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.