On Loss & Chronic Illness - Bargaining

Content Note: Refers to domestic abuse, disablist abuse, some mild swearing.
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:

In the face of loss, folk clutch at straws for something that will make everything okay, make deals with their gods, plead with their departing lover and so forth. Even after someone has died - especially if it's happened suddenly - their loved ones may run through a whole heap of scenarios where, if only one tiny detail had changed, if only they had personally picked up the phone or paid a random visit, the death could have been avoided. It's all too late, but the mind continues to try and negotiate an alternative deal.

I said in my post about denial that our disablist culture helps to keep people with chronic illness stuck along the process of coming to terms with loss, and this is especially the case with denial and bargaining.

We are encouraged to bargain for our health in the same way we're encouraged to keep an unflinching faith in the unlikely prospect of fast and full recovery. With chronic illness, it's difficult to engage even with conventional medicine without psychologically bargaining; believing that if you do the right thing, eat the right thing, take the right meds etc., then you will minimise what you've lost.

But this is chronic illness - by definition, conditions which can't be cured and don't usually go away by themselves (and if they do, they take ages). These illnesses tend to fluctuate and both relapse and remission can arrive either at random or due to events we have no control over, such as trauma, viruses or family stress.

Taking care of our health should never be about minimising a loss - that's simply not up to us - but rather maximising our chances of being as well, comfortable and happy as possible. When we feel like it. If we overdo it today, we're not breaking some cosmic deal; we don't deserve to feel like crap for the next week because we don't deserve any of it.

And that's something which is sometimes very hard to remember.

A significant part of what we lose when we become chronically ill is about identity and one of the worst psychological - and sometimes spiritual - effects of chronic illness is that it gets harder to believe that you are a good person.

Everyone wants to feel like they're a good person and most people find at least some sense of this in the things they do for others. Even if they don't spend their day saving small animals or lifting children out of poverty, many people's work is useful and helpful to someone else – people who genuinely feel their work is pointless have a problem. Then there are the roles we have within family, within friendships and communities; people feel good about looking after one another.

Whatever our level of capacity, people with chronic illness can do somewhat less than we'd like. Some of us can't do very much at all. The best intentions in the world can't give an elderly neighbour a lift to the hospital, babysit for an afternoon or simply show up and be with a friend whose world is crashing round their ears. Lower incomes limit our ability to throw money at other people's problems or give money to good causes. A low income plus low energy even limits our ability to make ethical or environmental choices as consumers; we can't necessarily afford to turn down the thermostat, buy Fair Trade undies or self-righteously abstain from seasonable sales when the things we need become briefly affordable.

Then there's the fact that what our culture holds up as especially virtuous is even more inaccessible than the quiet good of doing the best for the people and causes that matter to us. Ordinary people are always happy to put their hand in their pocket for a good cause, but to be seen to be good, you can't just ask around your kith and kin; you have to spend time, money and energy climbing mountains dressed as Spongebob Squarepants to raise just as much as you might have done rattling a tin*.

Beyond our diminished ability to do good and especially to be seen to do good, experience within a disablist society then gives us a hundred other reasons we can't be good people. Friends and family members quietly shuffle out of our lives, some employers behave absolutely hatefully, people make jibes or well-meaning but tactless comments and both professional and social invitations dry up.

In fiction, folks with chronic illness are at best innocent victims, abused, cheated on, heading off to Switzerland, the sweet but inconvenient relative who hampers a protagonist's journey. Otherwise we are serial killers or embittered tyrants, trying to control the world from a position of weakness and deformity; our illnesses are metaphorical and often fake.

And then we get onto politics. Campaigns against welfare and social care cuts are partly about money, but if you listen carefully, what you hear more than anything else, are protests of innocence. In order for what's been happening to us to be in any way fair and just, we'd have to be a complete bunch of bastards. I can say that casually, but it's very difficult not to internalise at least some of the crap we hear from politicians and in the media and in the wording of the letters and assessments.

So while there might be something natural about being less able to do stuff, needing greater support from others and thus struggling with feelings of inadequacy, this is a feeling enforced over and over again by capitalist disablist society.

Thus even after we've largely come to terms with ill health, I think a lot of us are still busy bargaining for our souls.

Of course, something people with chronic illness are pretty good at is suffering. Our culture frequently confuses suffering for real virtues like hard-work and patience - so much so that should one of us ever express the fear that they are not a good person, we may well be informed that, of course we're good - we've been through so much!

Suffering is not entirely unrelated to virtue. Some Catholics with chronic illness talk of offering up their suffering - they endure the pain and misery of illness so that they or dead loved ones won't have to spend so long in purgatory. It's not unreasonable to judge people favourably who have endured suffering without becoming embittered or angry with the world. Nelson Mandela was not a hero because he was imprisoned for 27 years, but the fact he wasn't overflowing with hatred towards the folks who put him there is an aspect of his heroic story (although perhaps an overplayed aspect among those who like to see heroes of anti-racism as supernaturally patient and peace-loving).

The goodness of those who suffer is about resistance; not giving into temptation, not being an arsehole about it, maintaining compassion for others and so on. But suffering itself doesn't make us good. Avoidable suffering is a complete waste of time and energy.

In my twenties, I used to think that a certain zealousness about ethical and environmental consumerism was fairly normal to my generation – not universal, but common. Then I noticed that even though we'd all grown up with a knowledge of climate change, animal welfare and workers rights, this preoccupation was unique to those friends with chronic illness. It wasn't like the others didn't care or weren't conscientiously engaged (although some weren't), but I didn't know any healthy people who did the sums about whether it was better to buy British tomatoes grown in heated greenhouses or Spanish tomatoes than needed no extra heat in their cultivation but had to be flown here from Spain.

If you set about trying to manifest your personal goodness as a consumer, you've lost before you start. All organisms consume – everything takes stuff from the environment and uses it in order to live. In the absence of tremendous physical energy, strength and anti-social tendencies, humans are forced to live around other humans and source food, shelter and warmth within the imperfect systems our species have created. Folks can do good when they are wealthy enough to experiment with the greenest new technologies - solar panels, electric cars, zero carbon homes etc. - or when they have the power to confront or change these systems.

Everything else is about minimising the tiny wee flicker of harm an individual has to contribute to the great fiery ball of harm our species is currently causing to one another and our habitat. And yet of course, as long as you're alive, you can always reduce your consumption a little bit further.

Take the thermostat. I have poor circulation and I don't move round much; I get cold and cold makes my pain worse. And I don't go out much at all, so in the winter I need to be in a heated home. For years, I was wearing four or five layers, plus hat and gloves - restricting my movement, using up my precious energy - in order to keep the thermostat as low as possible. But of course, it could have gone lower. I could have put on my coat and stay under the duvet all the time. It could have got colder and I wouldn't have come to great harm - I would have merely been less comfortable. I was suffering, but I was still managing to destroy the planet.

I became obsessed with toiletries – the plastic bottles; the bubbles and chemicals I was sending down the drain. At one point, for quite a while, I didn't use any cosmetic products apart from hand soap and toothpaste. I didn't smell – I bathed as regularly as I could and wore clean clothes, but I never felt clean and my hair looked awful all the time (some people don't need to wash their hair in order for it to look clean but some people really do). But toothpaste tubes - they're not recyclable, are they? I was still generating waste.

What I did spend money on was craft materials because I always intended to use them to make things for other people (and I did, a lot, but of course, I managed to accumulate a lot I hadn't used and felt guilty about that too). I've written before about my angst around stuff and the fear that the mere fact of having things I didn't desperately need was itself a symptom of excessive consumption. I'm not the only person I have seen that in and all my fellow travelers are chronically ill.

Being mature for his age and an extremely empathetic listener, younger Stephen prided himself on the word of praise he most often heard as a teenager and young man; he was a rock. He listened to the problems of friends, family and an abusive girlfriend, then he sought out other troubled people and listened to them too. He joined mental health chatrooms in order to listen to strangers rant and rave, express their violent thoughts towards themselves, sometimes others and occasionally himself. He was there to help people by listening, which was something he was very good at - he wasn't getting off on other people's misery. But when long and distressing conversations damaged his own health - when helping others caused him suffering - he felt he might not be such a bad person after all.

Having grown up (as I did) on a history syllabus awash with graphic images of genocide and torture (and not finding anything suspect about that), Stephen believed that there was virtue to be found in being witness to the suffering of others. Thus he sought out stories and videos of terrible things happening, as if he could absorb some of the pain. "I was already suffering," he says, "so it struck me that I could always take on a bit more."

These days, Stephen doesn't like to be called a rock because he says the thing people like about rocks is that they are unyielding and unfeeling; a rock isn't someone who can be hurt or exhausted by someone clinging onto it, standing on top of it or kicking it repeatedly.

I get this because of the dynamics of my own abusive marriage. There's a stereotype about victims of domestic violence that they have martyr personalities - that they somehow want to be hurt, so they can feel somehow ennobled by the suffering. This is nonsense, mostly because it portrays victims as people who are far more conscious of and in control of these situations than they usually are. However, I did think that putting up with the abuse somehow made me a less terrible person. Of course, the abuse made me feel like a terrible person, so that's kind of circular. But being able to forgive and forget (as I thought I was doing) and keep caring for someone who had hurt me made me feel like I was doing something good.

I guess it's all about guilt again. The things people do to try to avoid feeling guilty don't do any good to anyone. Often they make things worse; doing things for other people in order to ease your own pain can make it a lot harder to concentrate on what other people want and need. Guilt consumes energy which you could be spending on anything else - like looking after yourself. It is possible to care for other people without caring about oneself, but it is very much harder to do other people any good if we don't first take care of ourselves.

We're told as children not to compare ourselves to others, but when we live in a culture which tells us the opposite half a dozen times a day, we need to consciously resist the temptation - not just in terms of whether or not we are good people, but whether we are loveable, important, have adequate electronics and so forth.

According to the Bible, Jesus said,

"Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these."

What Jesus is saying here is dress to impress. Select your pyjamas for both style and comfort.

On a more serious if surreal note, you are something of a lily, dear reader. Earlier on, I said that many people find some sense of being a good person through work because most work benefits others in some way. Well, right now - although I'm writing this partly to organise my own thoughts - you are facilitating this effort, just by being there and reading this, making it worthwhile. You don't have to lift a finger, I might not know you at all, but I'm very grateful that you're there. You are taking a positive part in the universe.

Ajax looking after Stephen
(a black toy poodle sits on the legs of a handsome reclining
white man with dark hair and glasses)

If JC had met any, he might have also asked us to consider the poodles. When Stephen and I lived with my in-laws and their toy poodles, Cassie and Ajax, the six of us were a pack, each with our own role. Cassie and Ajax's principle role was to be looked after; to be fed, taken for walks, played with and let outside to toilet.

For much of the time, Stephen's or my role was also to be looked after and the dogs helped with that; if one of us was stuck in bed, they'd come to visit and sometimes sit with us a while. During such times, none of us were useful, except that we gave and received love. The dogs did and still provide company, structure and purpose to my in-laws' day. Mum and Dad W are both disabled pensioners but nevertheless busy people - it's not like they'd fade away without the dogs to keep them going. But the dogs are important.

Cassie looking after Stephen
(a black toy poodle sits on the legs of a handsome reclining
white man with dark hair and glasses)

The dogs also provide something very special to their human companions. A pet allows a person (with the capacity to look after it) the opportunity to give another living creature a really good life; to increase the sum of happiness in the world. Being someone to love is no bad thing. And almost all of us are that to some people, even if they don't live with and actively look after us.

There are some elements of loss associated with impairment which will never go away. Sometimes I get tearful when Bob Marley sings, "My feet is my only carriage" because I mourn a time when I used to walk everywhere and took that entirely for granted. I still fantasise about going for long walks without having consider wheelchair-suitable terrain. It's fine; I don't wake up each day resenting my incapacity to walk very far, but if I've not stopped pining now, I probably never will.

In the same way, the desire to do good and be useful are pretty basic human inclinations. I genuinely believe that - people fail all the time, prioritising other things or held back by some fear or other, but I think most people want to do good and be useful.

So relative powerlessness is always going to hurt. The important thing is to recognise that our supposed uselessness is very much exaggerated by the disablist world we live in. Everyone is obliged to do what they can and the contribution each individual makes is so personal and nuanced that it can't - and should never - be compared to that of others. If we are still involved in the lives of other people in some way - even in a very passive way - if we love others and let them know that - then we are doing what we can.

On Loss & Chronic Illness - Anger

Content warning for brief references to self-harm, domestic abuse and all variety of disablist nonsense.

I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:


The perfect management of a fluctuating chronic illness is impossible. So long as the precise nuances of your body and brain remain unseen, you will overdo it. You may sometimes be over-cautious and do less than you could. And you won't really know what you've done until it hurts a lot more.

Beyond this, you sometimes do too much because there's something you want to do, or get done, or because you're frustrated, angry or anxious and you can't stand to stay still with that feeling.

When I first began to realise this – that things would not improve just by pushing and pushing – I was filled me with rage towards myself. I would swear at and curse myself out loud. I was disgusted with a body which refused to co-operate. I injured myself and made half-hearted attempts on my life. It wasn't that I was sad or disappointed in myself; I was livid.

At this time, I began talking to the man who would become my first husband. This person carried a hell of lot of red flags, but having tricked myself into ridiculous hope, I no longer trusted my instincts. One of these red flags was the fact that this man in his mid-thirties was angry all the time at pretty much everything, even with a teenager he was talking to on-line. However, I felt crap about myself, and this anger made more sense than the kindness and support of my true friends; I figured they must be deceived about me, while he was not.



Our culture isn't great when it comes to extreme negative emotions like sadness or anxiety, but it's pretty atrocious when it comes to anger. For one thing, there is a profound social hierarchy in who is allowed to express anger. Rich white powerful men are allowed to shout at and mock their colleagues in public and yet remain in charge of us all. Another can physically assault his subordinate and maintain much of his public favour.

Women are taken much less seriously than men if they show anger and while many stereotypes about women of colour are about being submissive and demure, the first sign of anger can flip this on its head; the eager-to-please East Asian becomes the Dragon Lady, the submissive Muslim stereotype becomes a terrorist and so on. Our culture is particularly wary of angry black people, particularly black men. This makes sense in terms of our imperialist history; it's a good idea to be afraid of anger in people you're trying to control or crush.

Disabled people are another category who are not supposed to be angry except in very specific contexts: a young white man who has been physically injured during heroic activity (war, fire-fighting, police work etc.) is allowed to express anger if he channels it into successful rehabilitation. Almost anything else and you're heading into disabled villain territory.

This is one reason that I've struggled to write about anger and loss. Anger is a natural stage of grief and recovery from any kind of loss and trauma – it's okay for anyone to feel angry about their experiences and the injustice in the world. In fact, to be angry about the hurt one has experienced is often a first step in valuing oneself and one's safety.

For people with chronic illness the problems are fourfold:

1. You're not supposed to be angry. When people admire a sick person, they say, “They're really suffering, but they never complain!” Meanwhile, you're supposed to respond to those around you with gratitude that you're being looked after (even when they're not looking after you) – you're certainly not supposed to get angry with them. If you get angry, you might be left entirely on your own when you literally can't survive without help.
   
   There are some situations where showing the slightest frustration with someone who has power over your life – a medical professional, an employer you're negotiating access with, someone from the benefits agencies – can have you pigeon-holed as a trouble-maker. This is especially the case for people with mental ill health, who can even acquire new diagnostic labels for arguing with their doctors.


2. Competing with fear, anger might be the most exhausting emotional state to be in. Your body prepares for physical conflict, your heart races, your breathing becomes shallow, your muscles tense and blood is diverted from normally essential things like digesting food. Anger can make a healthy person feel pretty sick. For sick people, the physical tension of anger can cause a lasting increase in pain. It can cause gastrointestinal symptoms that go on for days. And while sadness drains energy like a hole in a bucket, anger pumps it out of you.


3. In chronic illness, anger often has no place to go. Sometimes, you're literally stuck in a room either with its source or completely alone, with no way of addressing or venting it. Sometimes it's impossible to even talk about it or write it down. Gobble gobble gobble.


4. As well as the anger associated with the multiple losses involved in chronic illness, we have plenty else to be angry about. Disablism, discrimination, poor access, crap from benefits agencies. Unhelpful, sometimes cruel remarks and behaviour from family and friends. Plus misdiagnosis, medical bureaucracy, abuse and negligence are immensely common – not because doctors are a bad bunch, but because having a chronic condition means we see dozens of them over the years and are bound to encounter the occasionally horror. Trouble is that horrific doctors can cause lasting damage. 

A particular trouble with disablism is that often we experience injustice which simultaneously insults us personally and denies our loss. When the DWP decides we can do things we can't, when folks express envy that we don't have to go to work and when politicians talk about encouraging us to do the right thing, they're not only implying dishonesty, laziness or other character flaws on our part, but they are denying the limitations we have and the things we've lost. For people with conditions that involve suffering, they are denying this suffering. This is one reason why, unhappily, a lot of disability politics has gone Tragedy Model over the last six years, with folks arguing for their basic rights, not on the grounds of the intrinsic equality of all people, but on the grounds of compassion.

A cousin was telling me about a colleague who had a condition a bit like mine, although much less severe – this lady was still in full time work, although it was an increasing struggle. My cousin had explained to his colleague about me and my medical history. He said, “I told her, it must have been so much easier for you. She's in her forties with a job, a couple of children and a mortgage, whereas you were only fifteen and didn't really have anything to lose.”

Thus I find my entire identity reduced to that of sick person – all I ever was or am or will be. This happens quite a lot. In hospitals and doctor's offices, I am a collection of symptoms. I've currently got my ESA form-filling file open (not for fun - I have a form to do); 6000 words about the intimate details of my daily life. And it has nothing about me in it, no whisper of who I am, what I care about or what I'm good at. 

In the media and the mouths of politicians, folk like me (especially those of us who have few formal qualifications and have never had a full-time job) are talked about as if we are blank people without interests, skills or experiences - either to be filed neatly out of the way (those who need the most help) or to be pressed, moulded and trained up into real coloured-in people (ordinary hard-working families).

The temptation is to respond to this stuff with protests of what might have been – the dominant Tragedy Model narrative; the way we are taught to tell our stories. My cousin's colleague wasn't going to lose her children and was unlikely to lose her job – things I had lost before I even had a punt at them. I might have had a glittering career, made a profound contribution to the world with whatever path I took, earned a fortune and been someone my cousin boasted about as opposed to someone whose story can be shared as an example of a non-life.

But that's a game I'm bound to lose. For one thing, it's nonsense;  I would have had a very ordinary life, working jobs I liked and jobs I didn't, with spells of unemployment in between. I know healthy people who travel through life clutching onto a narrative of what could have been if only they'd been in the right place at the right time, and it's both sad and deeply unbecoming – there's always the implication that such people are somehow better than the average-wage life they actually have, thus somehow better than their colleagues, their friends and neighbours and most certainly people like me.

It's also a story of disabled life which focuses on the contrast with the non-disabled life which never happened. And although I'm writing about loss, I am not prepared to escape the identity of sick useless person who would never have amounted to anything by signing up to be a non-disabled person trapped inside the life of a disabled person. 

I often see people with chronic illness on social media declare that illness destroyed or ruined their life, stole their youth or future - sometimes in the first person plural; our lives, our youths, our futures. I'm very lucky this didn't happen to me. Illness helped shape a life which was different to the one I had expected. This life features a degree of ongoing loss and frustration because I am a sick person living in a disablist world. 

When I was fifteen, I had a hell of a lot to lose and I lost a very great deal. But I'm far more upset now by what I'm losing as a thirty-five year old. I have friends and family I hardly see - right now my 92 year old Granny is in a bad way and I'm not well enough to visit. Weeks pass when I can't leave the house and there are all kinds of social and cultural events I can't join in with. I'd like to have a dog.

I have acquired talents, expertise and experience which I am only able to put to limited use. Right now, I don't fantasise about having more money, but I deeply envy people who have jobs that fulfil them and make them feel useful. I know full well – because I work hard myself – that no activity is universally pleasurable and fulfilling. But I envy the opportunity to spend more than a few hours, randomly distributed across the week, doing what I do well.

And this is okay. I can and do live with this in much the same way as I live with the loss of loved ones I long to talk to again. It's a recurring pang, not a bleeding wound. It doesn't ruin my life.

However, I struggle when this loss is denied.  

In social justice circles, I often see arguments in favour of anger. The thinking goes like this: women and minority groups are discouraged from showing anger by the very same culture which gives us all kinds of reasons to be very angry indeed. David has written about it just this weekend. Learning that it is okay to feel angry can be a first vital step of our resistance.

This is sometimes extended into a command to get angry and stay angry, to express anger. Which is all very well if you're lucky enough to be able to channel your anger into something useful and productive without harming yourself or others. It's pretty hopeless if you're lying in bed, unable to do anything yet unable to sleep or rest properly because you're seething with rage.

So I have a different philosophy. It is okay to feel anger. Anger is a natural and important response to loss, trauma or injustice - if you try not to feel it, you're likely to run into trouble.

But having felt that anger, it really would be wise to seek out a way to open that clenched fist and let it go.

Another problem with anger – and its sister, guilt - is that it demands legitimacy. We might feel sad about lots of things, and sometimes feel foolish for feeling sad, but with anger, we can repress it because we think we're wrong to be angry, or get lost in it because we have a right be angry; someone or something deserves our anger, and us being angry is just.

But other people don't live in our hearts; nobody is punished by our anger or comforted by our guilt.

Meanwhile, the behaviours we adopt to cope with anger can be habit-forming and eventually dangerous. Various forms of explosive behaviour can cause an addictive release of endorphins, including things we do to ourselves like self-harm, starvation or over-exercise, as well as things we might do to other people and objects. Ranting on the internet at nobody in particular can be a fairly benign way of releasing all this unhelpful adrenaline, but it can do the same thing.

All angry behaviours are likely to escalate. You know that thing about how swearing is a great painkiller? Well, that's true, but only if you don't usually swear and you're not often in pain. If you're always stubbing your toe and responding with elaborate blasphemy and curses, they won't be working too well – you have to swear harder, louder and more disgustingly, in order to have any effect.

Behaviours don't actually have to feel good in order to become habits; they just have to provide relief.  

This is why Twitter is as it is - of course, Twitter is awash with love and kindness, but there are folk about, of all stripes, at all points on every political spectrum, who are permanently pissed off. Many of those people have something very real and horrible to be angry about, but without a break from it, it's only going to get worse.

When I used to belong to illness-specific support groups, I saw the same; some folk were angry and supported one another in anger to the extent that they believed that their illness was by far the most stigmatised, that people without their diagnosis couldn't understand them, that some people with their diagnosis were giving the others a bad name by having different kinds of symptoms and limitations. Some wholeheartedly believed that other people's willful neglect was keeping them ill; that if only enough attention was paid to their condition, a cure would have been found years ago. None of these people had had an easy time or been treated with the full respect and care they deserved and for a few, the actions of others had undoubtedly damaged their health. However, the belief that other people have ruined your life (because such people did see their lives as ruined) is pretty much impossible to resolve.

It's going to be recurring theme in these posts about loss, but the disability rights movement helped me stop being angry with myself. Understanding the socially-constructed nature of disability doesn't stop me wishing I had less pain and more energy, but my body is off the hook in some major respects: I would love to be able to walk about, but the mere fact of having to move around on wheels should not mean I'm profoundly limited on where I can go and what I can do. Meanwhile, to operate with any sense of blame and innocence when it comes to ill health is to play into hierarchies which oppress us all.

It helped a lot when I stopped being around angry people. To avoid other people's anger altogether would be to avoid anyone in pain or having a crap time and I don't mean that at all. But for a long time, I was attracted to misanthropes. I didn't hope for love (or trust it, because it was always there somewhere) so I sought toleration; I was attracted to people who hated everyone but begrudgingly tolerated me. It felt like the safest kind of special status. Thus I lived with domestic violence for over ten years, with someone who was even angrier with me than I was.

However one great lesson I learned from the aftermath and recovery from that is about trauma. Trauma victims and survivors frequently blame themselves for what they've experienced because the psyche abhors helplessness; it is far easier, psychologically, to take on responsibility for things that were far beyond your control than to admit to yourself that you had no real choice. This is evolution; organisms that maintain undying faith in their power to avoid or escape perilous situations are more likely to survive.

Of course, in adult abusive relationships, there are choices, but greatly diminished ones. In illness - also a traumatic business - there are choices, but again, these are diminished. You can't see what's ahead. You can't stop the world. You can never avoid risk. Your health is complicated and sometimes one aspect must take a hit on behalf of another. Some things matter more than health.

But most of all, again from listening to others on disability rights, I learned that my health is a morally neutral fact. If I am less well, it matters only as much as it matters to me.  I can only let anyone down if I make a promise and choose the day before my presence is needed to experiment with the unicycle. This is not something I often do.

Managing anger with things outside myself is all about identity. We talk about identity a lot, not because it makes us feel special or interesting, because these are things others reduce us to and we wish to resist this reduction. Disengaging from these identities, (insisting, "I don't consider myself disabled!"), just doesn't work for most of us. However, because we find ourselves reduced to a disabled person, a wheelchair user, a benefit claimant, a psychological services user and/ or a person with chronic illness, it's important to hold onto everything else we happen to be.

So, there are three things I try to remember about all the crap we receive as people with chronic illness:

1. I'm not alone in this experience, even if I'm alone at that moment in time. Someone else has been through this. Some experiences (like having trouble with benefits agencies) are almost universal. Some experiences come down to tremendous bad luck. Some people are victimised because of a combination of attributes which our culture struggles with, e.g. having a mental illness and a physical impairment, and being working class, a person of colour, LGBT, fat etc.. 


2. This crap is all about other people, fear and power, and the systems they create. Discrimination is very rarely motivated by conscientious belief. The nonsense disabled people have from benefits agencies is not about genuine mistrust (although that's how it manifests) – they simply wish to maximise the number of people who, overwhelmed or disheartened, will give up before they get the correct award. Politicians create narratives about hard working tax-payers' and benefit scroungers in order to distract from the origins of our economic problems. Right wing politicians are sometimes very good at advocating for their constituents with benefit problems – people can and often do believe two things at once.
   
   Street harassment, the bullying remarks of colleagues, family and other acquaintances are mostly about power and fear. These people are bullies (whether they do it all the time or once in a blue moon) and the issue is about them, their insecurities and anxieties. They say stupid things relating to our health because they can - because we live in a culture which treats disabled people as charity cases, demanding proof of our deservingness, legitimising speculation about whether our impairments are exaggerated, badly managed or taken advantage of. 


3. This stuff is never about who we are. None of us will never be everyone's cup of tea, but people who know and like us will, of course, be largely disinterested in our health, how we manage it, if and how much we work. They will be interested in us, what we're interested in, what we're good at, what we're passionate about. And when I do my own thing, exercise my skills, listen to the music I love etc., I am not anything like the person those bastards want me to be.

None of this is to minimise the scale of injustice – all these things applied to the disabled people entering the first gas chambers, along with everyone else who ever ended up being abused, tortured or killed for some aspect of their identity. The fact that prejudice is rarely authentic – that is, it is rarely arrived at through any kind of conscientious rational thought process – doesn't make it any less dangerous. This is in no way a sticks and stones argument. Sometimes we have no choice but to fight this crap. Other times we have to get away from it as soon as possible.

However, the more we keep hold of ourselves - our best complicated selves with our passions and talents and foibles and that birthmark that looks like one half of Jedward (but which, you wonder, but which?) - the better equipped we are to escape being utterly consumed by the rage.

Mother's Day, 2010

I had read that you should try to write fiction with just one particular reader in mind, even if your reader is an entirely imaginary person. It’s a mistake, I read, to write for a broad audience. It’s easy, I read (and found out for myself) to get distracted by the idea of different people reading your work. You can’t please everyone. You may shock, annoy or offend some of them. And you don’t want to write the book that wouldn't shock, annoy or offend anyone at all. 

Instead, I read, you should identify someone who you think will really enjoy what you’re trying to do. If you don’t know anyone like this, invent them. Make them up and keep them in mind.

I didn't know anyone like that, so I made them up; my imaginary ideal reader. Not someone who would unquestioningly adore every word I wrote, but someone who would love what I wanted to achieve. I made them up and kept them in my mind. They were quite appealing to me so they became a secondary character in my novel, a love interest in a rather unromantic book.

I made them up. Then a friend sent me to their blog.

………..

My novel was near completion when 2010 came around. I had worked so hard, for so long, with so many damn set-backs. There had been periods of months where I couldn't write, because I was too sick or because all my energy was otherwise spoken for.  There had been periods of months where I couldn't write because my confidence had been comprehensively flattened. And now, finally, I was nearly there.

A satellite image of the UK in January 2010.

This was a long, hard winter, the coldest in my life time. There was snow about for weeks. My then husband had had an argument with his family at Christmas and was spiraling into depression. In January, my friend Jack died suddenly – the third friend who, having enthused about my writing and looking forward to my completed novel, had died before I was done (I’m putting this in the context of my novel-writing; this was not my first, second or third thought on hearing of Jack’s untimely death). This was the year I would turn thirty and I started doing a Project 365, taking a photograph every day. 

There was something else going on. I would like to say that a rational calculation was taking place, but it wasn't. I would like to say that I was beginning to stand up for myself, but I wasn't. I often say, of this time, that my marriage was falling apart, but I didn't know that. Not yet.

I was very happy. I was not happy. I felt extraordinary well-loved; for much of my adult life, I’d been lonely, believing I was little more than a convenience or a useful ear to my friends, but that had all changed. Despite pessimism from my then husband (nobody will turn up and I’ll have to pick up the pieces!), I was planning a thirtieth birthday party with my three close friends. Two of them were old friends by then, but I’d only recently realised what that meant.

And thus, I felt full of love, but a love like molten lead; I was weighed down by it, burning up with it, in danger of starting a fire if I stood too close to the curtains. Sometimes I basked in the warmth and light of it all. Other times, I wanted to open a window and scream for help. That last sentence isn't a metaphor.

The last two blog posts I wrote before I finished my novel were On Not Being Beautiful #1 and #2. These are strange to me now, because what I wrote is perfectly valid, but I know they are written by someone who is regularly being told that she has the face of a Klingon, the skin texture of a pizza, her arse takes up all three lanes of the motorway or some variation of the above. At the same time, she has friends who casually tell her how good she looks, who greet her “Hello gorgeous!” or sign off e-mails, “Keep smiling, beautiful.” She's trying to navigate the dissonance.

Everything was rather like this. My friends were excited as I moved towards the end of my book, while my then husband said I wasn't going to make it and mocked every error or slur in my speech with, “I thought you were supposed to be good with words.”

………………

During the last month of novel writing, I went a little mad and this madness was that bloody novel. It sounds dreadfully pretentious - suffering for my art - and I do know it was completely unnecessary. If my life had been better, it would have not made me sick and, crucially, my work could have improved.  I didn't have to bleed all over the page (metaphor), I didn't have to go into hell and back just to get the words down (not sure). These days I can write with greater power and much less pain and mess. Back then, I was in pain. I was a mess. 

This is the sort of thing I got up to at this time.
(A sort of pyramid made up of white blister
packs on top of a wall socket against a red
wall. A tiny metal angel looks on.)

I couldn't work all day long, but it became very much harder to shut down my mind or escape into other things. I couldn't sleep when I tried and fell asleep with my fingers on the keyboard. I lost interest in food. I was sometimes confused about whether I was living in the story of my life or the story I was writing.  

I listened to music of flight and music of falling. I did a little yoga every day and always finished playing Otis Redding's cover of (Can't get no) Satisfaction. I played the Cranberries’ No Need To Argue album an awful lot, just as the daffodils came into bloom. 

Other things too, I would understand differently later on; my long exaggerated startle reflex was now ridiculous. Someone could casually approach me, no loud noise, no sudden movement and I would cry out in alarm. Then there were moments of high drama, threats and shouting where I noticed I felt nothing - worse, I was thinking about some trivial aspect of my novel, as if what was happening in the room was some unfathomable soap opera on the TV in the background.

I was also trying to help my then husband, because he was really very unwell. Every day I spend time looking for jokes or funny stories to provide a moment's relief. I rented movies I thought he'd like and watched every one by myself first, in case there was something that would upset or annoy him. At one point, I bought him smiley potato faces in a desperate childish attempt to put a smile on his face.  

The night before I finished the novel, I told him that I was starting to panic about the deadline I had set. He responded, “I don’t care.”

The next moment, an e-mail from Stephen; How It Ends by Devotchka. I began to listen, thinking, Oh god, this is long and I have no time, it’s got accordians in it and I’m going to have to say something polite about it! but then the piano started. It was oddly perfect. I listened to it on repeat as I worked. In the morning, I played it again four or five times until I got up the courage to send the long rambling e-mail I’d been writing, complete with a 144,000 word file attached.

In this e-mail, I tried to tactfully address the fact that Stephen might recognise himself in one of the characters, but he mustn't read anything into it. After all, Stephen has a different reason to walk with a stick and references Dawn of the Dead rather than Chopper Chicks in Zombie Town as an allegory for human endurance. The personalities may be identical, but I wrote all that before I knew him. I made him up! I don't want Stephen to think I am secretly in love with him or anything. 

I couldn't say all that. So I wrote around it. At a great length. 

 ..................

(The bottom of an unsent e-mail, reading
"Got to... click... send... button..")

It is Sunday morning; Mother’s Day 2010. I take this screen grab and put it on Flickr. Only one other person, apart from Stephen and I will see it and know what it means. But I am compelled to make some public record.

Then I click send.

Everything has changed. I've written a novel. I am not the same person I was yesterday, when I hadn't written a novel.

Stephen e-mails me with photographic evidence of my novel safely on his e-reader. He then sends the Thomas Truax cover of I’m Deranged in response to that weird rambling e-mail.  Half an hour later, he e-mails to tell me he’s read the first chapter. He's loving it so far.

(An e-reader held in a hand.)

I haven’t mentioned the fact that I've finished my novel to the man I am inexplicably still married to; I really hoped he would ask. But I tell him that Stephen's read the first chapter. No congratulations. He says, “Sure he’s not on top of a tall building, about to throw himself off to avoid reading the rest?”

My then husband is thinking about death a lot and imagines I have the same effect on everyone.

It’s Mothers Day. I must spend time with my mother.  

My parents and I go to my cousin’s house, where we have a meal with two cousins and an aunt (we’re supposed to be eating with my Granny, since it’s Mother’s Day, but we've managed to mislay her). We catch up with what was happening with everyone’s life, apart from mine. We talk about my sister, brother-in-law and nephew, we talk about other cousins, their partners, aunts and uncles, we talk about Granny and the great uncles and aunts. Even a couple of second cousins are mentioned at one point. Nobody asks me a damn thing.

I notice this - I do notice it, from time to time, the way my family believes I have absolutely no life to speak of - but I especially notice today because I’m thinking, 

This is the most important day of my life!

This really is. I consider blurting out, “I just written my first novel!” but I don’t. And to be honest, it’s just good to be out of the house and away from everything, to hear about other people's lives and dramas. People write books; it's not all that extraordinary. It's just extraordinary that I should.

It’s also good to have some time away from my laptop where I might anxiously await e-mails from Stephen. When I get back, he's e-mailing to complain that he had a sleep during the day and my book gave him nightmares.

The produce of my imagination has entered another person's subconscious. 

…………

On the Monday, while Stephen is still reading my novel, my then husband and I have a big talk. He tells me that he doesn't love me anymore. I am boring, unattractive and very difficult to live with. He knows he’s depressed and things may well change in time, so there's no point doing anything about it right now.

I have heard something like this before, several times. The routine is that I go on a sort of probation; try harder, avoid pissing him off so much and after a while, I will say I love you and I’ll get it back: “I love you too.”

But this time, I take it badly. A big chunk of the lovely awful molten lead inside me breaks off, leaving a deep physical pain, a gaping aching space in my chest where there should be no space. I weep. It is like witnessing a death, the totality of loss I feel.

Yet, straight away, I feel lighter. Lighter in a lost and listless way, but definitely lighter.

A friend and I have talked about me staying with her in Wales for a week sometime. I call her and we make a proper plan.

…………

On the Tuesday, Stephen finishes reading my novel. We talk on Skype for about two hours. He loves it. He is brimming with praise and talk of the bits that scared, moved or amused him. He is so proud of me, he gets a little choked up saying so. There are issues with pacing. There are a shameful number of typos. There are a few points of slight confusion. But he loves it. 

When we've finished talking, the man who doesn't love me anymore warns me, quite seriously, that I mustn't trust Stephen. He’s too nice. He couldn't possibly be being honest about it.  

I believe otherwise.

Contains Strong Language

Years ago, I was in a cafe listening to a conversation between a group of builders on their break. One man was telling a story about how his family had travelled to Greece to see his cousin ordained within the Greek Orthodox Church.

“My fucking cousin,” the man declared, “a fucking priest!”

As I learnt from my eaves-dropping, being ordained is a “big fucking deal” in Greece or at least it was in this particular family, who treated the occasion much like a wedding, with “a fucking banquet” and “fucking speeches”.  But towards the end of festivities, a crisis struck:

“We couldn't find my fucking cousin – the fucking priest! We look everywhere but he’s gone fucking missing in the middle of all this. And at the same time, we realise my fucking sister’s nowhere to be seen either. We look all over this fucking hotel we’re staying at. Then finally, in this big fucking dining room where the whole family is, someone thinks to pull back the curtain. And there, behind the fucking curtain is my fucking cousin – the fucking priest – and my fucking sister, and they’re, you know, doing it.”

One of the oddities of living in two households is the effect it has on my language. My in-laws don’t swear, ever. They don’t blaspheme. They don’t make rude jokes. I’m making them sound square, but there’s a lot of laughter in the house, and very little of it is ever at the expense of other people. I don't swear around them. In fact, I barely swear in their house out of earshot. Worse, I struggle to swear in writing when I'm there. 

My parents do swear, though not very strongly - mostly the B words; bloody, bollocks, bugger, bullshit. They were more careful when we were children and even these days, Mum often tries to stop herself – she reaches for Fiddlesticks! or Gordon Bennett!, but it comes out “Fiddlebugger!” and “Gordon Bollocks!”

I swear at my parents' house. I tell rude jokes. But I can't say I feel a lot more at home or more myself. I think I tell better jokes at my in-laws' where I can't always reach for the obvious. 

I once told the story of the builder, his sister and his cousin the Greek Orthodox priest in the pub. A friend then told of a man whose car broke down outside her flat. She knew cars, so she came outside to ask if there was anything she could do. Exasperated, the man pointed in the approximate direction of the engine and exclaimed, "The fucking fucker's fucked!"

Common problem with cars that age.

One day, I was in the kitchen at my in-laws' house when a bird flew in through the window at great speed. It bounces off my head, flew in a circle than crashed against the glass of the patio door as it attempted to leave. This all happened in a few seconds and it was a shock. I spoke. I said, “Goodness!”  Not even a “Damn!” or “Crap!”

(The bird was probably okay. It was alive, though stunned and it hadn't broken its neck. We put it under a bush and it did disappear - we hope it flew away.)

The other night, here at my parents’ house, a box of chisels fell on my toe – not just any toe, but the big toe whose nail has only just recovered after an eighteen month saga of infection, threatened removal, an in-growing crisis and and recovery. I said, “Fuck.” I said it a few times. But I know, had the same thing had happened at my in-laws, I still wouldn’t have sworn.

(My toe is probably okay. The next day, it was the next toe along which was bruised.)

I almost feel like it shouldn't be possible for spontaneous reactions, exclamations of shock or pain, to vary according to social context. When people live somewhere where they must speak a second language, I wonder how often they swear or curse in their mother tongue?  What does the context have to be?

When I had post traumatic stress disorder, swearing was a major trigger. My first husband used to call me shithead, shit for brains, I talked shit, my stuff was shit, I was a bitch, sometimes a cunt, I needed to fuck off, shut the fuck up or go fuck myself, and so on and so forth. If I complained about the swearing, I was being pathetic; it was just the way he spoke. He would have never used the phrase tone argument but that was the gist. But of course, tone matters. Tone is context.

“How are you doing, shithead?” said with a smile and in a friendly tone, preferably to someone who likes to be called that and is permitted to call the speaker something equally ridiculous is quite different from, “Shut up, shithead!” said in anger, even if it happens every day. And the shit is emphatic – it’s there for a reason, shithead is not the same as airhead, let along sleepyhead. It's no coincidence that someone who used this language was physically violent. 

Even my PTSD symptoms differentiated between different types of swearing. I had to adjust my reading and cull my Twitter feed of very sweary people, even people I liked and respected in other ways. But it wasn't just about the words, but the way they were used.

If I read “Bloody hell, why doesn’t [Named Politician] go fuck himself?”  

I might think it unnecessary and maybe irritating, but it wouldn't upset me. Big difference if I read

“Bloody hell, [Named Politician], why don’t you go fuck yourself?” 

This isn't just about trauma. I've been around the usage of "Fuck off!" as a warm, friendly "Give over!" almost like "Stop tickling me!" or the wide-eyed "Shut. Up." of adolescent disbelief. But unless you grew up with that, swearing in the second person can still feel like an attack. Especially in writing where there's no voice to reassure us.

Stephen was one of these poor kids who suffered that great indulgence-neglect of a TV in his room from an early age. He's also a massive film buff and you can’t really be that if you can’t tolerate the full range of the spoken word in English. He spent his teenage years travelling by taxi to hospital school, exposing him to both typical South East taxi-driver parlance, as well as the language of those classmates who were there for behavioural reasons or in one case, because they had impaled themselves while evading the fuzz. Thus, while his parents never swear, Stephen was in no way sheltered from foul language as a child. 

Yet Stephen almost never swears. He swears perhaps once a year. And when it happens, it's an earth-shaking swear.

I have pointed out that as a non-swearer, swearing would offer a little pain relief, at least in the immediate aftermath of injury. But it’s not in him. I have suggested he invents words that sound like curses for this purpose, but he is against it in principle. He doesn't even use the substitute swearwords available to him; no sugar, darn, blast or curses.

I'm not convinced this is entirely healthy. Not the not swearing, but the not even cursing, even mildly, when things hurt or go wrong. 

My swearing varies massively according to pain and stress. On a bad pain day, I can be oblivious to the amount I’m swearing, so much so that it’s disturbing to have it pointed out to me. Yet, although I'm less likely to spend time with other people on such a day, I know I still won't swear in front of anyone who might be offended. 

When I am stressed out, I become painfully aware of how much I swear. In recent weeks, our housing situation is looking to get sorted, but with no certainties and many causes of minor panic along the way. Plus there's been - there is - a family crisis afoot. I've been swearing like a trooper, I've been swearing in unhelpful ways about other people, I've been swearing in ways that would make me cringe to repeat.

And clearly, I should have a handle on this. My Granny may visit at the weekend and I won't swear in front of her, whatever happens. Burning rocks can fall from the skill and all I'll say is "Blimey!"

Blogging Against Disablism Day 2014 - Against "Awareness"

Do go read other contributions to Blogging Against Disablism Day 2014. 
Full image description and attribution at the bottom of the post.

There is a widespread belief in our culture that raising Awareness of illness and impairments benefits disabled people. Even if it were possible to educate the general public about every medical condition there is, this doesn't do anything to address the attitudes which cause inequality. In fact, I would argue that Awareness thoroughly supports those attitudes; disabled people are to be pitied, and if they can't be pitied, they must be hated.


Awareness is about Money.

Awareness Campaigns are primarily money-raising exercises. They raise money for charities and they provide very cheap human interest stories to fill magazines, newspapers and TV shows. Some charities are extremely worthwhile causes, but others are not - the mere association between an organisation and a group of people who need help and support doesn't mean that that help and support is forthcoming.

Meanwhile, as I've been looking around for graphics to illustrate this post, I have learned that one can buy a great number of Awareness t-shirts and accessories from companies who don't even feign affiliation to a charity. So there's money to be made all round.


Awareness reinforces a strict narrative about disability. 

It's tremendously important that disabled people tell our stories - all kinds of stories - but there are only three stories told about disabled people in our culture; triumph, tragedy or villainry. Awareness leaves the villains alone - nobody gives their spare change to help Blofeld walk again.

Instead, Awareness concentrates on the narrative which makes up The Tragedy Model of Disability:

"Keep Calm and Fight Depression"

1. Disaster strikes an innocent.
2. Our hero bravely battles against impairment.
3. The bittersweet resolution, which may be:
(a) Our hero succeeds in becoming at least slightly less disabled.
(b) Death and thus, the end of suffering.

Almost every news story and most fictional stories involving disabled characters follows this pattern. Awareness Campaigns' favourite subjects start out as brave soldiers, promising athletes or straight-A students - all the better if they are about to get married or start their dream job when they become disabled. Obviously, they have to become disabled in a way where they are blameless; for reasons that remain unclear, extreme sports injuries are fine but sexually-transmitted diseases are not.

Then they have to suffer; multiple tests, multiple surgeries, multiple experiments in alternative therapy, moments of despair (but preferably nothing as serious as a suicide attempt). And at the end, even though most subjects will still be disabled, it has to be played that they have overcome their impairment in some way. They may have defied all expectations to taking up macrame! Or they have a relationships! Or even a job!

"Losing is not an option"

When the disabled people are children, a non-disabled parent will often be cast as the hero in their place. Even last week, when a mother murdered her three disabled children in New Malden, near London, newspaper reports told this story, just hours after those children were found dead: We are reassured that the parents didn't know they carried the genes which would cause some of their children to have Spinal Muscular Atrophy until the mother was pregnant with the younger twins (Disaster strikes an innocent); the devoted mother (no quote marks) slaved away looking after her burdensome children with little outside help (Our hero battles against impairment). The children were "likely to spend their short lives in wheelchairs" but now they're dead, which is sad but not the worst thing in the world.

Quite unlike when non-disabled children suffer violent death at the hands of their caregiver - that is the worst thing in the world.


Awareness promotes a dynamic between non-disabled and disabled people which renders equality inconceivable. 

I've written before about the way that doing anything for disabled people, including normal things that family members, friends and colleagues do for one another all the time, can be framed as care and take on a special charitable status. Give your non-disabled friend a lift? That's a favour. Give your disabled friend a lift? That's care, have a medal, bask in the warm-fuzzy of your own philanthropy.

"I wear a ribbon for my hero"

Thus all interactions with disabled people become tainted with this idea of charity. Employers imagine that employing disabled people would be an act of generosity and compassion, rather than shrewd recruitment. Accessibility is not a matter of fairness, but kindness, and can this organisation afford to be kind? Governments are able to frame disability benefits and social service support as a matter of charity, discussing deserving and undeserving cases, as opposed to straight-forward eligibility.

This is a major factor in the abuse of disabled people, with disabled women twice as likely and disabled children three times as likely to experience domestic abuse than their non-disabled peers. Stand next to a disabled person and you'll be assumed to be their carer. Live with one and you'll be assumed to be a saint (see above, re the New Malden murders).

It's a common complaint from folk with chronic illness that they'll see their friends on social media sharing Awareness material, including aphorisms about the importance of loving and supporting someone with a particular condition, when they haven't made personal contact in months. But this is what happens when all interaction with disabled people is reduced to charity; you're not enjoying my company, you're giving your time to me. And if there's no praise attached, what's the point of that?


A little knowledge is a dangerous thing. 

Once I'd received my diagnosis, friends and family would take an interest in news stories about the Dreaded Lurgy. Most of these stories were human interest stories of the Awareness variety; stories about someone with the Dreaded Lurgy. A Day In My Awful Life or My Life-Plan Down The Pan - this sort of thing. I did meet one of my best friends through one such story, but hers was told with far more stoicism and grit than the others.

Anyway, these people with my diagnosis were, naturally, a complete mix. In some cases, I didn't even look like those people; the drugs I was on had made me fat, while some featured dangerously underweight women who struggled to keep any food down. Some of them described managing a part-time jobs, while I was rarely awake for a full hour stretch. Others couldn't walk or even talk, while I was relatively ambulant and nattering away just fine.

Thus, my diagnosis was gently questioned by well-meaning friends and family all the damn time. This was only sometimes skepticism about my account of things - usually the hope was that the doctors had missed something and maybe there was a cure for what ailed me.


Awareness places different conditions in competition with each other. 

"I wish I had breast cancer" - Poster for Pancreatic Cancer Action

Kery Harvey wasn’t wrong to wish she had Breast Cancer, a better understood, more operable condition with much better survival rates than the Pancreatic Cancer which would kill her, aged 24. But the advert, designed to raise the profile of the charity (there’s no information that might promote early diagnosis) is explicit about a message that many Awareness Campaigns aim for; this condition is the worst. It causes the most suffering to the loveliest people, in the most tragic of circumstances.

While there is a large degree of solidarity within the disabled community (hierarchy notwithstanding), communities built around a shared diagnosis are not always sympathetic to other disabled people. It is obviously true that some diseases are generally nastier than others, that some diagnoses are better understood than others and so forth. But, with the help of self-interested charities, illness-based communities can often lead themselves to believe that their problems are unique. Awareness promotes this mentality, pitching one condition against another for sympathy, attention, charitable donations and occasionally even government resources; I have seen on-line petitions demanding funding for very specific areas of research.

When the Robot Hugs cartoon Helpful Advice went viral with the caption “If physical illness was treated like mental illness” (not the artist's own words) it appeared in my Twitter stream on a daily basis for over a week. And every time I saw it, I despaired. People with chronic injuries and physical illnesses get advice about trying harder, thinking positive, avoiding essential medication and so forth all the time. Yes, the stigma of mental illness is undoubtedly worse. But pitching one condition, or group of conditions, against another, can cause hurt all round.

"Helpful Advice" by Robot Hugs.

The dramatic messages of Awareness Campaigns often reinforce or create new stigma.

"Who loves someone with autism?"
My guess is many people but few pandas.

The Caffeinated Autistic has a good summary with links to how, in their attempts to raise money and Awareness, Autism Speaks has described autistic people as if autism is a dreadful mask that the real "normal" children are hidden behind. This includes the now famous Youtube video where one of the board members spoke about contemplating the murder/suicide of her daughter and herself.

The insistence that mental illness is just like any other illness, i.e just like a physical illness, has helped to reinforce the idea that mental illness has wholly internal, biological causes and always can and should be cured or managed with drugs.

Attempts to promote the idea that invisible chronic physical illnesses are real, and not in the imagination of sick people, frequently use language which reinforces the false dichotomy between real physical symptoms and conditions, and imaginary mental health symptoms and conditions, further stigmatising mental illness and making it particularly difficult for people with both physical and mental health conditions.

It's your fault! If you're charged with sexual assault!

Breast Cancer is perhaps the best example of Awareness Gone Wild. In an attempt to market themselves as a fun sexy feminine product, Breast Cancer charities and companies wishing to make money out of pink things have made a fortune, but at the expense of women and others with breast cancer, many of whom are not young, thin, pink-loving white women whose main aspiration in treatment is to Save the Tatas. Barbara Ehrenreich's essay on her experiences with breast cancer is a good example of a great deal of excellent critque of the commerical tactics of Breast Cancer Awareness, which even includes a film Pink Ribbons Inc.


There's a Problem With Our Poster-Boy. 

Poor Stephen Fry. It’s not his fault; everything I've ever read or heard him say about mental illness in general or Bipolar Disorder in particular has been cautious and balanced. He has certainly dented the stigma of Bipolar Disorder or Manic Depression as something experienced by axe-wielding maniacs. However, at the same time, the strong association between the illness and Stephen Fry has very much reinforced the belief that:

• Bipolar Disorder is a condition associated with artistic genius. People with mental illness who are not artistic geniuses are still either layabouts or monsters. You can't be a regular person with average skills and aspirations and happen to have Bipolar.
• People with mental illness deserve our sympathy and respect because they are capable of massive success. Our cultural landscape wouldn't be the same without Stephen Fry, and that is why we should be cool about mental illness. 
• Bipolar Disorder manifests itself in occasional dramatic episodes but is otherwise easy to live with. Stephen Fry is an incredibly busy man, who is - as far as the public can tell - never too sick to work. When Fry attempted suicide in 2012, the public didn’t have a clue until he spoke about it the following year, by which point it was a past event; done, dusted and recovered from.

Stephen Fry quote about the one in four people who have a mental illness.

None of this is Fry’s fault - it is an entirely good thing that he gets to have a private life, and that dramatic events like suicide attempts can be talked about in hindsight and not as dramas unraveling on rolling news (also safer for the rest of us).

The fault lies in a media and a culture which generally under-represents and misrepresents people with mental illness. And people with all kinds of illness. And disabled people in general.


There's a Problem with Our Poster-Girls.

Women are more likely to develop chronic illnesses of almost all kinds. Women are also more likely to seek out others with their condition, join or create support groups, get involved with charities and campaigning. Men and others with chronic illness may struggle to find information and support which is not designed exclusively by and for women. However, when it comes to Awareness Campaigns, stories and images are dominated not only by women, but by a certain kind of woman; our culture's ideal victim.

The "Moving Mountains" Calendar sold to raise money
for the MS Society did feature a variety of women.

She's young, white and pretty. She's usually very slim and often blonde. Her impairment is the only barrier to her being a complete hotty. In fact, if she were fictional and non-disabled, she'd be exactly the sort of person who usually gets murdered at the start of a long-running television show.

Weirdly, her ubiquitous presence on any Awareness Day hasn't really changed the perception that young attractive people can't have chronic illness. That's because, in reality, chronic illness is a fairly commonplace misfortune; Awareness is about sensation; our pretty young victim's plight is tragic because it is unusual. Too unusual to say, be the young lad sitting in the seat reserved for disabled people on the bus.


There are too many conditions to ever be Aware of them all and what's the point anyway?

Pancreatic Cancer Awareness

If you see someone wearing purple or a purple ribbon it may be for ADHD, Alzheimer’s, Chiari Malformation, Crohn’s Disease, Cystic Fibrosis, Dyscalculia, Eating Disorders, Epilepsy, Fibromyalgia, Huntingdon’s Disease, Lupus, Macular Degeneration, Migraine, Multi-System Atrophy, Pulminary Hypotension, Rett Syndrome, Ulcerative Colitis and a whole range of different cancers and other conditions which I haven't heard of. And that’s before we get to matters not related to any specific medical condition, like suicide prevention or domestic violence.

"Hope - Support Epilepsy Awareness"

Presumably, you only ask the first time you see someone wearing a purple ribbon. You might not even ask why someone is dressed entirely in purple.

The question is, is there any specific medical condition that people need to know a thing about?  

"I love someone with Cystic Fibrosis"

AIDS Awareness was one Awareness campaign which worked very well. As well as going some way to address a terrible new stigma, it promoted changes in behaviour which helped to prevent a pandemic in Europe (something we often forget was perfectly possible). But HIV/AIDS was a brand new disease.

Fibromyalgia Purple Ribbon Tree

There are symptoms we need to learn about for purposes of prevention and early diagnosis, but most of these symptoms could relate to a number of serious conditions; new pain, mysterious marks on the body or blood where it shouldn't be - I once saw a list of Symptoms You Should Never Ignore include sudden blindness!

But as far as being Aware of conditions for the sake of people who live with them, what does anyone really need to know?

My neighbour is disabled with what I've heard referred to as "One of those M conditions." Perhaps Muscular Dystrophy, Multiple Sclerosis or Myalgic Encephalopathy. I speak to my neighbour, but I've never asked, for obvious reasons. Apart from realising that my neighbour has an impairment and therefore is more vulnerable in bad weather or a power cut, could there be anything, any of us need to know about his specific condition?

The idea that having medical information will improve the way disabled people are treated rests entirely on a view of disabled people as charity cases who effectively need to justify their difference with medical information before they will be treated decently. The idea that disabled people will ever be seen, automatically and unquestioningly, as equal to everyone else, becomes inconceivable if people need to know about our private experiences and medical histories in advance.




Image Description and Attribution:

1. A graphic with red background and black writing reading "Keep Calm and Fight Depression". There is a crown at the top of the graphic. By Keep Calm Studio.

2. "Losing is not an option" - white poster design, the word losing in orange with a ribbon for an o. Other lettering in black. Available as a poster to raise awareness of "any orange ribbon disease" from Awareness Gift Boutique at Cafe Pres.

3. "I wear a ribbon for my hero" - black poster with white and blue writing and a large blue ribbon to the left. Available as Pancreatic Cancer Action features a bald young white woman with some raised areas on her scalp. There is a quote "I wish I had breast cancer." in large bold writing, acredited to "Kerry, 24 #kerryswish". Below reads

"Today 23 people will be told they have Pancreatic Cancer. Like Kerry, this is what they face:

• Only 3% will survive because of late diagnosis.
• Most will die within 4 to 6 months.
• It's the UK's 5th biggest cancer killer.

Pancreative cancer has the lowest survival rate of all 22 common cancers. Early diagnosis saves lives."

There's then a link to the webside at the details of the registered charity number.

4."Helpful Advice" by Robot Hugs. A grid of six illustrations entitled "Helpful Advice". The first features a figure in bed, thermometer in mouth and a figure above them saying, "I get that you have food poisoning and all, but you have to at least make an effort."

The second features a figure with a bleeding stump where their hand might have been. Another figure is saying, "You just need to change your frame of mind. Then you'll feel better."

The third features a figure leaning over a toilet, with another figure saying, "Have you tried... you know... not having the flu?"

The forth features a figure injecting their leg, while another figure says, "I don't think it's healthy that you have to take medication every day just to feel normal. Don't you worry that it's changing you from who you really are?"

The fifth features a figure with a bleeding abdominal wound with another figure saying, "It's like you're not even trying."

The sixth and final features a figure in bed with a drip and a heart monitor with another figure saying, "Well lying in bed all day obviously isn't helping you. You need to try something else."

5. Unattributed graphic found on Facebook as part of the "Light Up Blue For Autism" campaign, featuring a soft-toy panda raising its arm and the caption, "Who loves someone with autism?"

6. Design on a drawstring bag available to buy here to raise money for the US Breast Cancer charity Save the Tatas. It has a black background with white writing which reads, "Save a life! Grope Your Wife! Save the Tatas"

7. "Stephen Fry on mental illness" possibly by rationalhub on deviantART - a poster featuring Stephen Fry's smiling face (a handsome middle aged white man with a slightly wonky nose) and the quote,

"One in four people, like me, have a mental health problem. Many more people have a problem with that. I want to speak out, to fight the public stigma and give a clear picture of mental illness most poeple know little about. Once the understanding is there, we can all stand up and not be ashamed of ourselves, then it makes the rest of the population realised we are just like them but with something extra. - Stephen Fry."

8. "Moving Mountains" Calendar Cover by Steve Yates at Derwent Photography. This photograph shows the silhouette of twelve variously-shaped standing women, some holding umbrellas, on a hill. This 2011 fund-raising calendar featured nude photographs of women with MS in the landscape of Cumbria. All the photos can be seen here.

9. "Pancreatic Cancer Awareness" purple ribbon design available as a grosgrain ribbon from Brychan's Lair.

10. "Hope: Support Epilepsy Awareness"  unattributed, found at A Dog 4 Deeds post for Epilepsy Awareness Month, 2011.

11. "I love someone with Cystic Fibrosis" graphic available free from Cool Graphics

12. Fibromyalgia Purple Ribbon Tree is a tree design decorated by loops of purple ribbon. This is available asa fridge magnet from HomewiseShopper at Cafe Press.