Saturday, December 24, 2016

Thirty Six

Today is my thirty sixth birthday.

A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.
  • I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience. 
    I model a winter lettuce - a woman with a lot of hair holds
    a lovely green lettuce as big as her head.
  • Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.
  • I had written this article last December but it was published this year and I'm very proud of it.
  • We looked after a lovely old border collie for about a month, which was rather nice.
  • I have had a lump in my armpit for the past six months. After the first two, it triggered NHS Lump Panic, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.
    I model the mermaid's tail - an enormous
    mermaid reclines in a wicker chair with a
    somewhat seasick expression on her face.
  • I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.
  • I wrote quite a few blog posts and a couple of features for the F Word in the first half of the year. My favourite is this about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.
  • I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!
  • It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.
  • I have been writing and editing fiction. Just not nearly as often or as enough as I would like.
  • In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it. 
  • Purple Prose, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.
  • My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.
  • I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.
Snuffles the hedgehog - a fluffy brown hedgehog eats from
a dish of mealworms. She was one ill-tempered hedgehog.
  • We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.
  • Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards. 
  • We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around. 
A young blackbird - a brown bird with pronounced beak and
speckled breast, sitting in a bush with white flowers.
  • We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.
  • Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - which has been considerable, even in very recent times - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.
  • We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with. 
Two happy people at a picnic bench
with a field in the background.
  • As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always performed care for one another in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.
  • It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.
I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.

Friday, December 16, 2016

On Loss & Chronic Illness - Acceptance

[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.]

I managed to do the audio for this but it's not brilliant:

As I've mentioned in previous posts, the Kubler-Ross stages of grief are not about a fixed and inevitable sequence. They are merely common experiences which are likely to happen in this approximate order following loss. However, with chronic illness as with other dramatic and complicated losses, we are very likely to revisit earlier stages.

This is the bad news about acceptance; the first time we feel that we've accepted our loss is undoubtedly a breakthrough, but this is very unlikely to be something that happens once and forever. This is partly why I've been writing about loss and chronic illness a full twenty years since I first got sick. I have absolutely come to terms with what happened back then. I sometimes have to come to terms with what is happening now.

Our dominant triumph over adversity narrative means that those stories about chronic illness which aren't about the search for a cure or heroically raising Awareness are usually about spectacular reinvention: Chronic illness ended my career as a stock-broker but now I'm building a million pound empire by hand-knitting mushroom-warmers.

Reinvention is inevitable but the creation of a new life which somehow mitigates all the problems associated with chronic illness is unlikely. It's a very rare chronic illness which doesn't fluctuate over time. Some are very likely to deteriorate. Some have a good chance of improving to some extent, which is not a straight-forward prospect either. Life circumstances can and probably will change in a way that draws loss back into focus.

It may be you find peace, comfort and creative fulfilment in spending your days hand-knitting mushroom-warmers. But this could happen without making a penny and there's no realistic prospect of replacing a stock-broker's income. It won't get you out of the house or provide the interactions or social standing associated with your previous work. Plus, despite the relative low pressure, knitting good-quality items and selling such knitted items is neither effortless, stress-free nor unaffected by fallow periods.

By definition, chronic illness can't be fixed. But having come to terms with that, it is vitally important to recognise that the life-changing effects of chronic illness cannot be magicked away either. My previous posts have been about how our disablist culture makes it so much more difficult to move through stages of grief when we become chronically ill. This post is about making sure we don't replace all that with some other equally futile struggle imposed by a culture that doesn't want us to let go of this particular kind of loss.

For the first ten or so years of my illness, my energy was focussed on a sequence of rather unhelpful questions:

How can I regain my health?
If I can't regain my health, how can I complete my formal education?
If I can't complete my education, how can I make money when I'm too sick to work?
If I can't make money, how can I stop other people thinking I'm a waste of space?

Ultimately, for me, the answer was the same in every case. At 35, I am in worse health than in my late teens, I have just 3 GCSEs to my name and I've been dependent on benefits my whole adult life. Various adventures in higher education came to nothing. I am occasionally paid for my work but could never do enough to regularly supplement my income, let alone replace the state benefits I receive. We live in a culture where a successful person is generally understood to be someone with a well-paid fulfilling job. By that measure, I am a complete and utter failure.

Of course, I am not and nearly nobody thinks I am. But we do need to talk about status.

Small children are told not to compare themselves with others, but then schools, advertising and often even their parents will ask them to do just that. This only increases as we get older, as we are sold the political myth of meritocracy; the idea that how rich, successful, beautiful and healthy people are is a reflection of their virtues and personal efforts. Or perhaps worse; the idea that this should be the case and if we're not as rich, successful, beautiful and healthy as we deserve to be, then something has gone drastically wrong – either with ourselves or with other people.

People with chronic illnesses don't live apart from our status-anxious society, and circumstances – isolation, frustration, time on our hands – can make status-anxiety even worse than for folks who are busy getting on with other things. The whole game is rigged, but we have even less opportunity than most to even take a punt.

Even folk who are able to work with chronic illness are acutely aware of the scrounger rhetoric which might be applied to anyone who is not functioning at a hundred percent. We hear about the “hard working families” for whom politicians claim to speak (so not us?), as well as receiving the steady drip of advertising and aspirational TV where the most valuable people are wealthy healthy consumers. Even cultural advice around health is status-based; there's a reason New Age magazines promote total silence (bad news for most human brains) as necessary for “true rest”, why newspapers focus on exotically-grown produce your gran never heard of as health-giving foods, when all their nutrients can be found in cheap local veg and cereals. Health is about status too and there's cultural capital to be gained in looking after yourself expensively and elaborately.

Added to this are the dominant stories of tragedy and triumph over adversity which are told about people like us, the supercrip image of every disabled person we see on TV who is neither a villain nor an object of pity. They are geniuses with mental illness, they are blind pilots, they are wheelchair-users who climb mountains. It's bad enough that we can't possibly keep up with our peers, can't work as much as them, can't earn as much, can't do as much in any regard and have far more limited choices around family and relationships. If we start comparing ourselves to the most visible disabled people within our culture, we're in even more trouble.

Of course, we rarely talk about this stuff explicitly; we don't acknowledge the race, so it's hard to come to terms when you have well and truly fallen out of it.

I've not entirely sorted myself out with status. Working makes me feel good. But interruptions to that are frustrating to me not only because I can't do the thing I find uniquely enjoyable and fulfilling. Nor is it even the lack of feedback, which matters too – few people write only for the page. The less I write, the less I feel like a writer. The less paid work I do (which isn't much at the best of times), the less I feel like a writer. The more slowly I move towards getting a novel published, the less I feel like a writer. And of course my identity shouldn't hinge on being any one thing, but there's part of me that feels that if I am not a writer, I am not anything; I am without value. Which is nonsense and I know it.

I know other people who are able to do even less of the things they are passionate about, or people whose health is much better than mine who lack such a central focus. I don't for a moment think less of them; I know I'm extremely lucky that writing was always there. But this is the nature of status-anxiety; we anticipate judgement in situations where we'd never pass any ourselves. Just the other day, my Mum explained her nervousness about a couple of upcoming social events, in terms of her being “just a school secretary”. She explained that being in her sixties and still working for the kind of pay that a school secretary receives suggests someone who lacks the ambition, drive and intelligence to get further and do something more impressive.

So I said, “If you imagine other people think that about you, what do you imagine people think about me?”

And of course, she didn't imagine anyone would turn their nose up at me or any of her friends or family members who are out of work, or who work as cleaners or in supermarkets; she would be positively outraged at the suggestion that any of us were in these positions because we lacked ambition, drive or intelligence. We apply a different standard to ourselves, but every time we vocalise this unexamined, we risk raising the unrealistic standards of those around us.

One of the biggest problems is that disabled people are conditioned to explain ourselves to others in much the same way we would explain ourselves to doctors or the DWP; there's a reason why we answer rude questions when others would not. I have heard friends explain their conditions and their work/benefit status to strangers in all kinds of circumstances where people didn't need to know about either.

Of course, people respond to the information they're given. If you tell someone you're a jet pilot, they will talk to you about planes and travel. If you tell someone you have Lupus and haven't worked for five years, they will come up with an anecdote about an uncle who had Lyme Disease (it begins with L, after all), a deeply personal question about your condition and a suggestion for work they imagine you might be able to do because it doesn't involve a lot of standing up.

This is bound to make you feel fairly crap about yourself, and reinforces the idea that you are set apart from other people, from some mythical normal world of health and success.

I imagine this is made even more difficult for firmly middle class sick people who don't meet any of the millions of working people who readily avoid talking about their jobs because they're either boring or unpleasant (some wealthier people have rubbish jobs, but they're handsomely paid and respected for the tedium). For perhaps the majority of working people, even when it's reasonably enjoyable and fulfilling, work doesn't reflect who a person is, but merely what they do on weekdays to pay the bills.

It is not that people with chronic illness should be ashamed of anything – our health, our work status or anything else - but there's much to be gained from presenting ourselves as who we really are, what we really do, rather than starting all interactions with the excuse we have for not being like other people.

There's one of those inspiration porn memes which features an amputee child running on a race track with the slogan, “What's your excuse?”

And of course it's silly and offensive in ways that don't need to be covered here, but there's a tiny part of me which responds, “I have an excuse. Do I need to let anyone know about that?”

Some people feel they do. As mentioned in my Sadness post, I have come across folks who perform the role cast to them as unfortunate ill person, motivated in part by the mistaken belief that the bullying and skepticism disabled people face is due to ignorance, and enough information can put everything right. I'm not talking about folk who merely discuss their health or even complain about it a lot, but the chronic illness equivalent of those women who perform motherhood – not just talking about or referring to the experience, but placing every topic of conversation within that context, vocalising the most mundane aspects of it, demonstrating how they're doing the right thing (often elaborately and expensively) at all times. Either involves a lot of generalisation; motherhood feels like this, life with chronic illness feels like that. And while the performance of motherhood tends to exude positivity – it's the toughest job in the world but the most rewarding! – the performance of chronic illness is about suffering; it's just the toughest damn job in the world.

It is an ongoing sick note to the world and of course, that answers the issue of status: I would be doing amazing things if I was not ill, but instead I'm doing an amazing job of being ill, fighting it and documenting it to inspire and inform others. And this can be really difficult for the rest of us to be around.

It contributes to a culture where disabled people are defined by our impairments and non-disabled people believe they have a right to expect a moving and detailed account of our lives and suffering – non-disabled people get to keep the power. Bullies get to keep on bullying.

Yet beyond this, even though I am acutely conscious of these politics, when I meet with such performances, I find myself doubting my own perspective on illness. I've always managed to be reasonably upbeat but at this point in my life, I find myself particularly blessed; I am married to Stephen, I have some great friends, my family relationships are the best they've ever been, I love my home which has a garden and the garden has hedgehogs living in it. I have some big health-related frustrations impact on my work – especially this year – and upsets and worries occur from time to time, but otherwise, I'm really enjoying my life.

Stephen has always enjoyed the Eurovision Song Contest and because I'm so cool, the first time I watched it with him, I kept thinking, “I can't be enjoying it this much. Not really. There is nothing cool about this. Maybe I am only enjoying it ironically?”

And in the same way, when confronted by people whose mission it is to let the world know, in all their interactions, how an illness like the one I have has ruined their lives, there's a part of me that thinks, “Maybe I'm kidding myself? Maybe it is impossible to be as content as I think I am?” After all, these folks have much of our culture on their side; we're not supposed to be happy.

But louder than that, there's a part of me which thinks, “Maybe other people think badly of me, because I don't do this stuff. Maybe when I'm not around for a while, people just think I don't care about them, that I'm busy with other things. Maybe people look at how little I achieve and assume I'm just lazy. Maybe people think I'm a scrounger. Maybe people think I don't look after myself properly because I don't detail all the boring ways I look after myself.”

And of course, this is why people do this stuff in the first place; this performance of illness is, to some extent, what our culture expects of us. If I was a character in a book or a film, the first thing you'd know about me was my medical history; my character or people close to me would discuss it at length. You would see me gritting my teeth in pain, taking medicine, lying about looking unwell and so forth. You would see this because my character would be all about pathos; my illness would function as a reason to feel sorry for me and for those who care for me.

In the face of oppressions, big and small, some folk imagine that sympathy will hold back the dogs. In reality, there's no way round the fact that some people will pass judgement on me given the society I live in. It's very rare these days that anyone expresses anger towards me, but when they do, they always manage some snide remark about my health or the way I manage it. No amount of information is ever going to shut that down.

Avoiding these kinds of people and this kind of thinking is as essential to acceptance as avoiding folks who constantly talk about how fat and hideous they are and what diets they're on when you're trying to feel okay about the size of your bum.

The question I should have asked much sooner than I did was

How can I live the best possible life I can within what limitations I have?

Which sounds obvious and easy enough, but is in fact a tremendously complex question. It demands we look at what our actual limits are - and not in a pseudo-existentialist, the only limits are the ones we impose upon ourselves kind of way. Our health is not only a limitation, but most likely a changing limitation. We all need some money so we need to source this, whether through a new way of working, wrestling the benefits system, relying on a working partner or finding some kindly eccentric benefactor. We need food, clean clothes and to live in a reasonably sanitary environment, so we need some way of making sure that happens. If we are a parent or a carer, we need to make sure that parenting or caring carries on. All these limitations are real, often quite messy and prone to change even when our health doesn't.

And then there's the matter of what is best. If there's any left after we have secured our basic maintenance, what should we spend our time and energy on? The thing that's most fun, the thing that's most fulfilling, the thing that's most useful to the world or the thing which makes us most comfortable materially?

Of course, these are not chronic illness questions, but being alive questions. Everyone has limitations. Everyone. Some people undoubtedly have much easier lives than you or I, but very many people who don't have chronic illness nevertheless face a lot of limitations and complexities on their particular journeys through life.

There's a tendency for people with chronic illness to feel set apart from some mythical well world where everything is straight-forward and I understand that – I have had conversations with friends and family where it's taken me less time to say what I've been up to in a month than they take to report on a single day.

However, acceptance means moving on from the sense that our little piece of the world has stopped turning while everything else carries on like nothing's happened, that sense that separates us from those with different experiences. In the same way, when we finally come to terms with a death, the imposing sense of that empty chair eases; the chair remains empty, but it no longer dominates the room.

Again, this is complicated by the fact that acceptance isn't a happy ending we arrive at just once – with chronic illness, we are likely to experience loss again, our world will once again stall on its rotation. But having reached acceptance already, it gets easier to ride out our inclination toward denial, anger, bargaining and sadness and get it turning once again.

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.