Wednesday, October 12, 2016

On Loss & Chronic Illness - Sadness

Content Note: Discussion of depression, mention of suicidal thoughts.
Mr Goldfish has provided audio for this post:

My general plan in writing these blog posts was that I would conclude with Acceptance on 26th August, the 20th anniversary of my becoming ill. I suppose it is fitting that the last several months have been pretty rough and things didn't go according to plan. 

The forth stage in the Kubler-Ross model of grief is usually described as depression, but I'm going to talk about sadness. Depression and extreme sadness are different but despite many attempts to draw one, there's no magical dividing line between the two. Both can cause physical pain and profound exhaustion, both can damage one's physical health, quite apart from the ways they effect behaviour. Either one can lead into the other.

However, in general:
  • Depression may feature a great mix of negative emotions including extreme sadness but also raging anger, prolonged anxiety, panic or profound numbness. Extreme sadness is more often mixed with more positive emotions, like nostalgia, gratitude and love - sadness can be bittersweet, depression not so much.
  • Depressive reasoning tends to lead to more extreme, pessimistic and strongly-held conclusions. A non-depressed sad person may feel despair that life has irrevocably changed, and wonder how on Earth they will be able to cope. A depressed person may feel certain that life is and will remain unbearable and they will not be able to cope.
  • Depression is more likely to be unrelenting. A common experience when someone first realises they're depressed is that they're in a situation where they would usually expect to feel much better - in the company of good friends, doing something they love etc., and they still feel completely flat or on the verge of tears. Sad people inevitably feel out of place in situations where others are happy and celebrating, but it may be more possible to temporarily lift one's spirits. In the same way, a sad person may feel that others understand and support them, while a depressed person may feel very extremely alone - feeling either like a burden to their loved ones, or suspicious that others don't truly know or like them.
Although it is impossible to draw a neat line, it is important to consider the differences; sadness can be horrible but depression can be dangerous. Because the lives of people with chronic illness - whether physical, mental or a bit of both - are often difficult, it is easy for both us and other people to mistake depressive symptoms as a normal response to our primary condition or even part of that illness. A bit of a tangent, but an important point.

The Kubler-Ross model is an imperfect model of what happens to everyone coming to terms with loss. Some people skip stages, or experience these stages in a different order and of course, some losses, like those experienced during chronic illness, are ongoing - we sometimes return to stages of denial, anger or bargaining when the loss deepens or we're somehow reminded of loss we thought we'd gotten over.

Sadness is the black hole that the psyche holds out against if at all possible. Whether consciously or not, we tend to go to considerable lengths to avoid the sadness. Unlike the stages before it, sadness gives you nothing to do; denial, anger and bargaining each push a person towards some kind of strategy, whether carrying on as if nothing has happened, raging against the situation or negotiating a reprieve. Sadness acknowledges the finality of loss - even if an illness might improve, there's a certain kind of life which will never now be lived. Sadness is hopelessness and helplessness and as I've mentioned before, the mind will perform all kinds of scary tricks rather that to consider itself helpless. To return briefly to my tangent about depression, I have experienced depression on two occasions and to be honest, neither of these were very heavy on sadness; I was scared and angry (mostly at myself). I was scared of feeling the sadness I could see coming and that fear made me want to die.

However, eventually, sadness is an almost inevitable feature of loss. It is deeply unpleasant, of course, but it is natural and often necessary. While we live in a culture which will, at least sometimes, tell you that anger is useful (and it sometimes is), it is rare to hear that sadness is sometimes absolutely vital in order to cope with loss. We expect people to be sad, of course, but we expect that to happen in an orderly culturally-appropriate manner - bereaved people can find themselves subject to disapproval for grieving either too long or not long enough (or, as is perhaps most common, fluctuating in their grief over time).

Meanwhile, the saying goes that you don't know what you've lost 'til it's gone - that's never been my experience. My experience is that you don't necessarily know what you've got until you acknowledge what other things are gone - that other possibilities that have fallen away. For me, sadness has been the great stock-taking; it shows you both what you've lost and everything you have left.

Whenever I have lost loved ones, I am reminded of how generally very lucky I've been with the people in my life, how lucky I am with those still living, and all the gifts my loved ones give me. Every time I grieve for my health – or the slightly better health I was enjoying a short while ago – I become only more acutely aware of the people and things that make life pleasurable even when I'm stuck in bed all day and asleep for most of it.

This was not always the case, because for many years, I tried to avoid this sadness. If I ever cried about my health, I would cry in fear and guilt; I blamed myself and felt that if things carried on in this direction, I wouldn't be able cope and I would be an even greater burden on the rest of the world. Part of this was because I believed I was useless and worse health always meant a greater degree of uselessness. In my first marriage, my worst health meant an escalation of abuse. But part of this was because I never allowed myself to actually think about what I had lost within that panicked grappling around for answers.

I've been especially conscious of this during the last several months when I have been having a long crappy patch. I'm having to give up my editing work at The F Word. I've achieved very little work of any kind. Small fun projects and social engagements have fallen away. A painless complication caused a bit of a cancer scare - only a bit of one, I was fairly sure I didn't have cancer – which took a lot of energy to get checked out and put me in something of a morbid state of mind for a few days here and there. I got sad.

However, when September arrived and I began to think about the autumn, I was looking forward to the months ahead. And to be honest, for most of the time I've been ill, I would have been in a complete panic. I would be thinking about the theatre tickets I have for the middle of October* and despairing that I might not be able to go, and it will be a huge waste of money and a grave disappointment to myself and other people. I would probably, even this early, start to worry about Christmas – whether I could be better by then, or whether my ill health would mess things up for other people. I would be panicking about the last four months of the year and how little I had achieved this year so far, and how another year would pass without meeting X, Y or Z objective.

And of course my life is much better now than it has ever been, so there are lots of reasons why I can entertain the idea that I may spend a big chunk of the next few months in bed without feeling desperate. But part of it is that I let myself get sad. I never used to do that. I have let myself cry over things I have had to give up. I have let myself cry over the uncertainty. Then I've thought about those things in my life more reliable than my health and felt extremely grateful.

This is not a “So really bad things are good things in disguise” argument; there are obvious tangible ways my life would improve if my health did (and if nobody I cared about ever suffered or died – is this so much to ask?). All I'm saying is that the things that help us cope with sadness are not present until that sadness is felt. I have perhaps been lucky in my life not to be struck with any spectacular tragedy, but in my experience, fear and guilt are a lot more difficult to negotiate than sadness.

I'm getting repetitive with sentiments along the lines of "our culture is pretty messed up about this emotion" - and of course, in a way, this is inevitable. Simplifying the breadth of human experience into particular and thus limiting narratives is kind of what culture does.

Modern philosophies are particularly bad with sadness. There's a whole world of books and seminars dedicated to positive thinking which involves eliminating negative thoughts - or even a bodged-up version of Buddhism which places the responsibility for all unhappy feelings at the feet of those who feel them. Even some versions of Christianity - historically sometimes too accepting of sadness and suffering - now demand that followers face every negative event with a smile because it's all God's plan and those who lament their experiences somehow lack faith.

Disabled people find ourselves in a double bind with this sort of thing. We are expected to be sad people, perhaps especially people with chronic illness who have lost a non-disabled life and who have debilitating and sometimes demoralising symptoms. Many disabled people actively resist that; to be sad is to give in to the problem – to give in to the stereotype. Many many disabled people are encouraged instead to stay in earlier stages of the grieving process; to stay in denial and pretend that things will improve at any moment, to dedicate one's time and energy to regimes and therapies which promise to bring about recovery, to not “give up”, to get angry and stay angry in order to “battle” illness. In other words, we are pressured to live up to another stereotype.

Stigma is also a problem. Some people with physical chronic illness who've been through dismissal and misdiagnosis live in fear of being perceived as even slightly depressed. And many politicised disabled people don't want to be seen as being sad about things they know to be morally neutral facts of their experience - facts for which are automatically met with pity and unwanted sympathy from strangers. It can feel like being sad – or certainly expressing sadness - about our impairments is somehow letting the side down.

On the other hand, sadness is often portrayed as a romantic or heroic characteristic, something which leads a brooding genius to stare out the window, a single tear staining his cheek. We're pretty uncomfortable about depression as a chronic messy illness, but there is a significant element of our culture which regards sad people as deeper thinkers, more sensitive and empathetic - so long as we don't see them crying in public or wandering the streets in dirty clothes.

And often, people with some kinds of chronic illness feel obliged to, to some extent, perform their role as an unfortunate ill person. Not necessarily for sympathy (although perhaps sometimes, for a good cause – you never see anyone raising Awareness in newspapers and magazines with a smile on their face). But more often, I think this performance is simply for peace – fed up of hearing that they don't look or seem sick, or of newspaper stories about benefit fraud whose headlines amount to Disabled person seen having a good time, there's a temptation to show the world that you're suffering.

I know some people are really afraid of their lives looking too good; too comfortable, too happy. And this is also about our unequal society in a more general way; marginalised people of all stripes who seem to be having a good life are those who most offend bigots – as Chimamanda Ngozi Adichie says, "There are people who dislike you because you do not dislike yourself.”

Happy disabled people are, after all, the least deserving of pity and for some people, our only purpose is as objects of pity to make non-disabled folk feel good about themselves. Unhappy disabled people are far less provocative (at least if their unhappiness is relatively quiet and passive).

All this risks undermining authentic psychological reactions to the losses we experience through chronic illness. We are stuck between a tragic rock and a plucky hard place.

It's not that we shouldn't feel sad (or angry, grateful, defiant, whatever) – but that we should give ourselves emotional space to feel whatever we happen to feel. We should reject both tragedy and the triumph over it as personal narratives.

Because I feel sadness is largely something we must ride out rather than something we need to work through, here are some tips for managing sadness - not for curing it, or moving on from it, but managing sadness rather as you might care for a physical wound:

Attend to your physical comfort.

Make sure your diet is as pleasant and nutritious as possible, that you are keeping warm (or adequately cool during those few days of the year when it's a bit too hot), are wearing attractive comfortable clothes and are spending your time in as comfortable a position as you can manage. If possible, work out some appropriate physical exercise and keep to it. When possible, get a little sunshine and fresh air. Don't fight the temptation to sleep unless you have a good reason to. If you have one available, have an attractive person rub lotion into your back.

It's really amazing how much physical comfort effects mood; I remember my mood once transforming after I changed my socks when one had a hole in it - I hadn't really noticed the hole, but the world seemed considerably more bearable in its absence (if you donate items to homeless people or refugees, priorities good strong socks).

Do not try to avoid negative thoughts or universal sadness triggers.

You can't avoid negative thoughts. You can promote positive ones. You can talk about your negative thoughts and get a better perspective on them. Just writing down your negative thoughts can help you begin to sort them out. However, even when negative thoughts are irrational and unhelpful (which, you know, they aren't always), they can't simply be willed away, or drowned out with loud cheerful music.

Folk sensibly attempt to control their exposure to material which upsets them, but this is only possible for fairly specific material - like avoiding graphic depictions of a particular kind of violence or checking whether thedog dies. Trying to avoid things – thoughts, stories, conversations, news etc. - which are sad is not only a futile and miserable exercise, but also a recipe for anxiety. Even if you're not feeling sad or reading about something sad, something may come up at any moment to change that. So you're left feeling on guard and unable to fully engage in anything new or potentially interesting.

I find it helpful to consider passive activity like the music playlists I put together. A good all-round playlist has a combination of fast and slow tracks, upbeat and sadder songs. If you're reading, watching TV or whatever, then sad content will come up even in comedies and children's shows (especially children's movies - goodness me!), and that's okay so long as it's part of a mix. Material which is interesting, where you're learning stuff, or which allows you to have a conversation with other people (now or later) is also very good.

Express your sadness.

When someone you love died last month or even five years ago today, it is entirely socially acceptable (if not always easy) to talk about your sadness. With chronic illness, when sadness effects us can be fairly random – or at least random to other people who don't see whatever events have triggered the spell. However, I strongly recommend trying to tell someone, just so this thing can be heard and acknowledged. Failing talking to a friend, write about it, compose a song, draw a sad picture to get it down in some form. It is when sadness is not expressed that it is most likely to fester and mutate into something else; something bigger and messier. Not just a fresh depression, which is a risk, but also common or garden bitterness and resentment.

Look forward to small events which will happen.

It's probably an instinctive habit for people with chronic illness to look forward to the next meal, the next episode of a television programme or the next chapter of a book, but it is sometimes necessary to do this consciously. When you feel sad about the way your life is, it can feel pathetic to get excited about the small stuff, but the small stuff really is amazing. We live in an amazing world. That's not a reason not to be sad - terrible things happen in this amazing world of ours - but it is a reason to value all the joy we have available to us today. The sun will rise in the morning and the flowers will bloom in the spring. If possible, plant some bulbs.

Keep a record of your gratitude and pride.

This is hard but helps me a lot when I'm struggling at all. Get a notebook or allocate a text file and towards the end of each day, write down something you're grateful for and something you're proud of. It doesn't have to be anything amazing - you might be grateful for having a nice warm pair of socks and proud that you wrote out a birthday card. If you have more things to feel grateful for or proud of, write them all down. This does not cure sadness or any other negative emotion, but it allows you to focus, regularly, on good things you have in your life and good things you have in yourself.

* At the point of publishing, having pretty much resigned myself to abandoning the theatre trip, it looks like it might actually happen. Hooray! 

Thursday, June 23, 2016

The EU Referendum, Hope & Despair

When they announced that there was finally going to be a referendum on the UK's membership of the EU, I thought, "Well, that's it then. We're out."

The European Union is a truly excellent idea, imperfectly - and sometimes badly - put into practice. I felt sure we would vote to leave because it has long provided a political scapegoat for domestic politicians of all stripes - it is rather like an absent wife, who a husband might moan about and use as an excuse for his own inaction and inadequacy. All his mates think he would be so much better off without her, but then one day they actually meet her and wonder how such a woman puts up with a twat like that. Not that she's an angel, mind you. But he is a complete twat.

Whatever happens, the EU will still exist tomorrow and honestly, that is a wonderful thing. My parents have got into their sixties without seeing any outright conflict between the countries of Western Europe - possibly the first generation to do so since people started organising themselves into approximate nations. I grew up at the tail end of the Cold War, but a further conflict between us and one of our close European neighbours has been and still is completely inconceivable, because of an idea borne out of discussions that started at the end of a war which killed around 3% of the world's population. This is an incredible achievement.

But of course the EU is a collection of countries with different political cultures and mostly muddles through, sometimes failing to act on urgent matters, sometimes acting badly. Fairness is an extremely messy question when you're talking about such a diverse group of countries with equally diverse needs and resources. The EU is one of the best political ideas that anyone ever had, but you know, it's not brilliant. It is merely better that we should be part of the effort.

The European Convention of Human Rights has been by far the most successful application of the tenets first written down in the Univeral Declaration of Human Rights in 1948. In principle - although again, far less often in practice - people in the EU have these rights. Our governments can't kill us unless we pose an immediate threat to others. Our governments can't torture us or imprison us indefinitely without trial. They can't interfere with our family life, our religious practices or our private lives in general. I can characterise the government of my country as a twat - I can say pretty much whatever rude things I like about them without fear of interference.

This is amazing. We think it's normal, but it's not normal. It is justice, it is right, but most people in the world do not have nearly this degree of freedom. And it is freedom. Human Rights are often framed as protections - which they are - and of course, most people feel comfortable and comfortable people don't feel they need any protection. But the reason we feel so comfortable is because we are free! And those of us who care most about Human Rights are usually those who are less comfortable or who know that, elsewhere or not so long ago, our lives would be dramatically blighted by governments who would wish to control, silence or eliminate people like us.

And of course, in reality, Human Rights are still abused in Europe, including the UK. There are outright violations like police brutality and abuse, and there are still actual laws on our books which fall short of those sacred tenets. 

And this is relatively young legislation, so there have been some fabulous newspaper headlines about ridiculous cases being brought under Human Rights legislation, with no follow up article when such a case is thrown out of court. But after a bloody long battle, our Human Rights Act remains the most fantastic delicious and brilliant piece of legislation ever enacted in our country.

Whatever happens tomorrow, this is still the case. The EU remains intact, whether we're in it or not and you and I and the rest of the planet will still be better off for that fact. The EU gave us Human Rights and we'll still have them tomorrow. We'll always have to fight our government for them - this one has threatened to scrap ours - because people in power always want more power. The EU has also given us a (metric) tonne of equality and workers rights legislation. It has made us a safer, healthier, freer and more just country. That can't be undone overnight.

Like I said, when they announced the referendum, I thought it would be straight-forward. I have been both gratified and disappointed at how wrong I was. Gratified because an awful lot of people - far more than I imagined - feel as I do or have come round to my way of thinking. Disappointed because the argument has become so ugly. I had imagined any argument would have been about bureaucracy, about future expansion of the EU's powers and about money - how much money goes into the EU and how much comes out. I'm appalled at the racism and hatred I have seen in the last few months. Appalled and frightened.  

Whatever happens, our country needs to do a lot of healing from all this.

We all need to be careful about our bubbles. I've seen a lot of racism (often with a sizeable pinch of homophobia, disablism and misogyny mixed in) because I've seen it on Twitter and because it has been highlighted by anti-racist friends and allies. And I won't say "but clearly, 50% of the country aren't racist" because we live in a racist society and such a statement would wrongly exonerate the other 50% as well. However, many Leave voters will simply not have witnessed this behaviour from their fellow voters. Some will only have seen the debate as reported in a particular newspaper, in the local campaign literature or as portrayed by friends, family and colleagues. Some will not have seen much of the debate at all, but will be voting according to their own values or priorities which have absolutely nothing to do with being scared of or feeling superior to people from other countries and cultures.

So if we vote to Leave, we ought not to despair of our fellow countrymen, women and others. We're in a mess - as I was growing up in the 80s and 90s, there was greater and greater acknowledgement that racism was a problem which decent people tried to combat in themselves and others. In recent years, increasing Islamophobia has twisted that trajectory and in the last few months, I feel that public discourse has taken a firm step backwards. However, whatever happens now, we need to start sorting this out and that won't work too well if we start from the perspective that half of everyone around us is a raging Nazi.

Some people are afraid we're about to swing even further to the right but I think that's the one good thing about this referendum; it answers a question which has been used to stir up anger for the last few decades. That momentum is about to drop away. If we vote Leave, the economy is about to take a dip - even if things work out well long term, this is pretty much inevitable. If we vote Leave, our Prime Minister may resign and there may even be a general election in a few months, but the EU will no long be a factor in that election - why vote for someone offering independence and almost nothing else when that's already been achieved?

That's not to say this whole debacle has not been immensely damaging. It has been by far the most divisive set of political events in my lifetime. It has brought out the very worst in some of us, including some very powerful people who hold significant influence over our lives. The devil is now a regular feature on our TV screens, even though he doesn't yet control their content. 

We will need to deal with all this, whatever. But the EU will still exist, we will still have Human Rights and it would be a great mistake to fall into despair at any outcome of this referendum, given how much work now needs to be done.

Monday, May 09, 2016

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.

Sunday, May 01, 2016

BADD 2016: Legitimate Disability

Blogging Against Disablism Day, May 1st 2016Today is Blogging Against Disablism 2016. Please head over to the main page to read other people's contributions.

Hopefully there is audio available for this blog post:

I like to think that after all these years, I am supremely confident being a disabled person in public. By far my most negative experiences as a disabled person have taken place behind closed doors. I know I have all kinds of subtle and superficial things to my advantage and yet, I’m still self-conscious whenever I stand up in public, or when I’m walking about in my garden. It would be ludicrous to avoid being seen on my feet lest I should confuse anyone who sees me in a wheelchair, but it's tempting. I'm conscious that I might be suspected of some kind of fakery, just because - like most wheelchair-users - I am not completely incapable of walking.

After decades of struggle, disabled people have something of a protected status now; people do still say outrageous things about us, but it’s generally accepted that hatred towards disabled people is not okay. The darkest disablist rhetoric - that we are dangerous, degenerate and undeserving of life is most commonly reserved for fiction; newspaper style guides no longer use words like "cripple" or "psycho" but slip them in when talking about fictional characters.

But there’s a work-around: you can express hatred towards disabled people, so long as you claim that your victims are not really disabled.

This is how the British government have put through a raft of cuts to disability benefits and social care, whilst all parties still insist that they want to provide more for the most vulnerable people. And this is a recurring pattern; an individual, a newspaper or any other organisation can claim to support us, while bashing some of our number, so long as they argue that the people they’re attacking don’t really count as disabled.

It’s not just disablism that operates this way - modern British racists tend to target Muslims, arguing that Islam is not a race, and Eastern Europeans, arguing that if their targets have pale skin, it can’t really be racism. It plays upon the idea that belonging to a minority and not being abused is some kind of special privilege, a special club with highly restrictive criteria, carefully policed in case everyone crowds in and demands not to be abused, harassed or discriminated against.

It is ridiculous, but it remains a powerful and pervasive idea. In the struggle against increasingly negative government rhetoric, the term genuinely disabled entered the vocabulary of disabled activists themselves. Arguments began to be made which portrayed idealised disabled people as hard-working, long-suffering and thus deserving of accommodations and support which had previously been regarded as unconditional entitlements. Arguments became about compassion rather than rights.


Ten years ago, when I first started Blogging Against Disablism Day, I had an e-mail exchange with someone who described themselves as transabled. They felt they were paraplegic in a way fundamental to their identity, but they had no spinal injury . They wanted to take part in BADD but expected I would forbid it. Taken aback, I didn’t handle it brilliantly, but eventually concluded that BADD was open to everyone and anyway, of course, this person was disabled; they had a mental health condition (a highly stigmatised one at that) and any time they used a wheelchair – as they sometimes did, as that was the most comfortable way for them to get around – they were subject to the same experiences as any other wheelchair-user.

I've often thought about why traffic stops for me, a white thirty-something female wheelchair user, when Stephen, a white thirty-something male on a  mobility scooter, has to wait much longer to cross the road. Gender is probably in the mix and I wear brighter clothes and am easier to notice, but it's fair to say that scooters carry a certain reputation. Scooters are popular among older disabled people whose disabled status is generally taken less seriously, as if older people have less need to exist and get around than younger people.

It’s also widely believed that some people who use scooters are perhaps lazy. Of course, it makes precisely no difference why a person rides a scooter or uses a wheelchair, why a person walks with a stick or a crutch or anything else.  I have serious doubts that anyone would use a mobility device, taking on all the stares, remarks, the increased vulnerability and the slight but ever-present risk of abuse or harassment, just in order to avoid walking unless the effort of walking was a very significant problem.

But what if they did? Why would it matter? Can a ramp or an elevator only be justified if absolutely everyone who rolls over it has an absolute and vital need to be sat down? Are content warnings only necessary for people with severe mental ill health? Should there only be subtitles on TV programmes that might be of some interest to deaf audiences?


Apart from those with spinal cord injuries, everyone I know who has become a wheelchair user as an adult regrets waiting so long. For my own part, I had been unable to leave my home for a year. This happened twice: My walking improved for a while and I no longer needed a wheelchair, but when things deteriorated, despite my past experience, I still held out another twelves months indoors. Friends report similar resistance.

Part of this is optimism or denial in the face of declining health - even doctors can be discouraging when people ask for wheelchairs - but part of it is that oppressive idea of legitimacy. If you can walk a few steps – as the vast majority of wheelchair users can – then maybe you can, somehow, get by without one. If your walking might improve then maybe it is better to wait for that to happen. There's a sense that you have to fully deserve a wheelchair. 

This same silly dance takes place with benefit claims, Access To Work, getting a Blue Badge parking permit, sorting out accommodations at college or work, asking for or accepting effective medication and buying any kind of kit or equipment associated with disability. 

For many people, the same thing happens with using the word disabled. Of course some people simply reject the word, but almost every Blogging Against Disablism Day, someone will confess that they're not exactly disabled, but have experienced this thing which seems very much like disability discrimination. People with mental illness - one of the most stigmatised groups of disabled people - seem to struggle with this more than others. 


This is all about power. To question someone’s experience, especially a personal, painful and partly internal experience is a power trip. And people get off on that, the sense that they’ve caught someone out, stuck out their foot and tripped someone up. Stories about liars make good little tragedies; hubris, crisis, downfall. Last Blogging Against Disablism day was slightly marred by an anonymous troll on Becca's blog about the rich life she leads despite being unable to work. The troll's protest amounted to, “You’ve made your life look like too much fun; other people will hate you for it.”

It’s important to remember that ideas of legitimacy are all about power.  It’s important to remember that for our own sake when this stuff comes up. Questions raised can be very personal, but it’s never because we, ourselves, come across as shifty or untrustworthy - it is because other people want to exercise power over us. It’s also important to remember, so we can avoid slipping into this ourselves, talking of those who count or those who don’t count. Too many disabled people find themselves caught up by the hierarchy of impairment, and resort to dismissing those who have less power than themselves; those without a diagnosis, those with other kinds of symptoms, those who live with greater stigma.

Meanwhile, we can do a lot about it. We can remove this power in the way we discuss disability, access and accommodation. We can reject terms and ideas which imply that some who use the language of disability are frivolous and fraudulant while others are legit. We can actively resist a culture which suggests we can gain acceptance by constantly explaining ourselves and our conditions. We can acknowledge disability as a social experience rather that a clinical category. 

Tuesday, April 19, 2016

Blogging Against Disablism Day 2016 will be Sunday, May 1st

Blogging Against Disablism Day, May 1st 2016
I'm putting this year's Blogging Against Disablism Day on its own page (linked on the sidebar), which will also be the place where I compile the archive.

Please head over there, please spread the word and please do write something and report back on or around May 1st if you are able.

Thank you in anticipation!

Wednesday, March 09, 2016

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.

Tuesday, January 12, 2016

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 26th 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.