I'm putting this year's Blogging Against Disablism Day on its own page (linked on the sidebar), which will also be the place where I compile the archive.
Please head over there, please spread the word and please do write something and report back on or around May 1st if you are able.
Content warning for brief references to self-harm, domestic abuse and all variety of disablist nonsense.
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:
The perfect management of a fluctuating chronic illness is impossible. So long as the precise nuances of your body and brain remain unseen, you will overdo it. You may sometimes be over-cautious and do less than you could. And you won't really know what you've done until it hurts a lot more.
Beyond this, you sometimes do too much because there's something you want to do, or get done, or because you're frustrated, angry or anxious and you can't stand to stay still with that feeling.
When I first began to realise this – that things would not improve just by pushing and pushing – I was filled me with rage towards myself. I would swear at and curse myself out loud. I was disgusted with a body which refused to co-operate. I injured myself and made half-hearted attempts on my life. It wasn't that I was sad or disappointed in myself; I was livid.
At this time, I began talking to the man who would become my first husband. This person carried a hell of lot of red flags, but having tricked myself into ridiculous hope, I no longer trusted my instincts. One of these red flags was the fact that this man in his mid-thirties was angry all the time at pretty much everything, even with a teenager he was talking to on-line. However, I felt crap about myself, and this anger made more sense than the kindness and support of my true friends; I figured they must be deceived about me, while he was not.
Our culture isn't great when it comes to extreme negative emotions like sadness or anxiety, but it's pretty atrocious when it comes to anger. For one thing, there is a profound social hierarchy in who is allowed to express anger. Rich white powerful men are allowed to shout at and mock their colleagues in public and yet remain in charge of us all. Another can physically assault his subordinate and maintain much of his public favour.
Women are taken much less seriously than men if they show anger and while many stereotypes about women of colour are about being submissive and demure, the first sign of anger can flip this on its head; the eager-to-please East Asian becomes the Dragon Lady, the submissive Muslim stereotype becomes a terrorist and so on. Our culture is particularly wary of angry black people, particularly black men. This makes sense in terms of our imperialist history; it's a good idea to be afraid of anger in people you're trying to control or crush.
Disabled people are another category who are not supposed to be angry except in very specific contexts: a young white man who has been physically injured during heroic activity (war, fire-fighting, police work etc.) is allowed to express anger if he channels it into successful rehabilitation. Almost anything else and you're heading into disabled villain territory.
This is one reason that I've struggled to write about anger and loss. Anger is a natural stage of grief and recovery from any kind of loss and trauma – it's okay for anyone to feel angry about their experiences and the injustice in the world. In fact, to be angry about the hurt one has experienced is often a first step in valuing oneself and one's safety.
For people with chronic illness the problems are fourfold:
You're not supposed to be angry. When people admire a sick person, they say, “They're really suffering, but they never complain!” Meanwhile, you're supposed to respond to those around you with gratitude that you're being looked after (even when they're not looking after you) – you're certainly not supposed to get angry with them. If you get angry, you might be left entirely on your own when you literally can't survive without help.
There are some situations where showing the slightest frustration with someone who has power over your life – a medical professional, an employer you're negotiating access with, someone from the benefits agencies – can have you pigeon-holed as a trouble-maker. This is especially the case for people with mental ill health, who can even acquire new diagnostic labels for arguing with their doctors.
Competing with fear, anger might be the most exhausting emotional state to be in. Your body prepares for physical conflict, your heart races, your breathing becomes shallow, your muscles tense and blood is diverted from normally essential things like digesting food. Anger can make a healthy person feel pretty sick. For sick people, the physical tension of anger can cause a lasting increase in pain. It can cause gastrointestinal symptoms that go on for days. And while sadness drains energy like a hole in a bucket, anger pumps it out of you.
In chronic illness, anger often has no place to go. Sometimes, you're literally stuck in a room either with its source or completely alone, with no way of addressing or venting it. Sometimes it's impossible to even talk about it or write it down. Gobble gobble gobble.
As well as the anger associated with the multiple losses involved in chronic illness, we have plenty else to be angry about. Disablism, discrimination, poor access, crap from benefits agencies. Unhelpful, sometimes cruel remarks and behaviour from family and friends. Plus misdiagnosis, medical bureaucracy, abuse and negligence are immensely common – not because doctors are a bad bunch, but because having a chronic condition means we see dozens of them over the years and are bound to encounter the occasionally horror. Trouble is that horrific doctors can cause lasting damage.
A particular trouble with disablism is that often we experience injustice which simultaneously insults us personally and denies our loss. When the DWP decides we can do things we can't, when folks express envy that we don't have to go to work and when politicians talk about encouraging us to do the right thing, they're not only implying dishonesty, laziness or other character flaws on our part, but they are denying the limitations we have and the things we've lost. For people with conditions that involve suffering, they are denying this suffering.
This is one reason why, unhappily, a lot of disability politics has gone Tragedy Model over the last six years, with folks arguing for their basic rights, not on the grounds of the intrinsic equality of all people, but on the grounds of compassion.
A cousin was telling me
about a colleague who had a condition a bit like mine,
although much less severe – this lady was still in full time work,
although it was an increasing struggle. My cousin had explained to his colleague about me and my medical history. He said,
“I told her, it must have been so much easier for you. She's in her
forties with a job, a couple of children and a mortgage, whereas you
were only fifteen and didn't really have anything to lose.”
Thus I find my entire
identity reduced to that of sick person – all I ever was or am or will
be. This happens quite a lot. In hospitals and doctor's offices, I am
a collection of symptoms. I've currently got my ESA form-filling file
open (not for fun - I have a form to do); 6000 words about the
intimate details of my daily life. And it has nothing about me in it, no whisper of who I am,
what I care about or what I'm good at.
In the media and the mouths of
politicians, folk like me (especially those of us who have few formal
qualifications and have never had a full-time job) are talked about
as if we are blank people without interests, skills or experiences -
either to be filed neatly out of the way (those who need the most
help) or to be pressed, moulded and trained up into real coloured-in
people (ordinary hard-working families).
The temptation is to
respond to this stuff with protests of what might have been – the dominant Tragedy Model narrative; the way we are taught
to tell our stories. My cousin's colleague wasn't going to lose her
children and was unlikely to lose her job – things I had lost before I even had a punt at them.
I might have had a glittering career, made a profound contribution to
the world with whatever path I took, earned a fortune and been
someone my cousin boasted about as opposed to someone whose story can
be shared as an example of a non-life.
But that's a game I'm
bound to lose. For one thing, it's nonsense; I would
have had a very ordinary life, working jobs I liked and jobs I
didn't, with spells of unemployment in between. I know healthy people
who travel through life clutching onto a narrative of what could have
been if only they'd been in the right place at the right time, and
it's both sad and deeply unbecoming – there's always the
implication that such people are somehow better than the average-wage life they actually have, thus somehow better than their
colleagues, their friends and neighbours and most certainly people
like me.
It's also a story
of disabled life which focuses on the contrast with the non-disabled
life which never happened. And although I'm writing about loss, I am not
prepared to escape the identity of sick useless person who would
never have amounted to anything by signing up to be a non-disabled
person trapped inside the life of a disabled person.
I often see people with
chronic illness on social media declare that illness destroyed or
ruined their life, stole their youth or future - sometimes in the first person plural; our lives, our youths, our futures. I'm very lucky this didn't happen to me. Illness helped shape a life which was different to
the one I had expected. This life features a degree of
ongoing loss and frustration because I am a sick person living in a
disablist world.
When I was fifteen, I
had a hell of a lot to lose and I lost a very great deal. But I'm far more upset now by what I'm losing as a thirty-five year
old. I have friends and family I hardly see - right now my 92 year old Granny is in a bad way and I'm not well enough to visit. Weeks pass when I can't leave the house and there are all kinds of social and cultural events I can't join in with. I'd like to have a dog.
I have acquired talents, expertise and experience which I am
only able to put to limited use. Right now, I don't fantasise about having more money, but I deeply envy people who have jobs that fulfil them and make them feel useful. I know full
well – because I work hard myself – that no activity is
universally pleasurable and fulfilling. But I envy the opportunity to
spend more than a few hours, randomly distributed across the week,
doing what I do well.
And this is okay. I can
and do live with this in much the same way as I live with the loss of
loved ones I long to talk to again. It's a recurring pang, not a
bleeding wound. It doesn't ruin my life.
However, I struggle
when this loss is denied.
In social justice
circles, I often see arguments in favour of anger. The thinking goes
like this: women and minority groups are discouraged from showing
anger by the very same culture which gives us all kinds of reasons to
be very angry indeed. David has written
about it just this weekend. Learning that it is okay to
feel angry can be a first vital step of our resistance.
This is sometimes
extended into a command to get angry and stay angry, to express
anger. Which is all very well if you're lucky enough to be able to
channel your anger into something useful and productive without
harming yourself or others. It's pretty hopeless if you're lying in
bed, unable to do anything yet unable to sleep or rest properly
because you're seething with rage.
So I have a different
philosophy. It is okay to feel anger. Anger is a natural and important response to
loss, trauma or injustice - if you try not to feel it, you're likely to run into
trouble.
But having felt that
anger, it really would be wise to seek out a way to open that clenched fist and let it go.
Another problem with
anger – and its sister, guilt - is that it demands legitimacy. We
might feel sad about lots of things, and sometimes feel foolish for
feeling sad, but with anger, we can repress it because we think we're
wrong to be angry, or get lost in it because we have a right be
angry; someone or something deserves our anger, and us being angry is
just.
But other people don't
live in our hearts; nobody is punished by our anger or comforted by
our guilt.
Meanwhile, the
behaviours we adopt to cope with anger can be habit-forming and
eventually dangerous. Various forms of explosive behaviour can cause
an addictive release of endorphins, including things we do to
ourselves like self-harm, starvation or over-exercise, as well as
things we might do to other people and objects. Ranting on the
internet at nobody in particular can be a fairly benign way of
releasing all this unhelpful adrenaline, but it can do the same
thing.
All angry behaviours are likely to escalate. You know that thing about how swearing is a great painkiller? Well, that's true, but only if you don't usually swear and you're not often in pain. If you're always stubbing your toe and responding with elaborate blasphemy and curses, they won't be working too well – you have to swear harder, louder and more disgustingly, in order to have any effect.
Behaviours don't actually have to feel good in order to become habits; they just have to provide relief.
This is why Twitter is as it is - of course, Twitter is awash with love and kindness, but there are folk about, of all stripes, at all points on every political spectrum, who are permanently pissed off. Many of those people have something very real and horrible to be angry about, but without a break from it, it's only going to get worse.
When I used to belong to illness-specific support groups, I saw the same; some folk were angry and supported one another in anger to the extent that they believed that their illness was by far the most stigmatised, that people without their diagnosis couldn't understand them, that some people with their diagnosis were giving the others a bad name by having different kinds of symptoms and limitations. Some wholeheartedly believed that other people's willful neglect was keeping them ill; that if only enough attention was paid to their condition, a cure would have been found years ago. None of these people had had an easy time or been treated with the full respect and care they deserved and for a few, the actions of others had undoubtedly damaged their health. However, the belief that other people have ruined your life (because such people did see their lives as ruined) is pretty much impossible to resolve.
It's going to be recurring theme in these posts about loss, but the disability rights movement helped me stop being angry with myself. Understanding the socially-constructed nature of disability doesn't stop me wishing I had less pain and more energy, but my body is off the hook in some major respects: I would love to be able to walk about, but the mere fact of having to move around on wheels should not mean I'm profoundly limited on where I can go and what I can do. Meanwhile, to operate with any sense of blame and innocence when it comes to ill health is to play into hierarchies which oppress us all.
It helped a lot when I stopped being around angry people. To avoid other people's anger altogether would be to avoid anyone in pain or having a crap time and I don't mean that at all. But for a long time, I was attracted to misanthropes. I didn't hope for love (or trust it, because it was always there somewhere) so I sought toleration; I was attracted to people who hated everyone but begrudgingly tolerated me. It felt like the safest kind of special status. Thus I lived with domestic violence for over ten years, with someone who was even angrier with me than I was.
However one great lesson I learned from the aftermath and recovery from that is about trauma. Trauma victims and survivors frequently blame themselves for what they've experienced because the psyche abhors helplessness; it is far easier, psychologically, to take on responsibility for things that were far beyond your control than to admit to yourself that you had no real choice. This is evolution; organisms that maintain undying faith in their power to avoid or escape perilous situations are more likely to survive.
Of course, in adult abusive relationships, there are choices, but greatly diminished ones. In illness - also a traumatic business - there are choices, but again, these are diminished. You can't see what's ahead. You can't stop the world. You can never avoid risk. Your health is complicated and sometimes one aspect must take a hit on behalf of another. Some things matter more than health.
But most of all, again from listening to others on disability rights, I learned that my health is a morally neutral fact. If I am less well, it matters only as much as it matters to me. I can only let anyone down if I make a promise and choose the day before my presence is needed to experiment with the unicycle. This is not something I often do.
Managing anger with things outside myself is all about identity. We talk about identity a lot, not because it makes us feel special or interesting, because these are things others reduce us to and we wish to resist this reduction. Disengaging from these identities, (insisting, "I don't consider myself disabled!"), just doesn't work for most of us. However, because we find ourselves reduced to a disabled person, a wheelchair user, a benefit claimant, a psychological services user and/ or a person with chronic illness, it's important to hold onto everything else we happen to be.
So, there are three things I try to remember about all the crap we receive as people with chronic illness:
I'm not alone in this experience, even if I'm alone at that moment in time. Someone else has been through this. Some experiences (like having trouble with benefits agencies) are almost universal. Some experiences come down to tremendous bad luck. Some people are victimised because of a combination of attributes which our culture struggles with, e.g. having a mental illness and a physical impairment, and being working class, a person of colour, LGBT, fat etc..
This crap is all about other people, fear and power, and the systems they create. Discrimination is very rarely motivated by conscientious belief. The nonsense disabled people have from benefits agencies is not about genuine mistrust (although that's how it manifests) – they simply wish to maximise the number of people who, overwhelmed or disheartened, will give up before they get the correct award. Politicians create narratives about hard working tax-payers' and benefit scroungers in order to distract from the origins of our economic problems. Right wing politicians are sometimes very good at advocating for their constituents with benefit problems – people can and often do believe two things at once.
Street harassment, the bullying remarks of colleagues, family and other acquaintances are mostly about power and fear. These people are bullies (whether they do it all the time or once in a blue moon) and the issue is about them, their insecurities and anxieties. They say stupid things relating to our health because they can - because we live in a culture which treats disabled people as charity cases, demanding proof of our deservingness, legitimising speculation about whether our impairments are exaggerated, badly managed or taken advantage of.
This stuff is never about who we are. None of us will never be everyone's cup of tea, but people who know and like us will, of course, be largely disinterested in our health, how we manage it, if and how much we work. They will be interested in us, what we're interested in, what we're good at, what we're passionate about. And when I do my own thing, exercise my skills, listen to the music I love etc., I am not anything like the person those bastards want me to be.
None of this is to minimise the scale of injustice – all these things applied to the disabled people entering the first gas chambers, along with everyone else who ever ended up being abused, tortured or killed for some aspect of their identity. The fact that prejudice is rarely authentic – that is, it is rarely arrived at through any kind of conscientious rational thought process – doesn't make it any less dangerous.
This is in no way a sticks and stones argument. Sometimes we have no choice but to fight this crap. Other times we have to get away from it as soon as possible.
However, the more we keep hold of ourselves - our best complicated selves with our passions and talents and foibles and that birthmark that looks like one half of Jedward (but which, you wonder, but which?) - the better equipped we are to escape being utterly consumed by the rage.
Content warning for brief references to self-harm, discussion of bereavement and psychological abuse.
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:
For the first two years
I was sick, I wasn't in denial so much as ignorant then optimistic.
My health was up and down, so I assumed that very soon, things would
pick up, and up and up and up. All the strategies I was given were
about resisting my illness. Do as much as you can. Keep going. Have a
go, even when it hurts. Stay positive.
By the third year, it
had gone on too long. The idea that I would not be going to
university at the same time as my peers was unthinkable. It wasn't
that my academic career had ever been central to my identity before
then, but all my other identities had dropped away. My greatest passion - acting - was now impossible. My role in all friendships and
within the family had greatly diminished. I couldn't sing more than a
few lines. I couldn't make art. I couldn't write stories. I was
struggling even to read.
All I had left – and what my parents were most worried about, the one thing, apart from my health, that others asked me about – were my studies. I didn't have anyone breathing down my neck on this, but I felt an immense pressure. If I stayed sick, I was going to let everyone down.
Here are some
ridiculous things I did in that third year:
I went from studying a
single GCSE to trying to cram two A-Levels into one year. If you're
not familiar with the English and Welsh education system, that's increasing my workload by about five times, without any improvement in health.
I began to write the
story of how I got better. In the past tense. When writing anything was a tremendous effort. Which is why I only used up the first few pages of the
lovely new notebook I'd chosen to write in. Such a waste!
Most ridiculously, I
asked my parents for a new bicycle for my eighteenth birthday. Before
I was ill, I used to cycle all over the place. I'd had a few bikes
before, but never a new one and I had absolutely never bought or
asked for anything which I didn't then use. Thus I reasoned, my
capacity to balance on a bicycle seat and peddle with my malfunctioning legs
would just have to improve accordingly.
All this may sound
daft, but I want you to imagine this in a bad movie. A sick girl who
has significant trouble walking buys a bicycle because she's
determined she'll recover to a point where she can cycle again. She
begins to write the story of how it's going to happen. She takes on all the work she needs to get her into university (Cambridge said they'd
consider me with just two A-Levels, given the circumstances).
She has to get better.
She deserves to! She has hope in the face of dwindling odds. This
girl isn't a fool – she's a hero. The final scene of the movie has her either
peddling off into the sunset or with a shot of the pristine unused
bicycle, propped up against her gravestone.
I didn't die, though my
health got much worse and I entered a darker, uglier level of self-doubt. Maybe I was
kidding myself about trying so hard, when really I wasn't? Maybe on
some unconscious level I wanted to be ill? Maybe I didn't want to be
ill but a part of me was making myself ill just to spite myself and
cause distress to everyone around me? By this point, I was cutting
myself and stockpiling meds. Soon after, I got together with my
first husband, who hurt me even more.
.......
On the 26th
August this year, I will have been ill for twenty years. I'm not upset about that, but I've been thinking about it and want to
write something about loss and chronic illness. I want to use the Kubler-Ross model of coming to terms with loss which, though
imperfect, covers all the bases; the process of denial, anger,
bargaining, sadness and acceptance.
Denial is a psychological defense against very difficult facts, but it's almost impossible to sustain on your own. Usually, when a loved one dies, it can take a few weeks at least to fully comprehend the fact - it's healthy the pain doesn't come at once. But sometimes, someone is informed of a death and simply refuses to believe it. This usually lasts moments, or minutes and occasionally a few hours. Then it shifts, because however gently they are treated, everyone around them is contradicting their belief. Abuse victims can remain in denial about the nature of their relationships for years, because there's either no opposition – other people smile and nod when they say everything is fine – or that opposition is discredited by the abuser.
Meanwhile – and this will be a recurring theme as I write about loss – with chronic illness, you can't just come to terms with these facts in one dose, even it is spread out over months. There will be other losses, relapses and complications, - even remissions that stabilise far below the point you hoped for. There may be points where you realise you have to drop some work you're doing, studies or hobbies, a point you realise you can't have the family you'd like or can't play your preferred role within your family. You'll miss events - weddings, parties, Christenings etc. - which will never happen again. You may lose friends, when your illness gets boring. There are all kinds of ways which you won't get to be the person you wanted to be - not because you chose to be someone else, but because of illness.
Of course, everyone experiences loss, but the loss associated with illness complicates regular loss - if only I wasn't ill, things would be different, maybe this might not have happened, maybe this would be easier. I wasn't devastated by the death of my maternal grandmother last year, but the fact I was too sick to attend her funeral sent me into a couple of months of emotional disorientation.
Fortunately, you don't have to mourn for the whole thing at every set-back, but loss is dark pool which settles for a while, only to be disturbed again; sometimes a mere ripple, sometimes a splash.
After that terrible third year, I never again counted so completely on my health improving, but there would be other times I overestimated my (usually deterioating) health and stamina when I really should have known better, times when I worked on the basis that my good days would be my normal days from now on This would always coincide with desperation, self-doubt and external pressure.
.........
As soon as I started to think about writing about chronic illness and the Kubler-Ross model, I noticed how our culture discourages people with chronic illness from getting to that final phase of acceptance. Our culture actively encourages denial (as well as anger, sadness and bargaining especially). As I say, it's almost impossible to maintain denial on your own.
I generally enjoy my life very much. I'm writing about loss, but loss is part of life and doesn't stop it being mostly great. However, sometimes I'll have this conversation when someone implores me to keep positive. Not that they think I'm not making the most of life, but because I'm not highly invested in the prospect of getting better. I'll hear that I shouldn't “give up” - I should keep hoping for a cure, pestering my doctors for tests and experimental treatments, trying alternative therapies, restrictive diets and so on. I hear this both from other sick people who have got themselves a bit stuck, and from healthy people who really have no concept of how incredibly short life is and how very much shorter life is if you have to rest more than half the day.
However, I have many advantages when I roll my eyes at this. Meeting the disability rights movement made such a difference; it made my illness personal and private, separated out the things I can attempt to address (physical access, social attitudes etc.) and released me from the sense of obligation to fit our culture's model of a deserving sick person.
Some people are much less lucky and get stuck
on denial, even after years of illness. A few times, I've come across
people who are convinced that they have found the answer and –
understandably, altruistically – wish to share the good news with
other people. In the worse case, I was put in touch with a friend of
a friend, a man in this thirties whose parents were spending twelve
thousand pounds a year on a single nutritional therapy regime. Twelve
thousand pounds – it crossed my mind that even if this
worked and I regained full health, I could probably never earn enough
to pay for it. But of course, it didn't work.
He'd been on this
regime for a year or so when the therapist used some kind of mystical scanner and declared
that the illness had left his body. Completely cured, his body and
immune system remained weak and just needed building up again (with
this ongoing course of expensive therapy, funnily enough). But as our
conversation progressed, I realised that he hadn't really seen much
improvement at all; this weakness was basically all the symptoms he'd
had before, only with a different explanation.
Someone who has never
encountered this might think such a person would have to be terribly
gullible, foolish and perhaps a little unhinged. He wasn't. He was a
pleasant, sensible father of three who had worked as a teacher before
he was ill. He just couldn't see a life where he didn't get well. Given their financial investment, his family obviously had the same imaginative block. It wasn't that he was pretending to be well - he still wasn't able to work or walk significant distances – but
having been told that he was well, he chose to believe it.
I describe this as the
worst case because, well, twelve thousand pounds a year. But there
have been others and it's always tragic. You generally lose touch
with these people, not because of arguments (you don't argue with this) but
because it becomes impossible for them. How can you face people
around whom you evangelised about a cure, when two or three years
later, you are still demonstrably unwell?
But of course, in terms
of stories, our culture loves this stuff. Illness is something to be fought - Beechams will help you fight a cold, David Bowie just lost his battle with cancer. This is all denial; There is no cure for the common cold - if you have anything but a mild cold, you will feel rotten and infect people around you. Whatever courageous attitude Bowie adopted towards his illness, he died because of a great collection of circumstances which amount to bad luck - had he survived, he wouldn't have fought it off, but merely been luckier.
Hope is a great thing and looking after one's health is entirely sensible.
Placing faith in the impossible (or even the rather unlikely) is a waste of life.
.......
There's one
more point to be made about denial, which makes it unique among the
phases of grief: other people will try to get in on the act for sinister purposes.
Naturally, some folk do go into denial about the deteriorating health of a loved one.
They desperately want there to be a simple solution, and for things
to go back to normal, so they pretend that's going to happen. This can cause a lot of stress, but it's unlikely to last long.
However, the very first
thing a person does if they wish to bully, undermine or control any
disabled person, but especially one who is sick with subjective
unseeable symptoms, is to cast doubt on their impairment, speculate
that they could try a bit harder, that their account of things is
inconsistent, that maybe there's a part of them that is seeking
attention.
And these two things –
someone profoundly distressed about another's state of health, and
someone exploiting the opportunity to exert power over them – can
be easily confused, with disastrous consequences. When friends, family, quack therapists and occasionally even medical professionals get up to that crap, a sick person can be easily dragged into
that very dark and ugly place I described earlier (Is it me? Am I doing this to
myself?).
Again, this cruelty is in
our culture. This is what the benefits agencies do – they
endlessly question perception and imply dishonesty in rock solid cases. This is what newspapers do when they complain about scroungers.
People who do this to their own family and friends aren't in the
least bit original, but their message must not be mistaken for love or concern. This is all about power.
My top survival tip –
not just when it comes to chronic illness, but life in general – is
to trust yourself, your feelings and your experiences. This doesn't
mean experiences mean what you think they mean (honestly, it was just
a satellite – if you look at the sky for long enough, you'll see
dozens), or that you should act on all your whims. The mind can play
tricks on you, and you may have irrational thoughts, but you almost
certainly do know roughly what's going on with you.
On some level, I knew I
wasn't going to ride a bicycle again any time soon. But I
was trying to defy my own reality. When others attempt to defy your
reality on any matter - not to merely disagree with you, but suggest that what you feel is not what you feel - you need to give them a very wide berth.
Freedom of speech has never been the freedom to speak without consequence. Freedom of speech means freedom from interference, harassment, intimidation, imprisonment or violence. But speech, like anything we do, has real life consequences. There is no freedom of speech if people are allowed to talk and others are not allowed to object to what they've said.
This weekend, famous philosopher, author and university professor Roger Scruton was
relegated to the obscurity of the BBC News website (link to text) and BBC Radio 4 (link to audio) to
talk about freedom of speech. He seems about to explore the potential ills of criminalising hate speech before meandering in an entirely different direction, concluding.
“Of
course, we have moved on a bit from the Middle Ages. It is not the
man who is assassinated now, but only his character. But the effect
is the same. Free discussion is being everywhere shut down, so that
we will never know who is right - the heretics, or those who try to
silence them.”
I
was obliged to study Roger Scuton's work as a young philosophy
student, so I feel qualified to translate:
“Of
course, we have moved on a bit from the Middle Ages. Outspoken men I
personally relate to don't get assassinated, but instead the views of
other kinds of people are heard alongside ours, which can make us
look ridiculous. Free discussion is everywhere, and views like mine
face powerful and articulate opposition.”
Freedom of speech means that Roger
Scruton should be free to express his views without harassment, intimidation, violence and so forth. He has arguably earned the right to have far
greater access to public platforms - television appearances,
newspaper articles and so on – than someone like me. I might
disagree with pretty much everything he stands for but that's not a
problem – here he is, right now, helping me explain an idea to you. Thanks Rodge! .
What
Roger Scruton is absolutely not entitled to is to express his views
without criticism. For example, he describes how homophobia was invented (as most
words were at some point) and is used to ruthlessly attack, um, homophobia:
“The
orthodox liberal view is that homosexuality is innate and guiltless.
Like the Islamists, the advocates of this view have invented a phobia
with which to denounce their opponents. Deviate in the smallest
matter from the orthodoxy, and you will be accused of homophobia and,
although this is not yet a crime, it is accompanied, especially for
those with any kind of public office, by real social costs. “
And
yet, here is Roger Scruton, on the BBC News website, implying opinions that are already in the public record; to his credit, he overcame much of his earlier prejudice, but he still objects to same-sex marriage or adoption. And yet this weekend, he was still being published on the BBC News website in a piece to be broadcast on the radio. When Scruton speaks of “real social costs”, I can only assume his lesbian friend didn't invite him to her wedding.
(Incidentally, Scruton is the co-author of the articleSame-sex marriage is homophobic. So he's right about at least some people abusing the word homophobia for the sake of their own particular arguments.)
This
is how history works. When I was a kid, homophobic views were widespread and
freely expressed. In 1989, Scruton himself wrote that society was correct in instilling a revulsion of homosexuality in children - some of his contemporaries said and wrote far worse. Section 28, which effectively prohibited the discussion of homosexuality in schools, was not repealed until four years after I had left school. When I was growing up, someone who supported
same-sex marriage had the right to say so – they certainly wouldn't
have been arrested for it - but they would have struggled to get any kind
of platform outside LGBT magazines. Gay and bisexual teachers, let alone people in
positions of more significant power and status were still frequently
closeted. That's real social costs.
But our society had an argument and the argument was won. Not that we have achieved consensus, but most people either support or are indifferent towards same sex marriage. Conscientious people like Scruton have found at least some of their prejudice to be intellectually unsustainable. This is
because gender doesn't make any moral difference to sex, romantic
partnership or the creation of families. Homophobia – including, violent homophobia – still exists within our culture, although it is much more often subtle and implicit. Scruton's views are in the minority. He still has a very loud voice.
He just can't expect such a great applause whenever he uses it.
To say so isn't silencing him. To bombard him with abusive messages would be silencing. To threaten his peace or his person
would be silencing. To hack the BBC News website and take down his
article would be silencing. He's not being silenced.
Scruton may well have been harassed about his views, but he doesn't describe this. He doesn't describe any specific negative effect of speaking out until he arrives at Nobel-prize winning biochemist Tim Hunt. Like the rest of us, Hunt was not entitled to say whatever he liked without his words having consequences. His character was not
assassinated – he made a fool of himself, just as surely as if he had turned up to work drunk in his underpants. Nobody accused him of a
crime or of any underhand activity other than undermining the status
of women in science with sexist jokes said in public.
"A lifetime of distinguished creative work has ended in ruin." is a wild exaggeration; the chap resigned at the tender age of 72, he may well work again and few history books will record anything but his contribution to science. We're still talking about it now because it happened this year and stirred up a lot of existing frustration about the treatment of women in science. To my knowledge, Hunt was not harassed or threatened, but merely laughed at. A lot. He had claimed female colleagues kept falling in love with him. It's no hanging offence, but no-one can say that and not look like a prong.
It's
funny Scruton's piece should be published in a week that a very
different heretic (and one who has done far more to earn that title)
Germaine Greer made a stand for the voiceless by appearing on fringe
news outlet, BBC Newsnight, complaining about a petition to stop her
talking at Cardiff University, because of her widely published
transphobic views. This was a petition – people exercising their own freedom of speech - asking that she should be no-platformed. Student Unions are not obliged to provide platforms and audiences for anyone who feels they have something to say.
Cardiff University said they did not endorsed Greer's views but would not stop her speaking.Greer decided not to go. She would have been met by a far smaller audience than
that of Newsnight or the many other news outlets who have published
both her complaints about Free Speech, as well as her hateful remarks about
transgender women in the last few days (including the front page of
the BBC News website, up and left a bit from Scruton).
Greer has the right to say what she likes, but not wherever she likes. Nobody has, but Greer has far more opportunities to air her views to huge numbers of people than I ever will. What Greer has experienced is, ironically, exactly the same minimal harm she claims to be committing against transgender people when she denies their very existence; hurt feelings.
The
fact that people with as diverse views as Greer and Scruton could be
making these complaints and so loudly, when nobody who objects to
their views is being heard (Show me a prominent article about the
ills of homophobia this weekend. Where is the interview with Rachel Melhuish who set up the petition against Greer's talk?),
suggests something about the way freedom of speech currently works in
our culture.
So let's talk about actual
silencing. I write quite a lot about discriminatory language and the
media and much of this comes down to people shouldn't say that.
Language is tremendously important. The way women, men and minorities are
spoken about and represented is tremendously important.
When I say, “People shouldn't say that.”
I absolutely mean it. This isn't the same as saying "People shouldn't be allowed to say that." let alone "People should be arrested for saying that."
However, people
should be criticised for saying foolish things - this is part of freedom of speech. Sometimes, public
figures should lose their jobs over the things they say – the rest
of us run exactly the same risk and are likely to meet with far less
tolerance. However, fundamentally, I want to win these arguments. I
want to help persuade folk to treat others as they would like to be
treated.
This has limits and those limits should be obvious. I
didn't think very hard when I became the Goldfish with my painting of
a goldfish as an avatar, but over the years I've become acutely aware
of the way that I escape the abuse that other women with feminine
handles and photos of themselves routinely experience when they talk
about any political issue. Young women, women of colour, women
pictured wearing headscarves and trans women are targeted with
particular bile and there's reason to believe they have less recourse to justice.
Harassment
and abuse are always unacceptable and should be far more vigorously
prosecuted. These things force victims to change their behaviour and
create a genuine obstacle to speaking out. For some minorities –
particularly trans people and Muslim women – the high probability
of receiving abuse any time they draw attention to themselves may be
enough to keep them quiet.
Criticism - even unreasonable, lazy or incoherent criticism - doesn't have this effect. Nobody wants to be called a bigot, and Scruton has personally demonstrated that not everyone uses words like homophobia (or racism, sexism etc.) in a consistent and coherent way, but being told one's speech is prejudiced cannot be compared to threats
of violence, personal and sexualised insults and so on.
Meanwhile, this last week, while Scruton and Greer were speaking without opposition in the national press, it was announced that there will be a new register, like the Sex Offenders Register, which would prevent anyone with a conviction or civil order for "extremism" from working with children or young people. Nobody is clear quite what "extremism" is. We already have disasters like the Prevent Strategy which basically monitors young Muslims for signs of alienation or radicalisation, including what they say in public. And earlier this month, not at all famous Bahar Mustafa was charged for offenses apparently relating to her use of the hashtag #killallwhitemen on Twitter*, while the very famous Katie Hopkins, who wrote of refugees as "cockroaches" who should be gunned down or drowned before they reached Europe, faces no criminal action.
Obviously, I don't mean to suggest that we should only care about certain kinds of silencing, or extreme cases where people are menaced into silence. Nor do I believe that one has no right to complain of ill treatment if someone else is experiencing worse (someone always is). However, I do think it is worth observing that there are patterns in the people and opinions which do get sidelined, shouted down or even draw the attention of the criminal justice system.
Freedom of speech is a vital aspect of a free society and something we may always have to fight for. To reduce it to the freedom for powerful people to express their prejudices without meeting the disapproval and criticism of others only distracts from and undermines the real battle taking place.
* The nature of this kind of case is that the press cannot report exactly what Bahar Mustafa said that was so offensive, given that it is being described as "grossly offensive" in the charges. It may be that she did say something absolutely outrageous (#killallwhitemen is very difficult to take seriously).
This conversational game, common among young teenagers, had two separate sets of rules for me. At school, the game was an exercise in vanity and flattery; which actor was basically the older, more gorgeous version of you? If you struggled to name one, friends would make flattering suggestions; being a tall, brown-haired white girl, I should naturally have been played by Julia Roberts. Among my youth theatre friends, the game was about identifying which actor (if any) had the colossal talent required to depict the full melodrama of your life. Few have such a range, darling! A young Diana Rigg might have pulled it off, but barely!
I still think about this game occasionally, when I reflect on the fact that people in movies never look anything like me. Foz Meadows recently described this as The Perfect Hair Problem; women on screen vary so little in their appearance that they usually have the very same hairstyle, and that hairstyle remains perfect, come rain, shine or zombie apocalypse. Women on screen are overwhelmingly white, thin and without visible impairments, even more so than men. There are more transgender women than trans men on screen, but these numbers are minute and of course, they're often not played by actual trans women.
Women on screen are also overwhelmingly young. Even female characters who you'd expect to be middle-aged in real life - experts, senior managers and politicians, high-ranking police officers, the mothers of adult characters and the partners of middle-aged men - are played by inexplicably young women. Angelina Jolie is just a year older than Colin Farrell but was cast as his mother in Alexander. However, often middle aged women characters who might exist (especially mothers), have conveniently died before the start of the film. Occasionally - although the practice is far more common in the theatre – a middle aged or older woman might even be played by a man (the St Trinians movies, Hairspray, Orlando etc.).
A big part of the problem is about story-telling. You notice things like perfect hair far more when a character is actually written like a real person who would not have perfect hair. In the movie of my life, there's only one woman who has perfect, long, shiny and mechanically-straightened hair and even then only some of the time. Often, however, I find myself watching a movie, understanding that the (only significant) female character is not a character at all, but an object, a sexy lamp, the girl. It's not that she must be beautiful in a very particular way because she is eye-candy so much as the fact she needs to look like that so we recognise what she is. She can't be black or a wheelchair-user, not because audiences won't find such a woman as attractive but because the girl is never black, let alone a wheelchair-user. If this woman just wore glasses and kept them on her face throughout a movie (as opposed to taking them off as she comes out of her shell), it might start a revolution.
When we talk about the visual representation of minorities and women, the issues of story-telling, casting and the cultural baggage that goes with it are intermingled. One of the reasons folk were so upset about Eddie Redmayne’s casting as Stephen Hawking in Theory of Everything was that, even before the film was made, it was obvious both what kind of movie it would be and how it would be received. Redmayne was destined for critical acclaim, not for his courageous attempt to portray extraordinary genius, but for putting his able-bodied self into the position of a wheelchair-user. It didn’t really matter how well he imitated Hawking’s physical mannerisms because nobody really cares – he just had to look uncomfortable enough, disabled enough, and he was bound to be lauded. In Redmayne’s next biopic, he’s playing transgender pioneer Lili Elbe. Rinse and repeat.
Although there’s no serious argument for casting actors with the same sexual orientation as their characters, the pattern is the same with gay male characters, as with transgender women and disabled men: Non-disabled, cisgender, straight white men routinely play gay men, disabled men and transgender women in epic, often tragic movies which invite massive critical acclaim. The Fast Show’s parody of Forest Gump is almost twenty years old but the same movie is still being made right now:
Meanwhile, the most common objection to casting an actor with visible impairments to play a disabled role is that the character has to be non-disabled for some scenes, as was the case with Theory of Everything. This is only because almost every damn story with a disabled protagonist features the acquisition of impairment as a central dramatic narrative. Disability remains a metaphor for film-makers, rather than an incidental aspect of a character's life. I hope that, come an occasion for my biopic to be made, my getting sick will be the least interesting event of my life. It's already fairly low on the list.
Casting can't be about perfect authenticity. In the film of my life, someone with my particular condition would struggle to act in a film - I certainly couldn't play myself and my impersonation is seamless. However, this is about the representation of disabled people as a social group. We're all invisible for the same reason and the visibility of one of us benefits us all. As well as everyone else, who gets to see us as people rather than symbols.
Rigorous realism only matters when realism means representation. When they cast 5’7” Tom Cruise as Jack Reacher, a character who is 6’5” in the books, movie-makers weren’t contributing to an ongoing under-representation of tall men (in fact, very tall men are over-represented, while very-almost-average height Cruise is widely mocked for being a short-arse). Fans of the books may have a complaint but tall men do not. However, when the movie Stonewall, supposed to be depicting the Stonewall Riots, invents a macho young white cisgender male hero and sidelines the real-life trans women, lesbians and femme gay men of colour, well that's a scandalous erasure. See also from this year, Aloha, a film set on Hawaii with only white protagonists, including a white woman who, conveniently, is not supposed to look like she possesses the Chinese and Pacific Islander heritage of her character.
One of the problems we have is that campaigns around representation fail to take an intersectional approach. I often see articles about the casting of non-disabled actors in disabled roles which insist that nobody would stand for this being done to people of colour - "blacking up" is a thing of the past. And yet, routinely, characters of colour are either erased in novel adaptations or historic dramas or played by actors with much paler skins. Ridley Scott defended his Exodus: Gods and Kings (a film where Ancient Egypt is run by white people);
"I
can’t mount a film of this budget, where I have to rely on tax
rebates in Spain, and say that my lead actor is Mohammad so-and-so
from such-and-such, I’m just not going to get it financed."
In
other words, it’s a racist world, so even massively powerful, rich
and influential film-makers are compelled to be racist. We hear the same arguments made about the casting of all marginalised people. These actors are not well-known because they're not often cast so we can't cast them now because they're not well-known.
Frankly, any deviation from the perfect-haired women and more various but still rather samey men would be of benefit to the majority of us who don't see ourselves on screen. Whenever I see prominent women of colour, short, fat, trans or older women in movies, I feel better - any kind of diversity suggests there might be room in this visual universe for me. When I see prominent visibly disabled women on screen (once every five years or so), I feel more like a real person.
In this post I've concentrated on film because television does much better. Television increasingly features transgender people in trans roles, far more incidental disabled characters and greater ethnic diversity than you'll see at the cinema. British television especially features a far more diverse variety of women fulfilling a variety of roles. It's not a perfect medium, but it demonstrates time and again that audiences don't switch off when a drama doesn't look like every other drama before it.
Thanks very much to everyone who helped to spread the word and to those who have already taken part.
If you have a post for Blogging Against Disablism, please leave a comment including the URL (web address) of your post and the catergory your post fits best. Please also link back here, wherever possible (we're at http://tinyurl.com/BADday2015).
We'll carry on updating this post as any late-comers arrive. We've also been posting links to every blog using the Twitter stream @BADDtweets and these will automatically be posted onto our Facebook Page.
Education (Attitudes and practical issues effecting disabled people and the discussion of disability in education, from preschool to university and workplace training.)
Other Access Issues (Posts about any kind of access issue in the built environment, shops, services and various organisations. By "access issues" I mean anything which enables or disenables a person from doing what everyone else is able to do.)
Disablism Interacting with Other 'Isms' (Posts about the way in which various discriminations interact; the way that the prejudice experienced as a disabled person may be compounded by race, gender, age, sexuality etc..)
Personal Journeys Posts about learning experiences and realisations authors have had about the nature of disability discrimination and the impact on their lives.
The tenth annual Blogging Against Disablism day will be on Friday, 1st May 2015. This is the day where all around the world, disabled and non-disabled people blog about their experiences, observations and thoughts about disability discrimination (known as disablism or ableism). In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.
How to take part.
1. Post a comment below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog. Everyone is welcome.
2. Spread the word by linking to this site (http://tinyurl.com/BADD2015), displaying our banner and/ or telling everyone about it on blogs, newsgroups, Facebook, Twitter, Pinterest and so on (we are using the hashtag #badd2015). The entire success of Blogging Against Disablism Day depends entirely on bloggers and readers telling other bloggers and readers in advance.
3. Write a post on the subject of disability discrimination, disablism or ableism and publish it on May 1st - or as close as you are able. Podcasts, videos and on-line art are also welcome. You can cover any subject, specific or general, personal, social or political. In the previous nine BADD, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism, sexism and other forms of discrimination. Every year I have been asked, so it's worth saying; the discrimination experienced by people with mental ill health is disablism, so naturally posts about that are welcome.
Blogging Against Disablism Day is not a carnival of previously published material. The point about doing this around one day (or there abouts) is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you've written in the past as you wish.
4. Come back here to Diary of a Goldfish on the day to let everyone know that you've posted and to check out what other people have written. I shall post links to everyone's posts (slowly) throughout the day, creating an archive. However, I do need you to comment and leave the URL of your post or else I shan't find your post and won't be able to link to it.
We have both a Twitter account @BADDtweets and a Facebook Page where there will be notifications of new posts and updates to the archive during the day.
Accessibility
Naturally, Blogging Against Disablism Day invites contributions from people with all variety of impairments and none at all. You are welcome to contribute with podcasts, video-blogging or anything else that allows you to take part. And whilst May 1st is when this all takes place, nobody who happens to have a bad day that Friday is going to be left out of the archive.
If anyone has any questions about web accessibility, I recommend the Accessify Forum. I am not an expert on web accessibility myself, so if there are any suggestions about how I can make this day more accessible, please e-mail me at diaryofagoldfish at googlemail.com
The Linguistic Amnesty
Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, please respect the language that people use, particularly to describe themselves in their own contributions. We all have personal preferences, there are cultural variations and different political positions which affect the language we use. Meanwhile, non-disabled contributors can become nervous about using the most appropriate language to use, so please cut everyone as much slack as possible on the day.
At the same time, do not feel you have to use the same language that I do, even to talk about "disablism". If you prefer to blog against disability discrimination, ableism or blog for disability equality, then feel free to do so.
I've written a basic guide to the Language of Disability which I hope might explain some of the thinking behind the different language disabled people prefer to use about themselves.
Links and Banners
To link back to this post, simply copy and paste the following code:
These banners have seemed popular over the last couple of years and I am yet to think of anything better. If anyone fancies editing these images or coming up with something new, then please do so. You are free to use and mess with these as you like, so long as you use them in support of Blogging Against Disablism Day. If you already have the banner, you just need to change the URL that it links to from last year's BADD. Otherwise, you simply need to copy the contents of one of these boxes and paste it on your blog, in a post or on the sidebar as you like. The banners come in two colour combinations and two sizes. The sizes are a 206 pixels square or 150 x 200 pixels.
This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:
And here's the code for the narrower one (which can be seen here):
This is the colourful banner which reads "Blogging Against Disablism". This is the code for the square one:
And here's the code for the narrower one (which can be seen here):
Please leave a comment (including the URL of your blog) to let everyone know you are joining in and I shall add a link to you on the sidebar. Also, if you have any questions, please ask.
Welcome to Blogging Against Disablism Day 2015!
This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:
