail at this and hate people who don't look, dress or behave like themselves are simply ignorant and more easily afraid.

I had some doubts about this even as a child because as a British white non-disabled child, I was not in the slightest bit afraid of people of colour, people with foreign accents or disabled people. I met people at school – a family of Bangladeshi sisters with albinism, a teacher with cerebral palsy - who looked, dressed, walked and/ or talked very differently from anyone I had ever seen before, even on television or in books. I didn't feel afraid of them in any way. Nobody did.

Meanwhile, the children I saw picking on their black, Asian, fat, skinny or bespectacled classmates did not seem to be afraid, they did not lack information about the children they bullied, nor had they missed out on any of the lessons about tolerance than I had received.

And yet the idea that prejudice was a natural impulse we must learn to overcome held a rather romantic message; for example, as a white person who felt no animosity towards non-white people, I must be a particularly good person. I watched movies where characters who looked a bit like me – although admittedly usually men – were able to rescue groups of black, Asian, Native American or Jewish people from their white or gentile oppressors, occasionally even from one another. In such stories, the villains usually looked a little like me, but the heroes looked and thought like me. These days, there are even versions of this movie, such as Avatar, John Carter and Game of Thrones, where a white hero saves an entirely fictional, fantastic non-white people because this is the way it works.

The idea of a world divided into the good guys, the bad guys, and the helplessly haplessly oppressed in need of my rescue appealed to my childish mind. It was an idea that gave me power.

Every now and again, a disabled friend will be shouted at in the street. Very often (although not always) the assailant is drunk in the middle of the day. Usually, the words shouted are about benefits, accusing the disabled person of being a scrounger, lazy, faking or some variation on this theme.

The victim will post about this experience on Twitter or Facebook. Folks are entirely sympathetic, but there are almost always comments along these lines:

“People just don't understand.”

“People believe everything they read in the papers.”

“People need to be educated about invisible disabilities.”
"People are afraid of what they don't understand."

“People need to spend a day in a wheelchair and see what it feels like.”

“People fear us because disability reminds them of their own mortality.” (Really.)

Street harassment of disabled people has risen steeply in the UK since the Welfare Reform Act of 2011. Political rhetoric sought to justify removing benefits from thousands of people with the idea that a whole load of people were either pretending to be disabled or at least exaggerating their conditions for cash. Hate crime and political rhetoric are undeniably connected.

But this is not because a bully on the street has come to the conclusion that the next person he sees in a wheelchair almost certainly doesn't need it. Nor does a bully look at a passing wheelchair user and feel a cool chill of existential angst as he realises that one day his own beleaguered body will fail and die.

A bully sees a disabled person and he sees a mark. He sees someone who appears physically vulnerable and socially isolated (folk rarely have these experiences in company). All that crap in the papers about scroungers doesn't give this guy a motive to abuse us; it gives him permission. People who shout at us in the street almost certainly have a lot of fear in their lives. But they don't need to be shown stats about benefit fraud. Their fear has nothing to do with us.

In the aftermath of the EU referendum, there was a massive increase in racist and homophobic hate crime in the UK. Nobody became more ignorant and these crimes were not being carried out by people - like EU migrants resident in the UK - who suddenly had something to fear. As a Brit, one of the most painful aspects of the unfortunate US election result was knowing that the same and worse was about to happen over there. Not that the election result made people more racist or homophobic (and the rest), but it made them believe that prejudiced sentiments were more socially acceptable to express in public. This perception literally shifted over night.

This is because prejudice is primarily about power.

We have a limited capacity to know and understand all those who are different from us but such knowledge and understanding are not necessary for respect and compassion. We know that all other people are as human as we are, that they have their strengths and weakness, loves and hates, fears and their desires and that members of any given group – even one brought together by a shared political belief – are not all the same. We know this but applying this at all times is a challenge.

Complaints about “people who...” do annoying, hypocritical or awkward things are common conversational currency – folk unite against a common outsider, however superficially they are defined. I enjoy the BBC TV show Room 101 where celebrity guests talk about their pet hates (rather reduced from Orwell's original), which are very often “people who...”. It's fun and funny because it is playing with this power; part of the joke is to ridicule a certain kind of person but the other part of the joke is the righteous indignation of the celebrity guest about a rather petty subject. It is a safe way for someone to say to a crowd, “Let's wipe people who eat noisily in the cinema from the face of the Earth!” and for that crowd to cheer their assent, united in their faux-loathing. And anyone present who knows that they eat noisily in the cinema can laugh along (or rustle their toffee-wrappers) and has absolutely nothing to fear.

Only usually, we're not joking. Sometimes we're half-joking, but other times we enjoy our righteous indignation with a totally straight face. Sometimes we complain about people who have done or do something wrong - rude, hurtful or harmful - but very often not.

When I first heard discussions about people wearing pyjamas at the supermarket, even I had a taste of smugness about the whole thing. Most days I struggle to get dressed, but only a medical emergency would draw me out of my home in my pyjamas. And thus I had a moment where I enjoyed a warm glow of superiority over people who shop in their sleepwear. Am I offended by this behaviour? Not one iota, but it made me feel good to think that I have risen above those uncouth wastrels by rarely ever leaving the house.

Now that's an ugly confession. We're not supposed to show our pleasure in feeling superior to other people – we're not supposed to admit to a world-view where some people are better than others. So instead we pretend to ourselves and others that we have other motives. It's a scandal! It's very disrespectful! And then we can build on this using our rich arsenal of cultural prejudices.

Okay, so many of the discussions about pyjamas in supermarkets had some humour mixed in, but not nearly enough. Very quickly you could see and hear folk reaching for sexism (this is about women shopping in their pyjamas, women breaking the rules!), fatphobia (these are probably fat and lazy women!), sexism against mothers in particular (these women set a dreadful example to their children!) and social class (these fat crap mothers are undoubtedly chav scum!).

When this January, one Tesco shopper published a picture of two women wearing sleepwear in a store on the Tesco Facebook page, the subjects of that photograph later said they felt they had been targeted as travellers. That's very likely the case; prejudice against travellers is rife and it would have provided yet another reason for some twerp to feel superior to them.

None of this is about the question of whether wearing sleepwear in a supermarket is disrespectful to the people who work there – a question worth asking, but hardly worthy of national debate. This is about taking pleasure in passing judgement on folk who are seen to have transgressed.

So let's imagine if Philip Hammond, our Chancellor of the Exchequer, was seen shopping in the supermarket in his pyjamas. We could criticise his arrogance, but we'd struggle to find much to say besides that. Being very powerful and a millionaire doesn't mean (I hope) that you or I could not consider ourselves Hammond's moral superior, we just don't have the language to back that up. We don't have the language to bring a rich straight cisgender gentile non-disabled white man down without casting aspersions on one of those identities. This is why even someone who is as morally repugnant and personally tragic as Donald Trump is mocked as having small hands or a small penis (not manly), drawn kissing Putin (not straight) or described as mentally ill (not non-disabled).

The pyjamas thing may seem like a trivial example, but when the aforementioned Tesco shopper posted that picture of two traveller women wearing sleepwear in a store on the Tesco Facebook page, he asked the supermarket to stop serving “such people”, adding that, “It's bloody disgusting!”

By which he meant, “I feel so superior to these people that I think I might single-handedly stop them being able to use a supermarket at all. It's bloody amazing!”

But that doesn't mean he wasn't genuinely angry about it. The anger that accompanies righteous indignation is absolutely real. I'm sure this chap felt that he was trying to correct some great wrong in the world and that his actions were public-spirited. He's probably a perfectly nice bloke the rest of the time and may well regret a deed which took just a few moments of excitement.

This is a big problem. We would like people to be on one side of this or the other; good guys and bad guys. Not just because it's simple, but because you and I can be on the right side. As I say, it's a romantic idea, and I believe it is more romantic the more detached you are from the realities of prejudice (which, as a young non-disabled girl who imagined she could grow up to be Indiana Jones, I once was).

We are very social animals and we are constantly concerned with our place around other people. We all have access to a variety of strategies for interacting successfully with other human beings, including very nice things - like sharing our resources, making ourselves useful, making others feel good – then mutual self-interest and the exertion of power; deceiving folk, threatening folk, undermining folk etc.. There are also strategies we employ not as individuals, but as groups. Groups of people bond over common causes and goals, shared experiences, shared jokes, but also belittling, hating and fearing outsiders. Human beings are so very social that we far surpass all other animals in our capacity for destruction and cruelty - but only when our friends are looking on.

Like other primates and many other mammals, we have access to all these strategies, and – when successful, however fleetingly – all of these things feel good. Obviously not all of us use all of them. We make choices based not only on what we've got (if you're very small, physical intimidation may not be your thing), but also on what makes us feel comfortable and good about ourselves.

But just as almost everybody will have felt a violent impulse from time to time, almost all of us have it in us to wish to exert power over others. And when we do so – especially when we're angry or insecure (because fear does play a role in this), it is easy to slip into the patterns our culture has dictated. On the rare occasion I feel a real loathing for someone, I find myself thinking of really insulting and often amusing ways to describe their physical appearance. This despite the fact about half of everything I've ever written might be vaguely summarised as “Don't judge people by their appearance.”

Debbie Cameron wrote recently about the tendency for egalitarian folk to pull apart the grammar and spelling of bigots. I understand and share this impulse; it's funny and satisfying, but it reinforces some of the very cultural hierarchies we are attempting to dismantle. There's a lot of this sort of thing within egalitarian politics, where folks who wish to end prejudice of all kinds nevertheless employ prejudicial language (most often disablist slurs) to insult their political enemies.

This is a point we keep missing again and again. I think folk are afraid of this truth partly because it is unflattering to almost all of us. But mainly, I think, because it makes bigoted behaviour even scarier when you understand that folk take pleasure in placing others as inferior; people and groups enjoy feeling powerful. People and groups enjoy exerting power.

There are other things I want to write about power and prejudice, but I will conclude this post with a very positive example of how this stuff can get better.

Among straight people in my social circle, the short ten years between Civil Partnership and same sex marriage revolutionised attitudes towards LGBTQ+ people (even though trans* people cannot be said to have full marriage equality even now). A wedding is an occasion of collective joy, usually involving many more people that just the brides and grooms. It is a really big deal to refuse a wedding invitation, whether it is for your only son, an old college friend or your great-niece twice removed – people notice, people know about it, people wonder how anyone can be so pig-headed. It is a really big deal to put a dampener on a wedding – not just for the couple but for any member of a wedding party – by making foul jokes about it or insisting it shouldn't be allowed. Even if you are so far removed from things that it's just your colleague that's the mother-of-a-bride, you are socially obliged to smile and coo at her new hat, and afterwards look at the photos and agree that the couple look incredibly beautiful and happy. Anything else is a potential bridge-burner.

Marriage was not a priority for all LGBTQ+ people – some folk object to the whole institution - but it caused the ground to shift. Straight people got to truly celebrate same-sex relationships, to take them seriously (no more of this “Johnny's special friend” to mean Johnny's spouse), to associate these relationships with the formation of family and the consumption of cake, while homophobes increasingly looked like killjoys and bigots. This did not happen overnight and it was not magic – we've not nearly begun to see the end of homophobia, transphobia and the rest. But I've had conversations with folk since 2014 which would have been inconceivable in 2004 and vice versa, because queer people started getting married. 

This happened not merely because people's minds were changed by reasonable argument (although that's part of this), but because of both positive and negative social pressure; it's nice to be participate in other people's good news, fewer people were going to laugh at those jokes or nod sagely at those bigoted remarks and more people were prepared to object. All this can work, not just to silence increasingly unpopular views, but to change people's minds, to knock the wind out of the sails of their prejudice and bring them around.

People will hold onto prejudice when it gives them power. Remove that power, all of it, and folks do let go. 

Should David Cameron be Sectioned?

There's a change.org petition calling for David Cameron to be detained under Section 2 of the Mental Health Act (the petition isn't that specific; the authors know nothing about mental health so they've just said he should be sectioned). The petition lays out a case as to why Cameron would qualify:

1. David Cameron MP appears to think he is Jesus Christ, and compares himself with Jesus

Cameron hasn't said he is Jesus. He said that Jesus invented the Big Society and that he, David Cameron is carrying on his work. It is a pompous and ridiculous thing to say, especially as the Big Society is whatever Conservative politicians say it is - mostly volunteers stepping up to replace essential services that have lost government funding and Food Banks, the need for which barely existed before they came into power.

However, John Lennon compared his fame to that of Jesus Christ. In one song, he claimed to be a Walrus. Extreme arrogance is not the same thing as a Messiah Complex.

Meanwhile, even sincerely believing oneself to be Jesus Christ is not itself grounds for sectioning.  On a recent television programme, Ian Hislop interviewed a perfectly sane and pleasant man who believes he is King Arthur.  It is possible for people to believe incredibly unlikely things about themselves and the world around them without even being unwell.  Eccentric, for sure. Factually misguided, almost certainly. But as a generality, unless there is considerable personal distress, there is no illness.

The argument continues:

2. He does this despite doing the opposite of what Jesus is recorded to have done, so David Cameron is clearly delusional.

By this thinking, every professed Christian who is homophobic, smacks their kids, accumulates massive wealth or in any way treats other people in ways they themselves would not like to be treated, could be delusional. Only they're not. This is just a mixture of misinterpretation and common or garden hypocrisy. Many if not most of us profess ethical beliefs we sometimes fail to follow.

In some ways, this is the opposite to mental ill health. Some mental illnesses are characterised by a person having beliefs they find impossible to compromise on. Sometimes, it is not the belief that is the problem (e.g washing hands helps guard against infection) but the inability to compromise on that belief to any degree.

3. He refuses to listen to the vast majority of the country, instead pretending everything is fine and refusing to explain himself, instead making idiotic ramblings and carrying out dangerous actions whilst pretending nothing is wrong

He refuses, he pretends. He is not oblivious - he chooses to ignore the people who, as Prime Minister, he is supposed to serve. This is not a sign of ill health, just a sign of a poor governance, ignorance, arrogance and selfishness. David Cameron is behaving very badly. It is possible to do that in perfectly good mental health.

4. He has already harmed thousands. He is a danger to himself and others.

There's no evidence that David Cameron is any danger to himself (his immortal soul notwithstanding). There's no evidence that David Cameron is a direct danger to others. There is no evidence of violence towards others. He has made decisions which have harmed people, even led to deaths, but very indirectly; he has spearheaded austerity measures which have put already very vulnerable people in increasingly vulnerable positions. He is responsible for that.

But this is the point; someone who is not in control of themselves will lash out and could harm people fairly randomly. They have diminished responsibility. Cameron is in control. He is surrounded by advisers and he sits through parliamentary debates where the consequences of his actions are discussed at length. He knows full well what he's doing and chooses to do it anyway.

Other arguments set forth by supporters of the petition include that David Cameron is a psychopath. Psychopathy is a controversial and complex area, but there is some evidence that Cameron exhibits some of the characteristics you might associate with this condition.  However, there are two things to be said about this.

The first is that Cameron is part of a government who collectively exhibit these traits. He is part of a very small but very powerful cultural bubble where it is normal behaviour to dismiss the suffering of others (particularly groups which represent a convenient scapegoat) and to line one's own pockets whilst professing to have the country's best interests at heart. It is impossible to tell whether Cameron would behave as badly in a context where the people around him weren't behaving this way, and giving him permission to do likewise.

Meanwhile, psychopathy, if it can be said to exist, is in the nature of a person and thus untreatable. If someone has not committed a crime, it becomes legally very tricky to detain someone for treatment (Section 3 of the Mental Health Act) when their condition cannot be treated.

I don't need to say, of course, that the idea of a petition to section someone is, if we take it seriously, absolutely terrifying. In days of yore, it was quite easy for wealthy men to get troublesome wives and daughters diagnosed with a serious mental illness and shuffled out of the way into institutions for the rest of their lives. In the mid-twentieth century, it was not uncommon to find people who merely deviated from the general population in some slight way - gay men, sexually active unmarried women, for example - put away and subject to dangerous and damaging treatments for little more than the failure to conform.

Do we really want to imagine a world where it would be possible to persuade doctors to detain and medicate people by a popular vote?  Does that even work as a joke?

So what can this petition achieve? Well, it has already has several effects which one is free to witness both on the petition site and elsewhere in social media :

• It has caused a great deal of amusement at the expense of people with mental illness. Despite the earnest tone of the petition, we shouldn't take this seriously, because it's just a laugh! Mental illness is so funny!
• It has reaffirmed our cultural connection between mental ill health and bad behaviour; David Cameron is bad, therefore he must be mad. The petition states, "This is not an attack on those with mental illness" but saying a thing does not make it so. 
• It has reaffirmed our cultural belief that mental illness is actually worse than evil. The fact that Cameron has overseen so much suffering in the country is one thing, but the reason he ought to be removed from power is because he is mentally unwell. 
• It has promoted ignorance of what mental illness is and how the Mental Health Act works. 

So well done to everyone. And people argue e-petitions are a waste of time. 

My Top 10 Complaints About Housing in the UK

I know - riveting! But this is something that, one way or another, effects most people I know under about 45. The effects vary greatly and I know that I am extremely lucky, an unlucky kind of way; there are folks I know who are far more securely stuck in unhappy housing situations or worse, teetering on the precipice of homelessness.

Anyway, here's why I think we're getting housing wrong in the UK:


10. It's too cheap to own a second home and leave it empty.

Second home-ownership is fairly ruinous to rural and coastal communities, pricing local people, on local wages, out of the housing market while flats and houses remain unoccupied most of the year. On the day of the 2011 Census, 29,000 residential properties in Cornwall - one of our poorest counties - stood empty.

It's not immoral for rich people to own second homes - I live between two homes, neither of which I own, but I can see the advantages of having places to live in two very different places, just as I can see the advantage in having a robot butler or more than three pairs of shoes. But what cannot be right at all is that tax law should make it cheaper to run a second home than it costs to run the first, through discounted council tax. At the very least, second-home owners should be paying full whack to support any community they own property in, given that their part time presence is unlikely to be an unmitigated force for local good.

On the same score, although MPs represent a small minority of second-home owners, they need to do much better (especially as so many have spoken of what a luxury it is for a poor person to have a second bedroom so their kids can stay over at the weekend). For one thing, any MP who fiddles their expenses to any extent needs to be fired, just like you would in a regular job. But if the tax-payer is to foot the bill for MP's second homes, this should be funded allowances according to need rather like housing benefit, e.g. a married MP with one child only needs a two bedroom property. If they want something bigger for their own comfort, they really can afford to pay for it themselves.


9. People enjoy living in expensive houses that they couldn't afford to live in if they didn't already own them.

There's house prices which vary, but fundamentally a house is only worth the cost of a similar house. If I owned a house that cost £150K, it wouldn't matter (very much) whether the price rose to £200K or dropped to £100K; selling that house would only generate enough money to buy another similar house in a similar area. I know it gets a little more complicated than that, but fundamentally.

The trouble is that people enjoy the fact that they bought their house for £3.50 thirty years ago and suddenly it's worth more money than they could ever have afforded if they didn't already own it - more money than their own kids, if they work in similar jobs, could ever dream of earning. I knew people who charted how much their house was worth during the boom as if this was real material wealth they were accumulating. High-rent prices mean that there are a lot of very wealthy landlords who didn't know a thing about property ten years ago. And the people who have benefited most tend to be of a generation who are also most likely to use their vote. They believe that they worked hard to pay off their mortgage (which they probably did, but everyone does), and if younger people can't afford to buy, that's their look out.

These people do not want to see the price of their houses fall, nor do they want their tenants paying any less rent. Yet elsewhere, when the recession hit, property prices fell and everyone survived in. We should stop seeing a property slump as the disaster to be avoided at all costs - apart from anything else, one of those costs could be a far more massive slump than would have happened otherwise.

8. We're not building enough of the right kind of housing (I)

In the UK, we're building very old-fashioned houses, with an only limited nod to environmental concerns. Outside house-building TV programs, the houses I see being built now look exactly like the houses I watched going up when I was a kid.  Where is our architectural imagination? Why aren't we using any of the technology that's developed in the past thirty years on mainstream development?

Part of this is about the environment (and for the most part, environmental materials are not expensive to use and generate work within the UK), but quite obviously, making homes where people will source most of their heat and light from the sun, ground, air or whatever, would lower the cost of living. It seems ridiculous that almost all the houses we're building now will still be predominantly reliant on fossil fuels, when those things are only going to get more and more expensive.


7. We're not building enough of the the right kind of housing (II)

Another problem with new builds is that every single one I've seen is on two storeys. They're also small, not just small rooms, but very narrow walkways, making them difficult to navigate with crutches, let alone a wheelchair.

While I don't want to sound pessimistic about old age and disability, with 1/5 of the population over 60, the number of people who struggle with stairs, at least to some extent, is an increasing minority. But there's nowhere for them to live. I know dozens of disabled people of all ages, who still live in houses with stairs, but remain on one floor or struggle - dangerously, and at detriment to their health - to get up and down stairs.

I understand that building up is much cheaper than building across, but I can't understand why there is no obligation on developers to build a small proportion of houses that are fully accessible, in the same way they're obliged to build a few that pass that vague criteria of affordability.  It's local councils who are going to have to foot the bill for adaptations on these inaccessible houses in the long run.


6. We're not building enough of the right kind of housing (III)

Most of the new building I see is happening on new estates away from existing towns and villages - not necessarily far away, but they require residents to drive to get to a shop or post-office, let alone schools, doctors and pre-existing community centres. They don't have any buildings apart from houses in them, so they don't encourage communal activities and the sort of community that builds up simply by having folk pop into the same shop every now and again, let alone a pub or Church. There are obligations on developers to plan around the prevention of crime, but nothing about encouraging or sustaining community.

By the same token, these affordable houses, whether owned or rented, are not where the work is. You're going to have to drive to get anywhere and that's going to mean that as a low-income worker, you're going to have much less money in your pocket at the end of the day. Many people cannot live near the places they work, but far fewer can afford to live in the middle of nowhere.


5. We're propping up the property market in the worst possible way.

This government cares that people will stop buying houses and all those middle-class home-owners (they're not all middle class, but the ones that matter are) will see their house prices drop. So how could you help first time buyers?  Perhaps providing its own low interest loans for first-time buyers, who've saved up a bit but are struggling to find a mortgage on a small flat or house?

Or you could guarantee a proportion of a loan up to £600,000 where the borrowers have only a 5% deposit. Because you want to help folk who have managed to save £30K to buy a £600K house - that's normal people, ordinary folk with ordinary aspirations, just needing a little leg up. And the tax-payer's money will be perfectly safe! And it's not going to artificially prop up property prices because people wouldn't be able to buy such expensive houses otherwise!

Urgh. I really don't think the government should be in the business of helping people buy property at a time when many people don't have enough to eat. But if they chose to, it should surely be low-waged first-time buyers with modest aspirations.


4. Government is afraid to further regulate, let alone compete with, private landlords.

Rent is way too high.  Rents are too high for working people who earn too much to claim benefits, but let's talk about those who can't or don't.

Much emphasis has been placed on how much money in spent on Housing Benefit (now Local Housing Allowance) with few politicians considering why this bill is so big. The sum you get is based on the cost of the smallest accommodation you could live in, in the 30th percentile of the local rental market. So for example, a single person my age where I stay in Surrey would be entitled to £346 a month, based on a room in shared accommodation. Only that's based on the 30th percentile across a region; round here, the going rate for a room is more like £500-600 a month.

Most people are either already renting somewhere or paying a mortgage when their income drops to a level where they need the extra help. Moving can cost many hundreds of pounds - people can't just up and leave (away from where the work is, away from their communities, their kids' schools etc.) because they're unemployed this month. By the time a situation reveals itself to be long-term, there's less money to make a move with. Meanwhile, if you're disabled, you don't get any extra because you need an accessible flat, or room for a wheelchair or other equipment.

The bill to the tax-payer has nothing to do with the choices made by benefit recipients. It's all about landlords - not a bunch of villains necessarily, but folk who will pragmatically charge as much as they can. If your rent goes up, you have to move or pay, and most people can't afford to move.

This is why, in 2013, we're needing food banks and Red Cross Parcels. People on low incomes (including some who are not even entitled to benefits) are spending most of their money on keeping a roof over their head and finding there's not enough left to eat.

The idea that cutting benefits will help control the rental market is bullshit. If, as taxpayers, we can't afford to pay the rent of our very poorest people, we need to control what they're allowed to be charged. Or better yet, compete with the landlords:


3. We desperately need more social housing.

Both sets of my grandparents lived in council housing before they went on to buy their own homes. They were working people and there was no shame or stigma. In fact, the council house Kelly grandparents moved into (Granny showed me on Google Streetview) was a central-heated semi-detached palace compared to the tiny terrace houses they both grew up in. They had fought and won a war, they aspired for a better life than their parents' generation and that council house was the first step on that journey.

These days, attitudes towards social housing are completely different. Many people have the idea that if you live in a council flat, you live rent-free (you might do, but only if you're out of work and poor besides). Council housing is highly stigmatised, some people don't want to live near it and many people understand the word chav as standing for council-housed and violent.

Meanwhile, folks are desperate for social housing, there are 1.7 million people waiting for social housing in England (about 3.5% of the population), let alone the numbers who need urgent transfers to non-existent smaller housing because of the Bedroom Tax (there's even talk of demolishing three-bedroom council housing that tenants can no longer afford).

We desperately need more social housing. We need to re-embrace social housing as a necessary facility that anyone might make use of if they need to (much like public transport. Only, you know, more like public transport ought to be.)


2. The Benefit Cap

When they talked about capping benefits to £25K a year a household - once they discounted Disability Living Allowance from the calculation - I thought, "Well that's a stupid crowd-pleaser, but there aren't going to be many families effected by that. £25K is a lot of money."

Only, it's not, when it's fairly easy to pay more than half that much out in rent. Frances Ryan's coverage of a recent (failed) High Court appeal by a group of women escaping domestic violence demonstrates what a mess we are in. Yes, it is a bit ridiculous that someone who is out of work should be getting more than an average salary (which, being the mean average, is more than most salaries).

However, it is even more ridiculous that someone could be having £25K income and still have no money to spend after food, bills and most importantly rent. And until we sought out that moral scandal, we need to cough up the extra in order to keep children fed and clothed.


1. The Bedroom Tax.

The Bedroom Tax is a policy whereby people in social housing who are perceived as having a spare room must now pay a weekly fine for the privilege. The "spare room" could belong to an autistic girl struggling with puberty who the government thinks should share with her boisterous six year old sister. It might be used by children who only visit on the weekend - its presence being a condition that the parent is allowed to have their kids overnight. It might be used by adult children who are away at university or in the army and do need that place to return to. It may be used by disabled people to store equipment - a wheelchair, hoist etc - or as a bedroom for one half of a couple to retreat to if pain, spasms and other symptoms make it impossible to sleep comfortably together.

Or it might be a spare room where nobody regularly sleeps, but which is part of the flat the occupants have lived in for the last forty years. Part of the home the occupants were placed in by the council.

One inevitable effect of the Bedroom Tax is to force people to move away from their work and employment prospects, families and communities. But mostly, there are no smaller places to move to, so it's just making poor people poorer. A third of council tenants are now in rent arrears and many are now becoming homeless.

There are no words for the damage this is causing, both to individuals, families, communities and society as a whole.

The first rule of any government policy relating to housing in any way?

Don't actively increase homelessness.

Blogging Against Disablism 2013: Blamelessness

The first duty of a disabled person is to be blameless.

In the Ipswich Star last week, a lady called Sarah Ashford spoke about the terrible situation the UK government's Bedroom Tax has placed her in;

“It’s a vicious attack on the most vulnerable people in society, especially somebody like me who didn’t have a choice to be born disabled. I was a breech birth back in 1964. I should’ve been born by caesarean and I should’ve been a normal baby.”

It's not in any way Ashford's fault that she is forced to speak like this, invoking the events of fifty years ago to prove that she is not to blame for her impairment. So much mainstream discussion of disability - especially the effects of austerity cuts - hinges on this language, this need to demonstrate that the people effected are worthy of charitable treatment. Words like innocent, genuine and victims pepper even the language of some disabled activists, although the implication is quite clear: there are those of us who are innocent victims of circumstance and there are those who brought misfortune upon themselves.

..........

Hideous! A pale-skinned  foot with
a heavily bandaged big toe.

I'm just finishing a second course of antibiotics for gruesomely infected toe. It's not painful, but it's been disruptive and draining and as of writing, it is still infected. Before the cause was established, I was variously asked whether

• I had cut my toe nails too short.
• I had let my toe nails grow too long.
• I hadn't rinsed my toes when washing.
• I hadn't dried my toes after washing.
• I had let my feet get too hot.
• I had let my feet get too cold.

Or, most ironically, given my circumstances,

• I had been walking about in impractical ill-fitting high-heeled shoes. 

Some of these suggestions were made by family, others by medical professionals. I was so relieved when finally I saw a podiatrist, who explained in CSI-style detail that I had badly stubbed my toe (she could tell the precise angle it had happened at and everything). 

It's ridiculous I should feel such relief.  Any other cause would have been just as accidental. I struggle with washing, drying and maintaining a stable temperature, and poor co-ordination makes my nail-cutting decidedly inexpert. The podiatrist said this long winter has brought about something of a chilblain epidemic. This stuff happens to people.

But I know my responsibilities. I have to be trying my best, to be as healthy as possible. I have to do all the right things, and be seen to be doing all the right things, to avoid relapse, infection or complication. So none of it is ever my fault. Other people can afford to make themselves vulnerable in small unwitting ways, but not me. Any infections I get will be despite my very best efforts.

Other people have it even worse. Some years ago, I was awkwardly introduced to a friend of a friend who had my condition, and believed that she was improving with the help of some extremely expensive, extremely dubious alternative therapy. Her parents were paying ten thousands pounds a year - much more than my annual income - on these bizarre potions from a man who had convinced her that she was now cured but she had to keep taking the potion and seeing him regularly because her body hadn't let go of all her symptoms (or, in fact, any of them).

She was a very difficult person to speak to, as she thought everyone should be doing the same. 

She said, "You've always got to be trying something to get better. Otherwise, you've given up."

.....................

We've developed a morality around health and healthy living to rival previous generations' interest in other people's sex lives. Food, which should be all about fuel, nutrition, social activity and sensual pleasure, has acquired the language of sinfulness and virtue; this devilish chocolate cake, this goody-two-shoes salad. People sometimes boast about doing physical exercise they actually hate, in much the same way a Medieval penitent might have celebrated how very very itchy his hair shirt was.

The wages of sin are not only death, but illness and disability in the run-up.

There's a get-out clause, of course, and that's if you can stay healthy, looking healthy. You may still boast of your efforts to steer clear of those satanic carbs and to practice Zumba like Saint Francis of Assisi, but as long as you remain non-disabled and slim enough, it's all hypothetical. It's all a bit of a joke really if you eat nothing but pizza and cigarette smoke. Only if you're disabled or fat is an adult likely to get earnest advice about diet, exercise, drugs and getting enough fresh air and sunshine. And since some of that advice will contradict (carrots are a panacea; carrots are a poison), we can never get it right.

It's particularly hard for disabled people to make healthy choices, let alone be seen to make healthy choices. Pain and distress can make avoiding drink, cigarettes and drugs more difficult. Many prescription drugs are fairly bad for you, especially long term; it's just that in the balance, their effects are preferable than the alternative. Digestive problems, poor care, poverty, allergies and intolerances mean that disabled people often have diminished choices about what they eat.  Poor mobility and metabolic problems mean disabled people have less choice how much weight they carry. Physical impairment, as well as poor access to gyms and swimming pools, social anxiety and the reasonable fear of exposing one's body to a world that has declared it substandard, are all barriers to exercise.

Yet despite all this, we are under the greatest pressure to try. To try and do the right things. To be seen to be doing the right things.

...............

Obesity is a very popular subject for moral panic. It's supposedly about gluttony, an old-fashioned sin and one we're all vulnerable to, because we all have to eat and most of us enjoy it. It's also about beauty standards, or their opposite and the thrilling opportunity - so rare these days - to judge others by their appearance. And then it is about health; people not looking after their own health, which is, apparently, a sin against us all.

This, despite the fact that half of us are overweight, the population overall continues to live longer and healthier lives.

In her post Chronic Illness, Diet & Food, Em describes about how, faced with her particular collection of complex physical and mental health issues, her doctors prefer to focus on her weight:

"I've hit a point where I'm too tired to fight it any more. The crushing pressure has become too much and given my other health issues it's just too much extra for me to keep battling on against. I have grudgingly agreed to see the local "Weight Management Services". Not because I want to lose weight but because I don't want to spend over half of every appointment I attend talking about my size."

We know our responsibilities. We have to be seen to be trying our best. We have to be blameless.

.............

The focus on the innocence or responsibility of disabled people removes the need to consider the physical, social and political barriers which set artificial limitations on our lives, above and beyond the problems our impairments cause. We are either individually responsible for our limitations, for our worklessness, for our difficulty getting up stairs or staying awake. Or we are the innocent victims of shocking and terrible events to be pitied, cried over during telethon evenings and forgotten about.

I think of this when people question our numbers. The World Health Organisation says we are one in seven. Both our Prime Minister and our Minister for Disabled People have both stated their intuitive disbelief about the number of people legitimately claiming disability benefits (much much less than one in seven). Last week, Ester McVey stated;

"Only three per cent of people are born with a disability, the rest acquire it through accident or illness, but people come out of it. Thanks to medical advances, bodies heal."

Only people who see impairment as an uncomplicated individual tragedy would be so anxious about the numbers. Because great personal tragedies, unthinkable, unsolvable, life-sucking tragedies - the type where you think, How do people go on? are thankfully quite rare. Every day bad luck life events? Really common. People fall and damage their back forever. People get an infection and never recover (hopefully not a toe infection!). People have bad experiences and are left with mental scars. People's own bodies and brains rebel against them. It sucks. Folk have to grieve. But then we try and get on with life.

And then we hit fresh barriers. The built environment, systems, prejudice, media representation and public attitudes. And the responsibility, ever to show ourselves to be innocent in all this.

Because it's never anyone else's fault if the world is built for strong legs, strong sight and hearing. It's not anyone's fault if someone is stared at, sometimes shouted at, whilst going about our daily business, vulnerable to abuse, discriminated against at every turn. It's not anyone's fault if we find that people like us are demonised in the press and in fiction, and that those messages slowly but surely sink in, changing the way in which we understand ourselves, forcing us to recount our medial histories and prove ourselves blameless.

These things are all tragic accidents.

Why you can't eat healthily on £1 a day

(Don't forget Blogging Against Disablism Day!)

Arguments about the absolute minimum amount of money people need to survive on should be confined to history, but have become tragically relevant in recent years. Benefit cuts threaten to push already poor people into dire straits. This is a scandal, but BBC news approaches this like an amusing lifestyle conundrum, publishing How little money can a person live on? and today, an article that really made me cross;

How to eat healthily on £1 a day

which should be titled How to survive on £1's worth of food a day - there's a lot more than £1 being spent on food, travel and cooking and there's little evidence of the healthily bit. For example, there's nowhere near the five daily 80g portions of fruit and veg recommended to by the World Health Organisation.

This kind of article angers me because it is about poverty as a hypothetical experience, being used for entertainment. There's no practical advice here, nor is there any discussion of why anyone should be in this position and what needs to be done about that. (See also, Pippa's Pretending To Be Poor)

I am not in poverty any more - I have a low income and am having to live with parents in my thirties, but I have eaten purple flowering broccoli in the last seven days, so I am definitely not poor. Nor have I ever been so poor that I was hungry. Poor people are poorer now than they used to be. Benefits have been cut, especially housing benefit and many disabled people are having to endure periods of extreme poverty whilst appealing bad decisions on Employment and Support Allowance.

As well as using the suffering of others as an entertaining thought experiment, there are really six massive problems with the idea of eating healthily on £1 a day:


1. Poor people cannot afford to waste food. 

All the meals listed include small portions of bulk buys - for example, 1/4 courgette which was bought as part of a six pack. You can't say you're eating on £1 a day, if you're spending £1.60 on courgettes and wasting 95% of what you bought. The Oh My God Dinner actually totals a bank-breaking £8.31 unless you

(a) share your meal with the rest of the street

(b) use up all the spare ingredients in other meals

Pasta is no problem, but eating six courgettes at a rate of a quarter a day? If there's one of you, there's guaranteed wastage. Otherwise, you need to be eating these tiny portions of courgette on a near daily basis.

Or it could be you

(c) happen to have all these bits and bobs at the back of your fridge. Which you don't. 

This latter point really frustrates me. I remember reading an article which described poverty stew and included a wilting leak and some scraps of prosciutto found at the back of the fridge. I had to look up what prosciutto was (back before I rose to the heights of purple flowering broccoli consumption). Anyone who is finding perishable surprises in their food cupboards either isn't poor or is extremely new to this business.

Very quickly, you learn to plan. You don't buy anything you're not going to eat. If you do one weekly shop, you eat or at least cook the fresh stuff at the beginning of the week, and live off tinned food or things you've cooked and frozen at the end of the week. You never face old vegetables because you ate everything when it was fresh.

The only time there are leftovers is when you made a mistake (which happens), someone gave you food unexpectedly or you've been too unwell to prepare or eat the things you planned to.


2. Poor people can't shop around like that.  

All the ingredients in the meals the journalist supposedly ate came from their cheapest supermarket source, with items from Asda, Tesco, Morrisons and Sainsbury's going into the same meal.  There may be areas within the big cities where all these places are all within walking distance, but poor people are unlikely to live in those places.

Folk living on the breadline are unlikely to have their own transport and any money they spend on bus fare is money they can't spend on food and other essentials. I'd guess that most people only have access to one supermarket. Most people don't have the time, money, physical or mental energy to perform the calculations and travel between different supermarkets, buying the cheapest option for each ingredient. That would render food shopping a  near full-time occupation.

I have never lived within walking distance (let's say a mile) of  one supermarket, and I've lived in three different towns (one big, one medium, one small) and three different villages (only one of which had a supermarket). On-line grocery shopping has made most sense, since it was first available, but you're not going to pay for deliveries from more than one shop.


3. Poor people can't always eat whatever happens to be available. 

I don't consider myself to have complex dietary needs, but I can't eat the white bread and biscuit diet proposed by the article. I need a very high fibre diet, and that's when I'm already on a metric tonne of prescription laxatives. Stephen would fare even worse, being outright allergic to dairy and eggs, and intolerant to wheat and garlic, among other things. Wealthy middle-class people can afford to eat fad diets based on the idea that their extra-special bodies can't digest this or that, but some bodies really can't.

Then you have diets based on religious taboos, ethical positions and food aversions. These are not to be underestimated; it is really a huge ask to expect people to eat foods that they consider disgusting. If they were stranded on a desert island (as opposed to the dessert island I spelled originally) and it was pork scratchings or death, folks would compromise.  But such fundamental compromises should be completely unnecessary - unthinkable - as a consequence of unemployment in the United Kingdom in the twenty-first century.


4. Poor people can't always cook. 

This isn't about the absence of skills - skills can be learnt and goodness knows there are enough television programs demonstrating how food can be prepared.  This is about the absence of energy or capacity through illness or impairment, the absence of time because of work or caring responsibilities and the absence of the tools and materials - hobs, an oven, a microwave, some surfaces to prepare food on, space to cook, pans, knives, chopping boards etc.. as well as everything you need to clean up afterwards.

There's also the cost of cooking in terms of gas or electric, which is another very tricky calculation - variations on jacket potato may be a very cheap, nutritious meal, but not so much if you have no microwave and have to put an aging electric oven on for an hour and a half every day.

There are many gadgets and gizmos which can help with frugal healthy eating, such as a slow cooker. But you need to be able to afford and have secure space for that stuff in the first place.


5. In reality, calories are cheap.  Healthy food isn't.

The real reason that you don't find people starving to death in 2013 UK is that calories are cheap. It's quite easy to get 2000 calories out of £1 worth of cheap cake, pastries, biscuits, sweets, crisps or peanuts without having to put down £8 on a meal and hope to use the leftovers with equal efficiency. This is why there's a correlation between poverty and both obesity and malnutrition (which can and frequently do go together); calories keep us alive, but not necessarily in very good health.


6. Nobody should ever have to live like this, ever! 

Are poor people part of society?  What do we want to do with them?  If poor people are going to be (a) in any position to improve their situation or (b) not end up costing the state in terms of poor health and crime, they need to be able to eat decently. They need the absolute minimal level of dignity that comes from having some choice about what they eat and not having to worry about going hungry. This is especially the case for children, but applies to absolutely everyone.

We're a country recovering from a recession, but we're still the seventh richest country in the world.  We measure extreme poverty on a global scale when a person has to live on less than $1 a day. We shouldn't be talking about people on our own shores living on £1 a day ($1.55) as if that's just a sign of our times.


[Edit: Funny Grrrl wrote a similar thing on MP Helen Goodman's attempt to live as some of her constituents were being forced to in Helen Goodman, class-privilege and unrealistic expectations.]