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 - Denial

Content warning for brief references to self-harm, discussion of bereavement and psychological abuse.

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:


For the first two years I was sick, I wasn't in denial so much as ignorant then optimistic. My health was up and down, so I assumed that very soon, things would pick up, and up and up and up. All the strategies I was given were about resisting my illness. Do as much as you can. Keep going. Have a go, even when it hurts. Stay positive.

By the third year, it had gone on too long. The idea that I would not be going to university at the same time as my peers was unthinkable. It wasn't that my academic career had ever been central to my identity before then, but all my other identities had dropped away. My greatest passion - acting - was now impossible. My role in all friendships and within the family had greatly diminished. I couldn't sing more than a few lines. I couldn't make art. I couldn't write stories. I was struggling even to read.

All I had left – and what my parents were most worried about, the one thing, apart from my health, that others asked me about – were my studies. I didn't have anyone breathing down my neck on this, but I felt an immense pressure. If I stayed sick, I was going to let everyone down.

Here are some ridiculous things I did in that third year:

• I went from studying a single GCSE to trying to cram two A-Levels into one year. If you're not familiar with the English and Welsh education system, that's increasing my workload by about five times, without any improvement in health.

• I began to write the story of how I got better. In the past tense. When writing anything was a tremendous effort. Which is why I only used up the first few pages of the lovely new notebook I'd chosen to write in. Such a waste!

• Most ridiculously, I asked my parents for a new bicycle for my eighteenth birthday. Before I was ill, I used to cycle all over the place. I'd had a few bikes before, but never a new one and I had absolutely never bought or asked for anything which I didn't then use. Thus I reasoned, my capacity to balance on a bicycle seat and peddle with my malfunctioning legs would just have to improve accordingly.

All this may sound daft, but I want you to imagine this in a bad movie. A sick girl who has significant trouble walking buys a bicycle because she's determined she'll recover to a point where she can cycle again. She begins to write the story of how it's going to happen. She takes on all the work she needs to get her into university (Cambridge said they'd consider me with just two A-Levels, given the circumstances).

She has to get better. She deserves to! She has hope in the face of dwindling odds. This girl isn't a fool – she's a hero. The final scene of the movie has her either peddling off into the sunset or with a shot of the pristine unused bicycle, propped up against her gravestone.

I didn't die, though my health got much worse and I entered a darker, uglier level of self-doubt. Maybe I was kidding myself about trying so hard, when really I wasn't? Maybe on some unconscious level I wanted to be ill? Maybe I didn't want to be ill but a part of me was making myself ill just to spite myself and cause distress to everyone around me? By this point, I was cutting myself and stockpiling meds. Soon after, I got together with my first husband, who hurt me even more.

.......

On the 26^th August this year, I will have been ill for twenty years. I'm not upset about that, but I've been thinking about it and want to write something about loss and chronic illness. I want to use the Kubler-Ross model of coming to terms with loss which, though imperfect, covers all the bases; the process of denial, anger, bargaining, sadness and acceptance.

Denial is a psychological defense against very difficult facts, but it's almost impossible to sustain on your own. Usually, when a loved one dies, it can take a few weeks at least to fully comprehend the fact - it's healthy the pain doesn't come at once. But sometimes, someone is informed of a death and simply refuses to believe it. This usually lasts moments, or minutes and occasionally a few hours. Then it shifts, because however gently they are treated, everyone around them is contradicting their belief. Abuse victims can remain in denial about the nature of their relationships for years, because there's either no opposition – other people smile and nod when they say everything is fine – or that opposition is discredited by the abuser.

Meanwhile – and this will be a recurring theme as I write about loss – with chronic illness, you can't just come to terms with these facts in one dose, even it is spread out over months. There will be other losses, relapses and complications, - even remissions that stabilise far below the point you hoped for. There may be points where you realise you have to drop some work you're doing, studies or hobbies, a point you realise you can't have the family you'd like or can't play your preferred role within your family. You'll miss events - weddings, parties, Christenings etc. - which will never happen again. You may lose friends, when your  illness gets boring. There are all kinds of ways which you won't get to be the person you wanted to be - not because you chose to be someone else, but because of illness.

Of course, everyone experiences loss, but the loss associated with illness complicates regular loss - if only I wasn't ill, things would be different, maybe this might not have happened, maybe this would be easier. I wasn't devastated by the death of my maternal grandmother last year, but the fact I was too sick to attend her funeral sent me into a couple of months of emotional disorientation.

Fortunately, you don't have to mourn for the whole thing at every set-back, but loss is dark pool which settles for a while, only to be disturbed again; sometimes a mere ripple, sometimes a splash.

After that terrible third year, I never again counted so completely on my health improving, but there would be other times I overestimated my (usually deterioating) health and stamina when I really should have known better, times when I worked on the basis that my good days would be my normal days from now on This would always coincide with desperation, self-doubt and external pressure.

.........

As soon as I started to think about writing about chronic illness and the Kubler-Ross model, I noticed how our culture discourages people with chronic illness from getting to that final phase of acceptance. Our culture actively encourages denial (as well as anger, sadness and bargaining especially). As I say, it's almost impossible to maintain denial on your own.

I generally enjoy my life very much. I'm writing about loss, but loss is part of life and doesn't stop it being mostly great. However, sometimes I'll have this conversation when someone implores me to keep positive. Not that they think I'm not making the most of life, but because I'm not highly invested in the prospect of getting better. I'll hear that I shouldn't “give up” - I should keep hoping for a cure, pestering my doctors for tests and experimental treatments, trying alternative therapies, restrictive diets and so on. I hear this both from other sick people who have got themselves a bit stuck, and from healthy people who really have no concept of how incredibly short life is and how very much shorter life is if you have to rest more than half the day.

However, I have many advantages when I roll my eyes at this. Meeting the disability rights movement made such a difference; it made my illness personal and private, separated out the things I can attempt to address (physical access, social attitudes etc.) and released me from the sense of obligation to fit our culture's model of a deserving sick person.

Some people are much less lucky and get stuck on denial, even after years of illness. A few times, I've come across people who are convinced that they have found the answer and – understandably, altruistically – wish to share the good news with other people. In the worse case, I was put in touch with a friend of a friend, a man in this thirties whose parents were spending twelve thousand pounds a year on a single nutritional therapy regime. Twelve thousand pounds – it crossed my mind that even if this worked and I regained full health, I could probably never earn enough to pay for it. But of course, it didn't work.

He'd been on this regime for a year or so when the therapist used some kind of mystical scanner and declared that the illness had left his body. Completely cured, his body and immune system remained weak and just needed building up again (with this ongoing course of expensive therapy, funnily enough). But as our conversation progressed, I realised that he hadn't really seen much improvement at all; this weakness was basically all the symptoms he'd had before, only with a different explanation.

Someone who has never encountered this might think such a person would have to be terribly gullible, foolish and perhaps a little unhinged. He wasn't. He was a pleasant, sensible father of three who had worked as a teacher before he was ill. He just couldn't see a life where he didn't get well. Given their financial investment, his family obviously had the same imaginative block. It wasn't that he was pretending to be well - he still wasn't able to work or walk significant distances  – but having been told that he was well, he chose to believe it.

I describe this as the worst case because, well, twelve thousand pounds a year. But there have been others and it's always tragic. You generally lose touch with these people, not because of arguments (you don't argue with this) but because it becomes impossible for them. How can you face people around whom you evangelised about a cure, when two or three years later, you are still demonstrably unwell?

But of course, in terms of stories, our culture loves this stuff.  Illness is something to be fought - Beechams will help you fight a cold, David Bowie just lost his battle with cancer. This is all denial; There is no cure for the common cold - if you have anything but a mild cold, you will feel rotten and infect people around you. Whatever courageous attitude Bowie adopted towards his illness, he died because of a great collection of circumstances which amount to bad luck - had he survived, he wouldn't have fought it off, but merely been luckier.

Hope is a great thing and looking after one's health is entirely sensible. Placing faith in the impossible (or even the rather unlikely) is a waste of life.

.......

There's one more point to be made about denial, which makes it unique among the phases of grief: other people will try to get in on the act for sinister purposes. 

Naturally, some folk do go into denial about the deteriorating health of a loved one. They desperately want there to be a simple solution, and for things to go back to normal, so they pretend that's going to happen. This can cause a lot of stress, but it's unlikely to last long. 

However, the very first thing a person does if they wish to bully, undermine or control any disabled person, but especially one who is sick with subjective unseeable symptoms, is to cast doubt on their impairment, speculate that they could try a bit harder, that their account of things is inconsistent, that maybe there's a part of them that is seeking attention. 

And these two things – someone profoundly distressed about another's state of health, and someone exploiting the opportunity to exert power over them – can be easily confused, with disastrous consequences. When friends, family, quack therapists and occasionally even medical professionals get up to that crap, a sick person can be easily dragged into that very dark and ugly place I described earlier (Is it me? Am I doing this to myself?).

Again, this cruelty is in our culture. This is what the benefits agencies do – they endlessly question perception and imply dishonesty in rock solid cases. This is what newspapers do when they complain about scroungers. People who do this to their own family and friends aren't in the least bit original, but their message must not be mistaken for love or concern. This is all about power. 

My top survival tip – not just when it comes to chronic illness, but life in general – is to trust yourself, your feelings and your experiences. This doesn't mean experiences mean what you think they mean (honestly, it was just a satellite – if you look at the sky for long enough, you'll see dozens), or that you should act on all your whims. The mind can play tricks on you, and you may have irrational thoughts, but you almost certainly do know roughly what's going on with you.

On some level, I knew I wasn't going to ride a bicycle again any time soon. But I was trying to defy my own reality. When others attempt to defy your reality on any matter - not to merely disagree with you, but suggest that what you feel is not what you feel -  you need to give them a very wide berth. 

This is what the Devil looks like.

We never take enough time to consider why tyrants are popular. Some of them, including Northern Europe's own mustachioed bogeyman, were elected by the people. Elsewhere in the world in recent years, people have voted for Putin, Morsi, Mugabe, al-Assad, even if the count is often rigged. But we’re not baffled, not really; these people who believed that the Devil was their best option either lived in the past, or they live in the developing world, which is as good as living in the past. They are vulnerable, gullible, much less sophisticated than us. The Devil walks in, horns polished to a shine, fork-tail swishing in the cloud of sulphurous gas that surrounds him and they have no idea at all.

Only this is what the Devil looks like. The Devil looks just fine. He can talk okay, is arguably charismatic, but his magnetism is not supernatural. He comes across as a decent sort of chap. He makes a few extreme statements - so sometimes he goes a little too far - but at least the man is honest, horns unpolished, refreshing in his candor. And he's funny. Charming rather than seductive. His blunders only prove that he is human.

He is nothing special, this Devil. I don't mean merely that he doesn't look that special, but if we’re honest (and we rarely are about this), evil is quite commonplace. The Devil has many guises; tyrannical regimes come in many bitter flavours. Yet there are three things all tyrants have in common:

• They happen to have massive, massive power.
• They use fear-mongering and scapegoating to maintain their power.
• They are in love with their own reflection, with an anxious need to protect and manipulate their image, as they imagine it to be, in the eyes of the world.

The massive power is what makes all the difference. It's an external factor; something that other people, circumstances, history or brute force makes happen. Look around for a leader who merely meets the second and third criteria and you have three out of our last five Prime Ministers. We only point and say, "Look, it's the Devil!" when they've been completely let off their reigns. When hundreds or thousands of their own people are imprisoned or violently killed.

So this is what the Devil looks like; like so many other politicians with a suit and a sound bite. And that’s part of our trouble when discussing his rise. People called Thatcher a fascist. People have described Blair as a murderer and Cameron as a man with no conscience. We’re not talking about people you’d leave your pet goldfish with – not if you didn't want it be sold off, drowned or abandoned with nothing to eat.

Only none of them made a bid for power on a platform of socially-retrograde authoritarian nationalism (or, you know, Fascism), suggesting we be afraid of our neighbours, with fellow candidates advocating the execution of minorities and political opponents. Other sinister political figures of my lifetime had a far nicer image to preserve. That's part of the reigns I mentioned.

A lot of people can smell the sulphur just now.

There’s a now much-quoted blog post by poet Michael Rosen which includes the passage:

"Fascism arrives as your friend.
It will restore your honour,
make you feel proud,
protect your house,
give you a job,
clean up the neighbourhood,
remind you of how great you once were,
clear out the venal and the corrupt,
remove anything you feel is unlike you..."

On Twitter, Steve Graby objected: “Worth remembering fascism comes as your friend IF you are white, straight/cis and non-disabled. Otherwise it's pretty blatantly your enemy from the start.”

That would surely be the case if everyone knew what the Devil stands for. But it is not a civil duty to keep track of all the political goings on, to read the full manifesto rather than the single-page pamphlet. It is not morally irresponsible to zone out while the politicians bicker on the breakfast news. And many ordinary fallible people do. Most people who vote for the Devil care about one or two issues and see that guy as the guy who’s going to fix them.  A lot of people vote for the Devil just because they don’t like their other options. Evil is commonplace, but naivety is pandemic. It's part of our charm.

This is what the Devil looks like. The horns and the fork-tail? All that's in the small print. There’s good and bad news about all this:

The bad news is that ordinary and fallible people can be taken in by the Devil. They don't have to be very bad or stupid, just misguided. Worse news is that you are as ordinary and fallible as the next person. He would have to wear very different clothes to fool you, of course. And maybe you do read the small print, and maybe you’d never place your vote on anyone less than a saint (abstention again, is it?), but at some point, in some context, you may well shake the Devil’s hand.

The good news is that people who support the Devil, vote for the Devil, are not evil or beyond reason. There’s as little reason to despair of your neighbours as to fear them. Better news is that a population of ordinary, fallible people in a country not yet overwhelmed with despair due to famine, mass poverty, internal divisions and war are more than capable of keeping the Devil in his place.

Despair is always the danger. Right now, politicians are so despairing of their own people that they grit their teeth and flare their nostrils, trying not to gag on the sulphur and give away the fact they can smell it. Meanwhile, some of them are, themselves, a little bit evil and the presence of the Devil beside them can only improve their own precious image. But politicians aren't very important.

Last week, I was rolling round my village, looking at potential places to live. And the thought crossed my mind,

"What if people put party political posters in their front windows? What if we find somewhere perfect but we know, without meeting them, that the neighbours are a bunch of bastards who hate people like us, our friends and families?"

And I knew I was wrong at the time (and I saw just one poster, in the house of someone who always parks their sports car on the pavement so that my wheelchair is in danger of scraping the paintwork as I pass). Then this weekend, I hear that I should prefer not to live next door to Romanians and I felt even more guilty. It would be reasonable to assume that people with those posters in their windows are ordinary, fallible, just not paying so much attention, maybe with a little less to lose.

This is what the Devil looks like. His potential power lies in our despair at each other.

Care & Familial Responsibility

When I wrote Why does disability make people more vulnerable to domestic abuse?, I talked about how carers are often seen as universally saintly and this can mean that it becomes harder to question whether they're doing what they should be. There are other, related effects. We praise carers, but - as with the sanctity of motherhood - believing that people are endowed with magical powers of patience and wisdom, we tend to stop supporting them (what could a mere mortal do to help?) and certainly don't value what they do in any material way.

The week before last, Jeremy Hunt gave a speech vaguely advocating that families care more for their elderly - that we should aspire to be more like cultures in which care homes are "a last resort." This is so cynical, it makes my skin crawl. Then the lovely Glosswitch wrote about caring for her brother, and her fear that her caring role will increase as her parents age.

What are the rules for caring for a sibling, anyway? I'm not sure but I've always felt they must be different to those that apply to parents or offspring. Indeed, I've often hoped I'd find them written down somewhere: 

Rules for Caring: 

• children – definitely 

• partner – of course 

• parents – probably 

• grandparents – maybe 

• siblings – siblings? Who do you think you are, Mother Teresa? Surely everyone draws the line at siblings, not because we love them less but because it's just too hard.

So I really want to talk a bit about care and familial responsibility. This post is a little epic and Glosswitch's bullet points won't be the last.

Apart from any kids who you brought into existence, I don't believe you're responsible for any family member just because of blood. Yet we're all responsible for the people we love, for people who have loved and cared for us, and that's the same whether they are blood, related through marriage, or our close friends. If you love people, you need to look after them as best you can, whatever that entails.

But that doesn't mean that you should ever have to perform care. Two things worth mentioning before we go on:

1. Here, I'm talking about responsibility. Sometimes, people have no real choice about becoming a carer and that's a terrible thing. This post should demonstrate why this choice is essential.
2. Fortunately, most people never even face this prospect. We're sometimes presented with a picture of old age where everyone needs round-the-clock care. In reality, most people grow old and remain independent until death or shortly before death. Hooray! 

Right, back to what happens when folk do need care..

Granny Kelly told me a story about when her own grandmother, who lived next door, was sick. This was the 1930s and my great great grandmother had a morbid fear of the hospital - everyone she knew who had gone in alive had come out dead. So Granny's mother cared for her bedridden mother, whilst running her own home and bringing up her three children.

One day, Granny's aunt came to stay with the old lady and give Granny's mother a rest for a few days. The aunt didn't even last to midnight, before she came round to Granny's mother's house, knocked on the door and begged for her sister's help. She could not cope with her poorly mother. She could not perform care. She had to go home. So she did.

This is the first reality of care within families: Some people are extremely ill-suited to this. I could look around my family now and tell you who would do well caring for their parent, partner, sibling or child should they become disabled  (I could tell you some of these things from personal experience).

This is not about how nice people are or the quality of love in their hearts.

Although needs vary, I'd say a typical carer needs to be pretty good at

• Working to a strict routine; meals at these times, drugs at these times, the same every day.
• Being able to rest and sleep during breaks, as opposed to the one long break most people have from the end of work in the evening to the beginning of work next day.
• Flexibility. All plans may change.
• Not getting easily bored.
• Not panicking in a crisis. 
• A certain kind of detachment when it comes to bodily fluids, effluent, injury and nudity.
• Respecting the inherent dignity of a human being, even when they are helpless.
• Reassuring people.

For some people, in the right circumstance, this stuff comes quite naturally - I've written before about how tasks we could define as "care" can merge with the natural teamwork that takes places within a partnership or family. But people and family dynamics vary hugely.

Take reassurance as an example. This is an essential skill for many carers; people often need reassurance when they're distressed, confused or in pain - let alone when they're having symptoms that will one day kill them. And that isn't something that comes naturally to everyone. If you think about times you've been in a real panic, then think through your friends and family and consider how many you're bloody glad were nowhere in sight. Some very lovely people have a habit of pouring petrol onto flames.

This doesn't mean that people can't or don't learn new skills - people often do. But if they can't, you're looking at a very miserable carer and very poor quality of care.

And that's plain old innocent aptitude. There are loads of families - there are elements of this within my own - where there's a great deal of talk of love, charity beginning at home, doing anything at all for one's nearest and dearest, but a complete lack of action or support when help is really needed.  Some people find illness in others irritating and lose patience when their partner has a cold, let alone something more long-term. In fact - as anyone with chronic illness will have learned - many people just don't have the stamina for any kind of problem that goes on and on and doesn't have a simple solution and a happy ending.

It would be great if everyone acted in the best interests of the people they love.  However, when they won't, insisting that they should does no good to a disabled or elderly person (nor indeed, does reminding them that their family could function differently).

Then there's the fact that some disabled and elderly people are extremely difficult to deal with. Some people who require care aren't pleasant people.  Some parents have given their children a lifetime of ill treatment before needing help in their old age. Others are decent caring folk who nevertheless become ill-tempered and demanding when living with illness, pain and impairment. Just as some people don't cope at all well with care, many people cope very badly with needing help, and find it much easier to snap at family members than they would at a professional performing a paid service (a professional who could resign their position if they feel mistreated).

And that's before we talk about conditions. Caring for someone with severe autism is very very different from caring for, say, someone with muscular dystrophy. Meanwhile, most conditions effect different people very differently - coping with someone who has profound dementia but is cheerful and co-operative is a completely different kettle of fish to dealing with a loved-one who - through no fault of their own - is now aggressive, even violent towards you.

And all of this is before we talk about what is practically possible. My Gran has four children, ten adult grandchildren and a few adult great grandchlidren (she is a great great grandmother), most of whom live within the same town. But when her health deteriorated, there was nobody who could take on a full-time caring role. There was nobody who met the following essential criteria:

• In possession of a house with a spare room and bathroom that was physically accessible to Gran or
• Able to practically move into the small spare room of Gran's bungalow.
• Not working or studying full-time. 
• Not chronically ill.
• Not on the list of people Gran strongly disliked and mistrusted even before she got dementia. 
• Not on the list of people Gran had so deeply hurt or offended, they may not show at the funeral.

So my Gran went into a care home. It was the last resort, but really, it shouldn't have been: my Gran suffered a series of falls at home, including one where it seemed clear that she had left the gas on, had later smelled gas and had fallen in her hurry to leave the house. The general feeling was that Gran would suffer a great deal leaving her home and she would stubbornly resist. In fact, she adjusted to it in the blink of an eye and quickly became happier than we've ever known her. She's currently insisting that she is engaged to another resident of the care home, although she's forgotten who that is.

Of course, this isn't the way things are, but our experience. It would have still been the right thing to do even if she'd hated the care home - she was made safer, and none of us could keep her safe otherwise. No amount of love or concern keeps someone safe when they really can't be left on their own for any period of time.

---

So, what if you love someone who needs care but you're not in a position - whether through personal, practical or financial reasons - to perform that care? Well, the great thing about care work is that it can be performed, to a very high standard, by professional people. But (a) someone has to make sure that's happening and (b) good care only gets you half way to good quality of life. There are a thousand things we can do to support our disabled and elderly loved-ones and their carers (paid or otherwise) without ever having to see them naked.

People often fail at these things for a few different reasons:

• The sense that anything done to support disabled people is a tremendous chore/ act of charity. 
• Guilt. I feel guilty I can't do more, so I'll pretend there's nothing I can do.
• The thing mentioned above about problems that go on and on and can't be fixed.
• It really is easy to get on with my busy life and let time (and good intentions) fly by.  
• Generalised squeamishness about age, illness or disability.
• If I can't be the hero of the hour, I'm not playing the game.

Jeremy Hunt talked about loneliness, but as Aditya Chakrabortty pointed out, young people are more likely to be lonely than older people. Disabled people of all ages, especially those not in work, are much more vulnerable to loneliness than say, my Granny Kelly who at ninety, keeps a calendar jam-packed with family visits, trips out with friends, concerts and church events.

But receiving good quality care is a necessary but not a sufficient condition to a disabled person avoiding loneliness and having a good quality of life. We all need to look after one another, best we can. 

How to Support People in Abusive Relationships #2 Valuing Oneself

My first post on this was about helping someone to learn to trust themselves.  This bit is (roughly) about encouraging an abuse victim to learn to value themselves.

This isn't about getting a person to feel good about themselves, so much as encouraging the fairly fundamental idea that neither they, nor anyone else, deserves to be abused. It seems very strange now, that from time to time over a period of years, I would worry that my partner would strike me too hard, at the wrong angle, and I would fall against the wrong kind of surface and be seriously injured or killed. And whilst, as I say, the risk occurred to me, it wasn't an urgent matter. And yet I thought I had reasonably good self-esteem.

Some abusers do make their victims feel very good about themselves, but very briefly, very occasionally and often only in the direct aftermath of violence or betrayal. Victims end up living for those highs of praise or affection, appreciating them all the more for the contrast between that and the usual coldness and criticism. Oddly, Fifty Shades of Grey (yes, yes, I've read some with Jennifer Armitrout's commentary) illustrates this very well, with the heroine's inner goddess leaping about at the slightest compliment and during sex, when the rest of the time (which is most of the time) she is angry, puzzled, dejected, jealous, doubting, creeped out and very often actually afraid of the person she thinks she's in love with. (Incidentally, I don't think this means anything about the people who enjoy this book, except that this is probably the first porn they felt they had permission to read. Nor do I think it's an even slightly good reason for the book to be burnt.). Anyway...

There are many ways of making our loved ones feel valued, which in turn helps them value themselves. I hope most of those things are obvious, so here are some which may not be...

1. Don't think your disapproval will help at all.

Isolation is a huge factor in abuse. Abusers sometimes attempt to cut their victims off from friends, family and other sources of support, but failing this, they'll merely attempt to undermine all the victim's other relationships by whatever means. Outside disapproval is a gift to them, so much so that they may well make it up if it doesn't actually exist. They will work hard to spin whatever's been said or done so that the victim can think

• This person doesn't respect me or my choice of partner. 
• They don't understand me. 
• This person says these things because they want to control or hurt me. 
• I can't expect my partner to spend time with this person, who obviously hates them. 
• Any time I spend with this person is a kind of betrayal to my partner. 
• I must always put the best spin on my relationship in order to prove this person wrong. 
• If I ever so much as hint that we have problems, this person will say “I told you so.”

When I first got together with my ex husband, my parents were understandably upset – I was very young, in a very vulnerable position, both physically and mentally unwell and my ex was almost twice my age. They were having a tough time in their own lives and (in common with most abusive relationships) things moved very quickly. So they handled it quite badly. There was no element of my parents' disapproval making this man more attractive - their disapproval meant I had nowhere else to go.  I felt I had to keep spinning the relationship like it was all roses in the garden.

Years later, long after my folks had chilled out and made a massive effort to include my ex as part of the family, my ex continued to use the idea that they didn't like him and didn't respect me. In the comments on #1 post, Kethry described how her abusive ex went one further and attempted to portray her parents as abusers.  Even after I finally left, it was only when my ex started being a problem to them that I decided to tell my folks the truth.

Expressing an explicit objection to specific behaviour is a million times better than expressing general disapproval through hints, passive aggression and excluding the abuser from family events. Perfectly nice people are sometimes ostracized by disapproving in-laws and jealous friends. Abusers are likely to lie about what has happened but "They hate me because they don't think I'm good enough for her." requires less creative spin than "They told me off because I called her a stupid bitch in front of them."

On which subject...

2. Do object to abusive behaviour when it happens in plain sight.

It is okay to make it clear when things you see and hear are not acceptable. Reacting to this stuff demonstrates that we care about our loved-ones being in a bad situation. It doesn't always mean that we can do something about what is happening, but the expression of concern matters so much.  It undermines the bubble in which the victim is living, where abuse is a  normal occurrence.

Top tips:

• Address the abuser, if they are present.  It is their problem.  You and I know that what you say probably won't make any difference to them, but you owe it to others to treat abusers as if they are grown-ups, capable of taking responsibility for their actions, as opposed to the missing stair.
• If the victim is the only one around, give them sympathy rather than a telling-off.  I used to hear, "You shouldn't let him treat you like that." as if there was something I could and should be doing about it.  Far better was when I heard, "I'm sorry he did that. You deserve better."
• Object to the abuse, not the abuser.  The temptation to say "Stop being such an arsehole." is best resisted in favour of "Please don't do [specific behaviour]." 
• Be specific. For example, try to repeat the exact words they used rather than objecting to their tone or manner. Specificity makes it more difficult for the abuser to twist later on.
• Be as brief as possible and perhaps most importantly, 
• Don't get into an argument about it.  This is a very difficult trick, but is perhaps the most important. Abusers aren't any good at arguments, but they are pretty good at derailing them and twisting them into something else.  End the conversation with your objection.  Move on.  Either change the subject or walk away.  If you're not allowed to change the subject, walk away.

As human beings, we owe it to each other to object whenever we see bullying or mistreatment.  Sometimes someone is having a bad day, but they still need to be told.  Vulnerable people around us (to say nothing of any children present!) need to know when behaviour is not okay.

Meanwhile, when abuse happens in company and nobody says a word, it is very easy for the victim to imagine that everyone feels the same.  My ex used to lecture me on various of my supposed inadequacies in front of other people, and I realise now that usually, folk were simply too embarrassed to speak up.  It's  probably worth knowing that that's not always what it looks like. 

3. Talk about abuse.  Talk about abuse with everyone. 

There's a part of me that feels that, now life is so good, maybe I should stop talking about and writing about domestic violence. But quite obviously, domestic violence is a very common experience and a very damaging one.  If one person learns something which helps someone avoid or escape an abusive relationship, then it is worth rabbiting on about until the cows come home.

When I was being abused, I inevitably read or heard about domestic abuse from time to time. When I did, I found reasons why these stories were absolutely nothing like what I was going through. When friends and family told stories - even though few had any clue of my own situation - they were somehow more vivid and struck home.

Some examples of the stories I remember effecting my perspective:

• A couple in my social circle had had a very difficult time; the girlfriend had something of a breakdown amid all manner of personal and professional pressures. During this time – which was short-lived and over by the time the boyfriend told me about it – she had verbally attacked her partner and accused him of all kinds of ridiculous things. He told me, “I learnt for the first time how a man can actually be tempted to hit a woman, but you'd have to be a complete monster to actually do it.”  I was pleased that my friends were both physically safe, and wondered why I was not. 

•  A rather macho friend described abuse he had experienced which culminated in his being stabbed. He spun this story in a particular way – all the violence was down to the girlfriend's mental illness, and his reasons for staying with her were sympathy and concern for her safety. I don't know the truth - I really don't - but I suspected that (a) he had been manipulated, to at least some extent, in order to stick with her when she was regularly violent and (b) mental illness was a poor excuse for attacking someone once, but no excuse at all for doing it after the first time. 

• A gay friend telling me about the abuse and violence he suffered at the hands of his ex-wife. Years later, he still partly blamed himself because he was gay and couldn't give her the kind of marriage she wanted, despite wrestling with his sexuality and undergoing a series of exorcisms (seriously) to try to straighten him out.  I was shocked that he should blame himself and while the marriage must have been a bit of a disaster, that didn't make the violence somehow more reasonable.

•  My mother telling me the story of her young colleague coming into work, looking very upset. She said she'd broken up with her boyfriend and didn't seem to want to talk about it, but everyone rallied around to look after her. Later in the day, strengthened by the support of her colleagues, she lifted her skirt and showed the entire office a horrible bruisey carpet burn down the length of her thigh. Her boyfriend had pushed her down the stairs and so she had finished with him. I understood immediately the power of what this young woman had done and wished I had such strength. 

It's probably not a coincidence that three of these stories involve abused men.  For various reasons to do with my psychology - but probably not uncommon reasons - I have always perceived other women as being more vulnerable than I am. I tend to feel protective of other women who are in trouble, rather than relating to them (although I've got better at this). Meanwhile, the way stories of domestic violence are often told in the media and in fiction makes victims hyper-feminine; young, pretty, quiet, modest, nurturing and often from traditional backgrounds. I struggled to relate such cases to my own circumstances. 

Gender may be a fundamental factor in the way we are treated at times, but it is not a fundamental factor in life experience. This is one reason why I think it is very dangerous to talk about abuse as something that men do to women - it can alienate women, quite apart from people of any other gender. This is not to say that it's somehow sexist to discuss abuse within a specific gender dynamic. Discussing the experiences of abused women does not cause a problem for abused men - the absence of discussion about men's experience of abuse, and the very poor provisions for abused men is the problem. Similarly for people of other genders, those abused in queer relationships, adults abused by people who aren't their romantic partner and so forth.

All the stories matter for everyone's sake.

And on this subject

5. Don't be sexist

Seriously.  Almost every long-term abusive situation I have ever witnessed, heard or read about has featured gender as a weapon. This includes abuse within same-gender couples, mothers abusing daughters and fathers abusing sons.  The stereotyped flaws of men and women (e.g. men are rubbish at expressing their feelings or understanding the feelings of others), as well as stereotyped ideas about what men and women should be like (e.g. a real man never shows his emotions) provide a large and reliable arsenal of abuse available to any abuser, in any context.

Sexism is, of course, inconsistent, so these stereotypes can be applied inconsistently; one moment, I would be a disappointment as a woman, because I was fat and ugly, no good at multi-tasking and failed to meet my ex's bizarre standards of housework and tidiness. The next moment - and any time I was upset - I was chided for being a typical woman; over-emotional, unforgiving, demanding, talking too much etc.. My ex questioned my stated feelings if they contradicted what he thought a woman should or would naturally feel about sex, sexual jealousy, marriage, having children, family, friends, work and money. Sometimes he wanted me to be more like his idea of a normal woman, sometimes he wanted me to be less so.

The trouble is that these stereotypes are the foundation for lots of people's ideas about gender and certainly the basis for a lot of our humour and social bonding.  Having been looking at poems and other readings for our wedding next year, it's quite terrifying how many readings suggested for weddings, contain jokes which present men and women as creatures so inadequate and incompatible that it sounds to me like code for "This will never work out, so let's have a laugh about it while we can."

I know that lots of happy egalitarian couples make jokes about each other, playing on gender stereotypes.  Sometimes it means nothing at all.  Sometimes, it is a gentle way of negotiating one another's faults, particularly faults brought about by upbringing.  I know I am sensitive to this stuff.  But I became sensitive to this stuff, because during the years I was abused, part of my mind was always saying, "It is not fair that I should be treated this way, that I should be characterised this way and expected to perform this role." and part of my mind was saying, every time I heard so much as a sexist joke, "Well, everyone else seems to be cool with it. Even if I'm right, I'm pretty much alone on this."  This is to say nothing of jokes about domestic violence.

The same goes for all kinds of prejudice - any difference that the schoolyard bully would pick up on will be used by adult abusers.  But sexism has to be the big one that effects absolutely everyone.

6. If you are scared for someone, express your fears.

It is always a good idea to tell people you fear for exactly what you're afraid of.  At the very least, this begins a conversation the two of you need to have, even if it doesn't change their course of action.  Knowing that your loved-one has a vague sense of unease about your situation isn't much help at all (Parents really need to know this - some parents, not just mine, are very good at letting their kids know that they don't like a situation, when the kids don't have a clue what their actual concern is.)

The state of Maryland in the US have reduced their domestic homicide rates - rates that tend to remain stable over decades - by introducing a "screen" used by police officers called out to incidents of domestic violence (ht @pseudodeviant):

The first three questions concerned the most important predictors of future homicide: Has the abuser used a weapon against you? Has he threatened to kill you? Do you think he might kill you? If the woman answered yes to any of those questions, she “screened in.” If she answered no, but yes to four of the remaining eight questions, again, she was in. Among these were other, less obvious indicators of fatal violence: Has he ever tried to kill himself? Does she have a child that he knows isn’t his? 

The officer would then present her with an assessment: Others in your circumstances have been killed; help is available if you want it. If the woman agreed, an officer would dial the local shelter from a police cell phone (to prevent the abuser from finding out about the call) and hand it over. 

If you're worried that someone you love will end up badly injured or dead, let them know.  Don't catastrophise; abusers of all kinds are much more likely to commit murder than people who are not abusive, but that doesn't mean that the sister-in-law who calls your brother names is at all likely to end up killing him. She might, however, damage his self-esteem, his mental health, and will provide some very problematic messages to any children they have.  And it is okay for you to voice such a concern.

As with objecting to abuse, don't blame the victim "You'd be stupid to stay with him!", try to be specific, be brief, only say it once and make it clear that you're not going to say it again and again.  If you offer help (and it's generally a good idea to offer some very serious and flexible assistance to someone whose life you fear for), make sure that help is unconditional, with an open ended time-frame.  If you're offering to take someone in, also offer to contact refuges and support your loved-one through finding emergency accommodation elsewhere.

And make sure they know that you will continue to support them whatever they do.  It can take an abuse victim many attempts to leave an abuser. Zero-tolerance is extremely difficult. They may have false starts.  They may get scared or be moved to forgiveness and go back on their own accord.  But at no point does a person stop needing support.

The Goldfish Guide to Living With Big Breasts

Last week, there seemed to be a few young women about feeling miserable about their big breasts. Stevie at Vagenda wrote the rather disheartening On Having Big Baps and a young letter writer to Captain Awkward wrote about her mother who was using her breast size to critcise her weight, leading to a lot of discussion on big breasts in the comments, this post by Fizzy about bra-fitting and this excellent celebratory post by Elodie which all busty women should read, even if you don't have time to read my post as well:

The Cup Runneth Over: Love, Lifestyle and Clothing Tips For Large Busted Ladies

I wanted to this when I saw Elodie's post and thought, "Do I have anything further to say?" Possibly not, but I may say it differently, and this is a subject worth talking about as long as there are busty young women out there, feeling miserable about their bosoms.


What are big breasts for?

Breasts appear to have three biological functions.

1. They provide milk for suckling infants. But sometimes not.
2. They are a secondary sexual characteristic, which together with body hair and waist to hip ratio, help identify you as a sexually mature female. But sometimes not. 
3. They are an erogenous zone which can provide you with considerable sensual pleasure. But sometimes not.

None of these things are what your breasts are for.  They are just some reasons why you might possess them. Your breasts are yours to do with as you wish.

However, it's worth noting that none of these things depend on size; a big breasted woman is not more likely to breast-feed with ease, she is not imbued with a greater degree of femaleness and she us not more likely to take pleasure from her breasts.  Alas, biological function has no answers for our big-breasted questions!


So why do I have big breasts?

Minoan Snake Goddness, lifted from
Wikipedia's page on the Minoans

Genes, hormones, nutrition and quite possibly, a pixie curse. I understand that genetics is the big one but I am the only woman in my family who has particularly big breasts (given that the average UK cup size is now a D).

The great variation in breast size and shape is one of those little mysteries, like the distribution of men's chest hair.  There are great swathes of the world's population - entire ethnic groups - where breasts are almost universally small and chests are almost universally bald. Among other ethnic groups there is massive variation in both breast size and chest hair distribution. Who knows why?  But it's obviously not natural selection across the species - if heterosexual men consistently selected larger-breasted partners, breast size would be more consistent throughout the world.

(Check out the Embarrassing Bodies Breast Gallery for mostly pale-skinned bosoms in some of their considerable variety.)

There'd also be more evidence for our own culture's particular interest in big breasts throughout the world and our own history. This just doesn't exist. In most cultures, women's breasts are not nearly so remarked upon, in some cultures, everyday clothing givens very little away and in pockets of culture (which were once very much larger and more numerous pockets, like anthropological cargo trousers to the current hot pants of this practice) women go about bare breasted.  Breasts have to be understood very differently in these cultures, next to one in which it is possible to be arrested for exposing one's breasts in public, and where despite a great deal of bare female fresh and sexual imagery in film and advertising, it is rare to see an entire naked breast outside pornography.

(Which reminds me of when as a thirteen year old on the French Exchange programme, I saw nipples on a soap advert in the middle of the afternoon.  The father of the family, whose English was about as poor as my French, noticed my discomfort and declared, "I am shocking!"  I barely managed not to say, "Your entire country is, mate." )


So are big breasts not a sexual advantage?

Internationally, probably not.  In our culture, maybe, just now and to a limited extent. A quick leaf through the history of female nudes in Western Art will reveal that many different breasts can be both beautiful and sexually attractive. A quick leaf through our modern feminine icons, the women who get to be on the most sexy lists will reveal that this has not changed.  Whilst some individuals have specific preferences (and others feel obliged to), most gynophiles will tell you that breasts are quite lovely in all their variety. What's more, people's natural breasts tend to suit their bodies - nature is kind like that, in the same way you never get eye colour that clashes with a person's hair colour.

Our culture, however, says  "Look, look, look at the big breasts! Hilarious big breasts!"

Honestly, there are only one or two comments I have ever received about my breasts which weren't a bit of a joke. I'm gorgeous, of course, and I have had sincere compliments about various aspects of my physical appearance, but most of the breast stuff - and there has been a lot of breast stuff - has been a great big dirty joke. All the unwanted touching has been in jest (though no less awful for it). And this is not just among creepy strange men.  My breasts were a joke at primary school and in my all-girls high school.  My breasts have been a joke in my family. Big boobies! Ha ha ha!

Meanwhile, women with naturally large breasts can have the truly humiliating experience of disappointing a lover who has consumed too much pornography. As an eighteen year old virgin, I was informed that my breasts were saggy. They weren't and they're still not, but natural breasts are heavier than silicone and this can come as a shock for some wankers (I mean that word figuratively and literally).


How big is too big? 

As Elodie points out, linking back to a Shapely Prose piece, it is possible - and commonplace - for people to describe breasts of almost any size in a derogatory or sensational way. Very many women around average size imagine that their breasts are particularly large or particularly small, finding themselves being offered a padded push-up bra with one hand and a minimiser with the other.

I take a GG or H cup depending on manufacturer and my breasts are not enormous. You may have seen photos and videos of me and not noticed my bosoms. Many people who know me very well would not immediately identify me as a person with particularly big breasts. It's just not necessarily the first - or the twenty first - thing that people notice about a person.

I give this personal information because I've seen many letters and numbers thrown around in these discussions and many of them are much smaller than the ones I'm working with.  I'm reminded of a time in a changing cubicle in the Marks and Spencer lingerie department, realising I would not fit into the FF bra which was the biggest they had (they now go up to a K). Suddenly, the young woman in the cubicle next to me cried out (and she really did yell), "I can't be a DD cup - I'm not some kind of freak!"

That young lady was allowed to feel as she felt about her own body, but I know for sure that if she'd noticed me walking round the store, she would not have identified me or any other woman as a freak.

The top of a bra with a mp3 player clipped to it.
Bras have so many uses.

My perception of my bust has changed dramatically over the years. There have been great lows; for years, my appearance was a source of daily criticism and mockery from my ex. It's a very obvious thing to say, but increased confidence (and I have undergone a massive increase in confidence within the last few years) diminishes the prominence of a big bust - even though my posture has changed, and (when I'm not lying down) I generally sit up straighter with my chest relatively stuck out.  I am absolutely convinced that people notice my bosoms less now than when I was hunched over with my arms folded across them.  Despite the  frustrations, I enjoy shopping for clothes.  I get much less crap about my bust, far fewer jokes and comments now, presumably because it's obvious there's no shame there, no self-consciousness to poke  at or paint over with humour. In terms of my perception and my experience, it is as if my bust has gone from being a physical flaw to becoming completely normal in the space of a few years, without my body changing in any way.


So how big is too big?

Breasts could be too big if they - the breasts and not an ill-fitting bra - are causing us pain, unhappiness or dissonance.  The smallest breasts are too big if we don't feel comfortable in a body with breasts.  But if they are comfortable - or if the pleasure they give us outweighs any pain they cause - then they are just fine exactly as they are.

So, some advice on how to come to terms with and learn to love your big breasts.

1. A sense of proportion about your proportions.

In the absence of pain or dissonance, big breasts are not among the worst ways in which a body can deviate from the fictional standard model.  They can be expensive, demoralising and have social consequences but it doesn't compare to say, being fat, trans, having certain physical impairments or one or some of the above and having big breasts. The comments on the Vagenda piece quickly descended into an argument between thin cis women, some with big breasts, some with small, about who was most disadvantaged. Ha!

This may sound obvious and like I'm minimising the issue (tee hee), but I've not always been good at this myself.  Even without everything else, when I've been miserable about the ways in which my body doesn't work, I have fixated on its external flaws. One thing I have found very helpful in coping with chronic illness generally is to focus on the things my body can do and the parts of my body that work just fine.

I strongly recommend this for anyone who feels bad about their body.  My bosoms are just fine.  They don't have any work to do, but they're not painful and they do give me pleasure. On these grounds,  they're absolutely great, exactly as they are!


2. Buying a bra

I think big-breasted women have a simple choice here: you either get yourself a good bra that fits you well, or you don't wear one at all.  Personally, I don't enjoy being braless if I'm moving about, but an ill-fitting bra is so much worse than nothing. It feels absolutely miserable and with big breasts is likely to lead to chronic posture problems, back and shoulder pain, skin problems around the breasts and ribcage etc.. Also, it can look much worse, placing your bosoms in odd positions and causing you to hunch.

Bras with big cup sizes can be very expensive, but it would be better to get just one and wash it every few days than to make do with several that are the wrong size.  Personally, I buy almost all my bras on eBay and have been able to afford quite a collection.  It takes a little time, a trawl and a bit of a gamble (although much less of a gamble as time goes on and you get to know you're preferred brands). But I can get £35 bras for around £15 and less - much less if it's one a private individual has bought in error and photographed badly!

I sometimes get curvy-lady clothes, like this ace jacket,
as Christmas/ Birthday presents from family.
(me wearing a pink/brown tartan jacket)

Something else I've done is to ask for bras as Christmas and birthday presents from family. Which sounds a little weird, but as a young woman this was an item which I couldn't normally afford, was a nice pretty thing that was a pleasure to receive, and saved better-off family members spending the same amount of money on an ugly vase that I would only hide in a cupboard (or sell on eBay so I could afford a new bra). Obviously, I usually chose the bra, but weeks in advance so I'd forget what it was like and so was able to looked surprised.


3. Getting dressed. 

The first rule of getting dressed with big bosoms is that there are no rules about getting dressed with big bosoms. Stevie felt her boyfriend had a valid point when he complained that she wasn't dressing sexily enough. They're both wrong. A trenchcoat made of incontinence pads would be plenty sexy enough if she felt so inclined. Although it would get very heavy if it rained.

As Elodie puts it

"Do you know what type of figure you have? Oh god, you probably do. There’s the Apple, the Pear, the Ruler, The Strange, the Charmed, the Snail that Overturns the Nougat… the Hourglass. Because women love identifying themselves with fruit and objects! Pick up any magazine with Clothing Tips. It’ll rhapsodize on the natural, feminine beauty of the mythical Hourglass, probably saying something like “lucky bitch!” before going back to how Rulers can make their breasts look bigger, and Apples can make their everything look smaller. Let’s get rid of those notions now – let’s throw them out the window. You are a large-breasted person, yes. You are beautiful, yes. But fuck those magazines. Fuck ‘em. They don’t know."

Big breasted women receive two messages about getting dressed:

1. Cover them up.  Use tricks, colours, lines and layers to make your bust look smaller than it is. Wear brightly coloured knickers over your jeans to draw attention away from your bust. You are all out of balance. Establish a balance!
2. Flaunt those bad boys, girlfriend!

Dress is a form of communication but one we have limited control over.  Lots of outfits that are worn because of their power to communicate, nevertheless convey very different messages to different people; a police uniform, for example, a nun's habit or an expensive suit. 

Women's clothing is understood to have extraordinary powers, effecting other people's behaviour, let alone their impression of us. No woman can win with this, not really, but I think it's especially tough for busty women. Dress one way and you're immodest, a tart, your clothing invites comment about your body and event assault. Dress in the other way and you're a frump, unfeminine and not making an effort. In his capacity to critcise absolutely anything, my ex variously described me as dressing like a cheap whore and a sack of washing.  But I was wrong to think that there was a magical balance between these two insults, because they are insults.  By far the biggest effect your clothing has on others is through you. If you feel good, if you're comfortable, confident and cheerful, people will react to you better. The kind of people who are going to judge you because they can or can't see the shape of your body under your clothes aren't going to treat you like an actual person, whatever you do.

A brief detour into minimising...

Because I was tall, I usually had to play the male roles in school plays.  For this, girls like me had to have our breasts bound to us with bandages.  This was very uncomfortable and made us into rather strange new shapes (it's not like you can make the flesh go away, you can merely flatten it - to a limited extent - against your rib-cage).  It was also kind of weird and unpleasant to see it happening to others.

At some point in my teens, I got to the stage where minimisers were the only bras I could find in the shops which would fit me. I felt like I was being told that my breasts were simply too big, and I had to squish them down as I had for the school plays, only now it was just to play a woman. I didn't want to draw attention to my breasts, but then, I don't want to draw attention to my arse but I refuse to wear those horrible rubbery tube things that make your bottom smaller (or at least, redistribute your bottom over a larger area).

I hate the idea of trying to disguise a part of my body out of shame about it. If minimisers are more comfortable for you and allow you to wear nicer or more appropriate clothes, that makes perfect sense.  But don't feel obliged to hide something away because you feel your body is somehow offensive or inappropriate.

Back to Getting Dressed...

Wear what you like, but everyone should
have a dino hoody in their wardrobe.

Some clothes won't look so good on you as they do other women with different proportions. Some clothes will look better on you than they do on other women. This is the case for everyone. Have a look at photographs from fashion shows, where you have tall and thin young women wearing clothes by the world's top designers. Some of those clothes do not look good on those body shapes (of course, some of them don't look good at all, but some would look much better on, say, a short woman with a big bottom).

Of course, looking good is subjective and looking good is not necessary your top priority when getting dressed.  That's up to you.

Some clothes will not fit you properly, no matter what you do.  This can be tough - buying clothes for a special occasion in the summer, where everything is straps, halternecks or low backs, is very tricky. There's only one place I know where I could buy button-up shirts or blouses. When I was a bridesmaid, it took attempts by three different experienced dressmakers to make the dress design fit around my bust.  As well as making and dramatically adjusting clothes, I have taken some extraordinary measures to wear the clothes I like. In one case, I actually painted an area of a camisole the right colour to match the top I was wearing it under so that my vest looked like part of the top.

Elodie's post provides some excellent practical advice on this stuff, but you read all that already, didn't you?

4. Appreciating female beauty.

In her article, Living With Breasts That Can Be Seen From Orbit, Lindsay Miller says

I've found that nothing helps my breast-related self-image quite so much as sleeping with women. If you're not queer, sorry about that, but for the girl-on-girl crowd: When was the last time you thought “Wow, I wish her breasts were smaller/bigger/perkier/farther apart/a different shape”? Probably never. Probably you usually think something along the lines of “Hell yes, naked girl!” Seeing other women's bodies in a context where you're enjoying, not critiquing, can help you reframe your relationship with your own body in the same way.

I have an eye for the ladies but I'm not sure you need to be turned on by, let alone sleeping with a person, to notice their physical beauty. The trouble is that women are so often being asked to compare themselves to other women, as if there are a handful of standard beautiful women against whom all women's beauty might be measured.  You can look through a women's magazine and see a great number of beautiful women who look very much alike and nearly nothing like you.

But you can't do the same looking through a book on art, typing a girl's name into a search on Flickr or just looking at the various women you love.  Even if you can't find any physical feature that you find beautiful and which you also possess, you will at least see that beauty looks like very many different things, and so the chances are that others can see beauty in you.  Also, if you go for the Flickr route, you will encounter at least one cute animal who shares your name (here's mine).

( I recommend the same for men and people of other genders (see Genderfork) who struggle to accept their physical appearance, with or without big breasts. )

On a slightly negative note... I know that nobody who reads my blog would ever be involved in this sort of thing, but I've seen the posts going around comparing some thin modern celebrity to Marilyn Monroe with slogans such as "When did beautiful stop being this and start being this?"  I've seen people refer to curvy women as "real women" and lament the shallowness of men who date stick-thin beauties who have nothing between their ears or underarms (which is a lot like this infamous article, only in reverse).

This is not on.  Not only because it is sexist and sometimes outright misogynist, but because it can't possibly make such people feel better. If any aspect of one's self-esteem relies on the inadequacy of others, one is destined to be repeatedly indignant when those others get the luck, praise and love one feels entitled to. Not because really they're actually hotter than people who do this, but because they're nicer than people who do this. So there.


5. Accepting what your breasts are and are not.

Your breasts are part of your body which you are probably going to have to live with.  You may lose weight and your breasts will get smaller, but they will still be large in proportion to the rest of you (in fact, if the back size of your bra goes down with weight loss, your cup size may go up).  Surgical breast reduction is an option for some, but a radical and very expensive one.

Your breasts aren't part of your sexuality or even your femininity. They are just part of your body. They may be involved with both your sexuality and your femininity or they may not. You can be butch and big breasted. You can be another gender and big breasted. You can be asexual and big breasted.

Your breasts do not cause other people to behave in a certain way.  Together with other mammals which have mastered the art of not staring at others, human beings are not compelled to stare at your breasts, however big they are. When I am using my wheelchair, nearly nobody stares at my breasts, and they haven't gone anywhere (in fact, being sat down all the time, they're easier to look at).  The kind of creeps who stare at people's breasts are usually the same kind of people who can't look at disabled people at all.  A win for me, but the point is that this is a problem with other people, not your anatomy.

The same goes for comments and unwanted touching (including touching by a gay man making a television programme - honestly, I daresay some women enjoy being fondled by Gok Wan, but he never asks. Even people who have had to handle my bosoms for medical reasons have asked every step of the way).

Your breasts are not there for pleasing other people, whether suckling infants, adult lovers or the people you meet in your daily life. You are free to keep your breasts entirely to yourself, whether covered up or on display (to the extent the law allows). It's entirely up to you.

Go forth and enjoy your breasts!