------------ ---------- Diary of a Goldfish

Diary of a Goldfish

Thursday, August 14, 2014

Accessing The Future and That Movie Where The White Straight Cis Non-disabled Guy Saves The Day Despite Everything.

I wanted to join in the blog hop to raise awareness (and hopefully money) for Future Fire's latest project Accessing The Future,which they describe as an "SF anthology exploring disability & the intersectionality of race, class, gender & sexuality."

If you enjoy science fiction or have any interest in promoting diversity in fiction, please support this project. Also check out (and join in) their blog hop - here are Jo's and David's intriguing contributions, as well as this post by A C Buchanan on disability in speculative fiction.

I have not managed to do anything new and am soon to be invaded by small children. However, I unearthed this monster from my Drafts folder as the subject matter is not irrelevant to diversity (or the lack thereof) throughout fiction:

That movie where the white straight cis non-disabled guy saves the day despite everything. 

This is jam-packed full of spoilers – can’t work round that.

Most of the greatest films ever made feature a hero from a very narrow demographic; straight cis non-disabled white men make up around a quarter of the British population and even less of the US (where most English language movies are made). And yet this minority are often treated as a massive majority in movies; these are the faces we see most often on screen and indeed, these are the faces of some fantastic characters: James Bond, Philip Marlowe, Indiana Jones, the Man with No Name and up to a point, John McClane. 

The fact that in 2014, film-makers treat a character's whiteness, masculinity, straightness etc. as necessary criteria for a protagonist, particularly in action, science-fiction and fantasy, is disappointing. But something worse is happening. In recent years, I've seen a whole raft of movies where heroes with these qualities have very little else. They don't save the day because they behave heroically; they save the day just because they are that guy. 

This hero is not heroic.

In many cases, he is outright incompetent.

In Non-Stop, Liam Neeson's character is an alcoholic who was thrown off the police force for his drinking and then, miraculously, employed as a Air Marshal.  White House Down begins with Channing Tatum's character being turned down for a job at the White House because he’s unqualified and has terrible references. In Star Trek, Into Darkness, Kirk is the least talented person on the Enterprise, an incorrigible lech with a reputation for getting into brawls, a man of thirty-something they talk of sending back to the academy.

These are not men who are underestimated and come to prove themselves; in Non-Stop, our hero fannies about, upsets everyone and eventually follows protocol after the bad guys have messed up their own plans. The most pivotal action Kirk takes in the entire movie is to fix a machine by repeatedly kicking it in frustration. The hero of White House Down is good at shooting people, but he isn't crafty or cunning. He's just sufficiently violent.

I assume there must be an idea, somewhere, that movie audiences want heroes they can relate to - ordinary people who aren't particular good at anything and don't make good choices. Only, most of us are good at stuff and we do make good choices. Flawed heroes are great - we want to consume fiction featuring human beings (even if they are pixies, rabbits, crockery or whatever). But where's the entertainment in watching someone just get lucky?

He was a far greater man in the original film or book. 

It's also remarkable how this treatment has been applied to established characters. William Shatner's Captain Kirk had tremendous charisma and often made smart choices, even though his wisdom was a little inconsistent. You understood why everyone wanted to follow him into battle and/ or eat his face. Chris Pine's Captain Kirk, on the other hand, has a surprising large forehead.

Given the immense amount of time and effort they put into making The Hobbit into three - three! - movies, you'd think they would have considered the character of the eponymous hobbit, Bilbo Baggins; a small man who uses wit, cunning and the help of his friends to overcome enormous foes. In the movies so far, Bilbo is a small man who happens to be aggressive and fast. 

In the book, when the dwarves have been captured by spiders, Bilbo makes himself invisible and sings to them, freaking them out before driving them off by throwing stones. In the film, he fights them, stabbing them and waking up the dwarves so they can pull the spider's legs off. In the book, they gradually win the trust of Beorn (apparently a recluse since leaving Abba) by introducing themselves and telling stories. In the movie, the gang run away from Beorn's bear self, occupy his house and wait for him to turn human. 

If you're determined to suck the dynamism out of your heroes, you need to bring in a lot of outside help to make sure they save the day. This is done in two ways:

It is his destiny.

There's an awful lot of destiny involved in these movies; these are legends, not fairytales. The idea of an ordinary boy or man who discovers he is something significant doesn't make for a bad story - that's Harry Potter, among others. However, Harry Potter found out he was a wizard and then worked hard at being the best wizard he could be, overcoming obstacles, forming alliances, facing down his enemies.

In these movies, destiny is pretty much enough, although unlike Harry Potter, these are privileged boys and men, living very comfortable lives. In Ender's Game, Ender apparently has some skills but he is repeatedly tricked and manipulated by the people who believe it is his destiny. The same people manipulate his colleagues to like or dislike him and to follow him as a leader. He is then finally tricked into saving the world. 

Comic book superhero movies are not generally That Movie; superheroes belong to the metatext and are thus pretty reasonably-constructed characters. But the sheer number of these films and the fact that these heroes triumph because they are heroes (or in the case of Thor, because he is a god) are part of this general pattern.

In Kick Ass, good prevailed because of considerably cunning, courage and acquired skill. In Kick Ass 2, good prevails against far greater odds because... well, it just does somehow.

The other way you overcome the great gap where the hero's heroism should be is to make him adored by everyone around him.

Everybody loves this guy. Nobody knows why. 

Oz, The Great and Powerful came out of the questionable idea that there are no fairytales with strong male protagonists. So what kind of hero did they go for? Well, the first, second and third thing we learn about Oz is that he exploits women for both money and sex, he also exploits his male colleague, he continues to behave with abject cynicism even after he finds himself in a mysterious magical land. Yet everyone he meets adores him and thus he is reformed through the entirely irrational love and faith of others.  

In Non-Stop, two smart women - played by the excellent Michelle Dockery and Julianne Moore - never waver in their faith in our unreformed alcoholic Air Marshal, despite their short acquaintance, knowledge of his drunkenness and the fact he manhandles and accuses them.

In Oblivion, the Scavs risk life and limb to communicate with Jack Harper, a man who has been killing them all, just because he's started to frown and gaze into the middle distance. They already have a perfectly good plan for defeating their enemy without him - a plan that would have worked out if they hadn't brought Harper there to tell him about it. For no good reason.

The hero always gets the girl.

We've apparently moved on from having a final scene where the leading man takes the leading (often only) woman into his arms for a snog, even if they've only exchanged a few lines about nuclear fusion early in the second act. Getting the girl is now more often implied; the final scene features a moment of flirtation or a mutual look of longing. But that guy still gets the girl. Beautiful women are no longer prizes for heroic acts, they are the prize for being the protagonist in the movie, even an incompetent protagonist whose path was largely dictated by fate.

Bilbo Baggins is the one exception - he does not get the girl (although I've only slept through seen the first two movies so far), although the film-makers have invented a love story which begins when the dwarves are captured by the elves. Addressing a lady-elf, the best-looking dwarf says, "Aren't you going to search me? I could have anything down my trousers!" 

At this point, Tolkein's ghost entered the room and smashed in our telly with a copy of The Anglo Saxon Chronicle

There are action, adventure and science fiction movies with black protagonists and women protagonists and those aren't all great movies. They do, however, make their heroes and heroines demonstrate some reason for us to root for them and some means by which they might have a chance at fulfilling their quests or defeating their enemies. In fact, action movies with women protagonists work hard to establish, within the first scenes, this is not just any woman; this is a special woman, with special skills. Or occasionally, this is a very ordinary woman who is about to befall a terrible fate which will force her to learn to be special.

In fact, an irony about these movies is that they are not short of competent women and people of colour. The women on the Starship Enterprise are massively qualified and brave and Sulu takes the helm with great success (let's skip past the casting of Khan). White House Down staffs the Secret Service with smart women and has Jamie Foxx as president (as he deserves to be). Most of the women in Oz, The Great and Powerful are tremendously strong and powerful, despite Oz's baffling sexual allure being enough to turn a good witch bad.

So, as well as these character's failure to engage the viewer, there's a dreadful message of entitlement here. It used to be that a white straight cis non-disabled guy could go to the movies and come away with the message that people like himself were capable of great things. Now he can come away with the message that someone like him will achieve greatness however little he actually does.

Meanwhile, the rest of us? We've got to knuckle down and rally around our hero; the whole world is at stake and he doesn't look like he can save it without us. 

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Thursday, July 17, 2014

Who is manipulating us on social media?

It is Apple or Lenovo? A gorgeous white man with dark
hair and glasses clutches his mysterious laptop.
When Google’s search results became personalised, anxious voices were raised about the danger of keeping individuals within their own happy filter bubble, where they only saw things in which they had an established interest, only heard opinions of which they already approved, only came into the presence of people like themselves.

Similarly, when last month it was revealed that Facebook had been conducting unethical psychological research on its users, people were outraged that they could be so manipulated. Laurie Penny said
“Nobody has ever had this sort of power before. No dictator in their wildest dreams has been able to subtly manipulate the daily emotions of more than a billion humans so effectively." 
And I’m thinking, what about us?

Now, I can’t tell you how big a fan I am of social media – without it, my universe would often shrink to the size of a bed. However, the biggest danger of social media is how, quite unconsciously, we influence and are influenced by one another. None of it is terrifying but - just like bearing in mind that all our free tools belong to commercial interests with American cultural values - this is stuff we need to think about.

On-line and off-line social behaviour differs in three main respects. The first is by far the most explored; with fewer clues to social status and identity, people talk to others with an ease that doesn’t occur in the same way off-line. This is mostly a good thing. Disadvantages are obvious.

The second is that on-line, a person may socialise with a wide group of people at any time of the day or night, in almost any physical location. Things can get intense, which isn't always a problem - a lot of information can be exchanged and friendships can fuse fast. Yet equally, this social world can become psychologically inescapable. It can be hard to leave alone, whether you’re in the middle of a great conversation or a raging argument. It's in your pocket. It sleeps beside you at night.

The third is this world’s typical reliance on one central and cohesive identity for each person. Some people have a few different on-line handles, each used for a different purpose. But most people have just one. Off-line, a person may be one version of themselves with work colleagues, perhaps another with the boss, another on the train, at home, with the in-laws, at choir practice, in the football team and so forth.

In the olden days, the internet was yet another place to be where you could be another, often freer or more authentic version of yourself. It was a place marginalised people flocked to, in order to be around other people like them and to find acceptance of the versions of themselves (as members of sexual minorities, disabled people, crumhorn obsessives etc.) that wouldn't be made so welcome elsewhere. Facebook, in particular, encourages us to consolidate all our identities into one definitive self. 

We need to be aware of this and how it affects us and I don’t think we generally are.

Almost the first people I found on-line as a teenager were other young people with my chronic illness. This was a wonderful thing but after a while, I came to terms with my condition and grew disillusioned with the culture of these groups. I don’t want to tar all illness-related support groups with the same brush or slander my friends who are still part of these groups - most of my experience is with particularly vulnerable young adults. But there are groups, or cliques within these groups, which work like this:

Everything people talk about is placed in the context of illness. Every positive experience must be qualified with the cost in symptoms (probably spoons these days) – this turns a lot of positive experiences either neutral or negative; I had a lovely day today but I will now have three weeks of raging agony. Other people’s positive experiences can be celebrated but not without regret; So glad you had a lovely day; if I did half as much, I would probably collapse and die. Everything that goes wrong in life is put down to or made very much worse by illness. Outsiders can’t possibly understand.

This is a caricature, of course, and it’s very important to recognise that people who edge in this direction are not especially morbid and self-obsessed. It’s all about isolation and belonging. Folk are isolated and vulnerable to varying degrees but have found a group to which they can belong. So they cling onto that, imitating one another’s behaviour and constantly reasserting their qualifications for belonging: I am one of you, I am one of you. Did I mention I am one of you?

It’s a strong example because the common ground is very specific. However, I've seen something like this in pretty much every on-line community I've wandered into since, whether creative communities, sceptic or geek communities, political or egalitarian groups. 

Political campaign groups are particularly at risk because of the combination of passion, urgency (things must change – lives are at stake) plus the issue of public opposition. Any social media campaign will meet with dissent – Blogging Against Disablism Day has a very broad remit, more a carnival than a campaign, but still meets a few voices of derision every year. 

Campaign for something specific, something counter to the status quo or government policy and there are going to be objectors. It may even be that most people in the world basically agree with you but don't care enough to be involved - objectors care enough to let you know about it and often in abusive terms (even if it's about the faces on our banknotes). It can very quickly feel like the enemy is everywhere. This adds to a sense of isolation and increases the need to feel safe and secure within the group. 

And again, the three big difference between on-line and off-line worlds come into play:

My fingers on a keyboard. Photograph by Stephen.
Relative anonymity as well as - I think, more importantly - geographical and psychological distance allow arguments to rage. I've seen trolls, but far more often I see two people who have the same objective abandon basic civility over one small contested matter. I'm guilty of this myself. 

Someone can campaign from the moment they wake up in the morning until they go to bed at night. They might be doing many other things as well, but there’s less likely to be a set time for this activity, after which they leave it alone. Without carefully managed separate accounts and a will of steel, it is difficult to socialise while staying clear of politics. There are rows in grass roots meetings in the village hall, but everyone goes home after an hour or so. 

Having a single on-line identity means that everything feels personal. It’s more difficult to differentiate between an attack on your views and an attack on your person. And then there’s personal branding.

When I first started blogging, I quickly saw that the way to get the most hits, comments and links was to be as consistent as possible; blog about the same kind of thing, or different things but from the same angle. I resisted this, not for any noble reason around authenticity or being true to myself. It’s just that this blog very quickly became a tremendously useful vent and I wanted to  use it however I fancied.

However, there was and is - now more than ever - validation to be had in consistency. There are times when I've had a spell of writing about the same kind of thing (usually gender, sexuality or disability) and it is during these times that I get the most hits, the most links and the most retweets. This naturally drives me to do more of the same. These are also times I have felt quite lonely. After all, I am not all about disability, or gender, or sexuality. Meanwhile, people agreeing with you - worse, simply retweeting or showering you with "likes" isn't engagement. It's tremendously gratifying, it's very nice. It is, in fact, successful branding. If you're a business or someone who needs to sell themselves professionally, this is exactly what you need to aspire to in your professional life. But it's applause, not social interaction. You win fans, not friends. 

Folk always got hooked on applause and I see a lot of that. Not just blogging about the same thing, but tweeting on the same subject, backing that up with Tumblr, doing the same on Facebook. I see a lot of it in political movements, but I also see it in the way someone might tell the same joke over and over, the way some parents now keep a cameraphone between themselves and their kid, the way some people apply cynicism to everything other people care about and then feel compelled to apologise for any glimmer of enthusiasm. It's so tempting, to keep coming back to what works, but when we do that, we risk denying ourselves the opportunity to do something different; it's not who we are, it's not what others expect, we're going to confuse and disappoint them.

I strongly feel we need to avoid being one brand of person - partly for our own health and happiness, but also for the health and happiness of others. We're no longer in high school; we don't have to identify ourselves as the sporty one, the diva or the nerd. We don't need to identify our tribe, fall into line and hold on tight, forsaking all the other interesting people around. 

Believing we have the strengths that others attribute to us can be a confidence boost or it can set us up for a fall. Believing we have the limitations that others attribute to us can be a killer.

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Monday, June 30, 2014

Contains Strong Language

Years ago, I was in a cafe listening to a conversation between a group of builders on their break. One man was telling a story about how his family had travelled to Greece to see his cousin ordained within the Greek Orthodox Church.

“My fucking cousin,” the man declared, “a fucking priest!”

As I learnt from my eaves-dropping, being ordained is a “big fucking deal” in Greece or at least it was in this particular family, who treated the occasion much like a wedding, with “a fucking banquet” and “fucking speeches”.  But towards the end of festivities, a crisis struck:

“We couldn't find my fucking cousin – the fucking priest! We look everywhere but he’s gone fucking missing in the middle of all this. And at the same time, we realise my fucking sister’s nowhere to be seen either. We look all over this fucking hotel we’re staying at. Then finally, in this big fucking dining room where the whole family is, someone thinks to pull back the curtain. And there, behind the fucking curtain is my fucking cousin – the fucking priest – and my fucking sister, and they’re, you know, doing it.”

One of the oddities of living in two households is the effect it has on my language. My in-laws don’t swear, ever. They don’t blaspheme. They don’t make rude jokes. I’m making them sound square, but there’s a lot of laughter in the house, and very little of it is ever at the expense of other people. I don't swear around them. In fact, I barely swear in their house out of earshot. Worse, I struggle to swear in writing when I'm there. 

My parents do swear, though not very strongly - mostly the B words; bloody, bollocks, bugger, bullshit. They were more careful when we were children and even these days, Mum often tries to stop herself – she reaches for Fiddlesticks! or Gordon Bennett!, but it comes out “Fiddlebugger!” and “Gordon Bollocks!”

I swear at my parents' house. I tell rude jokes. But I can't say I feel a lot more at home or more myself. I think I tell better jokes at my in-laws' where I can't always reach for the obvious. 

I once told the story of the builder, his sister and his cousin the Greek Orthodox priest in the pub. A friend then told of a man whose car broke down outside her flat. She knew cars, so she came outside to ask if there was anything she could do. Exasperated, the man pointed in the approximate direction of the engine and exclaimed, "The fucking fucker's fucked!"

Common problem with cars that age.

One day, I was in the kitchen at my in-laws' house when a bird flew in through the window at great speed. It bounces off my head, flew in a circle than crashed against the glass of the patio door as it attempted to leave. This all happened in a few seconds and it was a shock. I spoke. I said, “Goodness!”  Not even a “Damn!” or “Crap!”

(The bird was probably okay. It was alive, though stunned and it hadn't broken its neck. We put it under a bush and it did disappear - we hope it flew away.)

The other night, here at my parents’ house, a box of chisels fell on my toe – not just any toe, but the big toe whose nail has only just recovered after an eighteen month saga of infection, threatened removal, an in-growing crisis and and recovery. I said, “Fuck.” I said it a few times. But I know, had the same thing had happened at my in-laws, I still wouldn’t have sworn.

(My toe is probably okay. The next day, it was the next toe along which was bruised.)

I almost feel like it shouldn't be possible for spontaneous reactions, exclamations of shock or pain, to vary according to social context. When people live somewhere where they must speak a second language, I wonder how often they swear or curse in their mother tongue?  What does the context have to be?

When I had post traumatic stress disorder, swearing was a major trigger. My first husband used to call me shithead, shit for brains, I talked shit, my stuff was shit, I was a bitch, sometimes a cunt, I needed to fuck off, shut the fuck up or go fuck myself, and so on and so forth. If I complained about the swearing, I was being pathetic; it was just the way he spoke. He would have never used the phrase tone argument but that was the gist. But of course, tone matters. Tone is context.

“How are you doing, shithead?” said with a smile and in a friendly tone, preferably to someone who likes to be called that and is permitted to call the speaker something equally ridiculous is quite different from, “Shut up, shithead!” said in anger, even if it happens every day. And the shit is emphatic – it’s there for a reason, shithead is not the same as airhead, let along sleepyhead. It's no coincidence that someone who used this language was physically violent. 

Even my PTSD symptoms differentiated between different types of swearing. I had to adjust my reading and cull my Twitter feed of very sweary people, even people I liked and respected in other ways. But it wasn't just about the words, but the way they were used.

If I read “Bloody hell, why doesn’t [Named Politician] go fuck himself?”  

I might think it unnecessary and maybe irritating, but it wouldn't upset me. Big difference if I read

“Bloody hell, [Named Politician], why don’t you go fuck yourself?” 

This isn't just about trauma. I've been around the usage of "Fuck off!" as a warm, friendly "Give over!" almost like "Stop tickling me!" or the wide-eyed "Shut. Up." of adolescent disbelief. But unless you grew up with that, swearing in the second person can still feel like an attack. Especially in writing where there's no voice to reassure us.

Stephen was one of these poor kids who suffered that great indulgence-neglect of a TV in his room from an early age. He's also a massive film buff and you can’t really be that if you can’t tolerate the full range of the spoken word in English. He spent his teenage years travelling by taxi to hospital school, exposing him to both typical South East taxi-driver parlance, as well as the language of those classmates who were there for behavioural reasons or in one case, because they had impaled themselves while evading the fuzz. Thus, while his parents never swear, Stephen was in no way sheltered from foul language as a child. 

Yet Stephen almost never swears. He swears perhaps once a year. And when it happens, it's an earth-shaking swear.

I have pointed out that as a non-swearer, swearing would offer a little pain relief, at least in the immediate aftermath of injury. But it’s not in him. I have suggested he invents words that sound like curses for this purpose, but he is against it in principle. He doesn't even use the substitute swearwords available to him; no sugar, darnblast or curses.

I'm not convinced this is entirely healthy. Not the not swearing, but the not even cursing, even mildly, when things hurt or go wrong. 

My swearing varies massively according to pain and stress. On a bad pain day, I can be oblivious to the amount I’m swearing, so much so that it’s disturbing to have it pointed out to me. Yet, although I'm less likely to spend time with other people on such a day, I know I still won't swear in front of anyone who might be offended. 

When I am stressed out, I become painfully aware of how much I swear. In recent weeks, our housing situation is looking to get sorted, but with no certainties and many causes of minor panic along the way. Plus there's been - there is - a family crisis afoot. I've been swearing like a trooper, I've been swearing in unhelpful ways about other people, I've been swearing in ways that would make me cringe to repeat.

And clearly, I should have a handle on this. My Granny may visit at the weekend and I won't swear in front of her, whatever happens. Burning rocks can fall from the skill and all I'll say is "Blimey!"

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Tuesday, May 20, 2014

This is what the Devil looks like.

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

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

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

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

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

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

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

A lot of people can smell the sulphur just now.

There’s a now much-quoted blog post by poet Michael Rosen which includes the passage:
"Fascism arrives as your friend.
It will restore your honour,
make you feel proud,
protect your house,
give you a job,
clean up the neighbourhood,
remind you of how great you once were,
clear out the venal and the corrupt,
remove anything you feel is unlike you..."
On Twitter, Steve Graby objected: “Worth remembering fascism comes as your friend IF you are white, straight/cis and non-disabled. Otherwise it's pretty blatantly your enemy from the start.”

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

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

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

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

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

Last week, I was rolling round my village, looking at potential places to live. And the thought crossed my mind,
"What if people put party political posters in their front windows? What if we find somewhere perfect but we know, without meeting them, that the neighbours are a bunch of bastards who hate people like us, our friends and families?"
And I knew I was wrong at the time (and I saw just one poster, in the house of someone who always parks their sports car on the pavement so that my wheelchair is in danger of scraping the paintwork as I pass). Then this weekend, I hear that I should prefer not to live next door to Romanians and I felt even more guilty. It would be reasonable to assume that people with those posters in their windows are ordinary, fallible, just not paying so much attention, maybe with a little less to lose.

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

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Thursday, May 15, 2014

Peak Beard & The Universal Principles of Body-Shaming.

I began to write this post some weeks ago, when the world was shaken by the news that we (or at least white Westerners) had reached Peak Beard. I was busy and it got abandoned. Then this weekend was Eurovision and I decided to return to the subject.

We watched Eurovision with my folks this year, and thus were subject to my mother's beard commentary. My mother doesn't like facial hair. She seems particularly offended by a beard on a good-looking young man because it's such a waste. Eurovision featured lots of good-looking young people with beards; beards remain very fashionable. And thus we sat through two hours of

"I like this song but not the beard!"
"I'd vote for him if he'd only shave!"

and inevitably,

"But she'd be so beautiful if she didn't have that beard!"

Then yesterday, I heard of Russian male homophobes shaving their beards off in order to defend their fragile masculinity against the full-bearded influence of Eurovision victor Conchita Wurst.

One of several fascinating facts about men's facial hair (or lack thereof) is that the subject, when raised, provokes just as much alarm and disdain as discussion of women's grooming and appearance.

Every week, newspapers and magazines will have a news story or opinion piece about women's pubic, underarm or leg hair, women's body-shape, fitness or fatness, make-up, cosmetic surgery, bras, high-heels, corsetry and so forth. Every week, newspapers and magazines can guarantee a hoard of men and women clicking through to confirm and often share their opinions about the disgusting, unfeminine, unfeminist, shallow and lazy choices that women make about their appearance.

We've talked about this a lot - many of those articles talk about this, despite the fact that they often repeat the same messages (don't judge me for behaving as everyone should!) and play host to the same vitriol below the line. However, while there's no doubt that there's a massive gender imbalance in whose bodies and choices are being scrutinised, men's facial hair shows us that there's also something universal and ungendered going on.

Looking through the articles, comments and Twitter chat about Peak Beard (the idea that beardless men appear more attractive in a world of beard ubiquity and vice versa) we see that

1. Exactly the same arguments are used for and against facial hair as are used for and against any choice a woman might make about her own appearance. You'd think that that an argument about beards would be dynamically different from, for example, an argument about high heeled shoes. But they're not. The only difference is that there's no unfeminist choice to be made about beards, although feminism is blamed for men shaving - apparently, men who shave have been rendered fearful of their own masculinity (apart from Russian homophobes). Men who don't shave have the more rational fear of sharp objects.

2. The same arguments are made both for and against any given behaviour. Shaving isn't healthy; it causes rashes, nicks and dryness, whereas beards are breeding ground for deadly bacteria. Shaving is part of being a real man, a rite of passage to young men, the minimal requirement for smartness, whereas beards are a sign of masculinity; a real man is a bearded man and men who shave are afraid of growing up. See also women's pubic hair, dieting, bras etc..

3. Almost all arguments originate from a personal preference; I like my beard, I like my smooth face, I prefer a bearded man, I prefer a smooth face. But it has to be extrapolated to some universal truth; "Sorry guys, but women just don't fancy men with beards. None of the men I've dated in the past yea had beards. So if you ever want to get laid again, have a shave!"

And here, we begin to see what's going on. Folks are anxious. Folks are defensive about their own behaviour or preferences. There must be a right way. Newspaper columns, magazines and advertisers of all variety certainly suggest this: Do things the right way. Buy our products to avoid humiliationThe recent Veet advert suggested that if a thin female model has 24 hour's hair growth on her legs, she might as well be an overweight, hirsute bloke with a high-pitched feminine voice. Which brings me to

4. Cultural tropes around nature, gender and sexuality are then wheeled in as if they were facts. There are real men, and real women - all straight and cis gender. Real men and real women behave in a certain way and desire certain things in their partners. People who deviate are not real; women who don't fancy bearded men are lesbians, are afraid of real men and will die alone. Some men (with or without beards) talk with utter disdain about women who might not fancy them, as if any pognophobe is going to think, "Brian from Skegness thinks I'm a silly bitch for not fancying men like him. How could I have been so wrong?!"

Some straight women are compelled to share fairly graphic detail about how they like to tug on a beard during sex, or ask their boyfriends to shave mid-way because they can feel the hairs growing. Worse are the ones who are effectively negging; "Most women run screaming when they see a bearded man, but I'm able to see past that. What do looks matter? Leave all those scornful women who will laugh at you, humiliate you in front of your friends and be rude to your mother to those cleanly shaven men! Come here, beardy!"

Exactly the same thing happens with women's appearance. There's no shortage of straight men lining up for medals for their courageous tolerance of slight variations from our cultural model of conventional beauty (for a recent essay-length cringe-athon, see In Defence of Hairy Women).

It's quite easy for me to write about beards because (a) I cannot grow one, (b) nobody would expect me to and (c) I really have no particular opinion about them. Some beards look good, some not so much (a fashionable shape on an unfashionable face*) and some are quite funny (our Latin teacher, an eccentric and very skeletal-looking man had a long goatie beard that curved dramatically to one side, despite constant ponderous smoothing). People should do what they like - or what they can; some men cannot grow a beard, others struggle to shave.

It would be much harder for me to talk about female grooming. It shouldn't be too hard for me as a woman who, in being attracted to other women, knows that there are few universal turn-offs around these matters. It shouldn't be too hard for me as woman who, being a conscientious feminist hippie-type, has conducted long-term experiments in things like growing or removing leg, underarm and pubic hair. I have worn a lot of make-up and none at all for many years. I even stopped using any commercial products on my person (apart from soap for handwashing) for about eighteen months.

The only thing I've ever dismissed outright are those Spanx-type magic pants that squeeze everything together? I bought some, I put them on and then I cut them off. 

However, it is almost impossible to talk about these issues in complete neutrality. And in the absence of such neutrality, it seems that culture has primed us to get defensive (I wouldn't leave the house without my Spanx. But you can't expect miracles, you whale!). And I think the beard thing demonstrates that this is nothing inherent to women, or even women's conditioning. We all need to get over the fact that other people like, want and do different things to ourselves and it's all perfectly okay.

(yeah, but if I work harder on that last sentence, I'll never post this).

* By an unfashionable face, I don't mean an ugly face, just one that hasn't got this week's bone-structure and colouring. Vaguely related to this, here is a great piece about being a young brown guy whose now-fashionable beardedness has previously been a factor in his experience of racism.

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Thursday, May 01, 2014

Blogging Against Disablism Day 2014

Blogging Against Disablism Day, May 1st 2014Welcome to Blogging Against Disablism Day 2014!

Thanks very much to everyone who helped to spread the word and to everyone who has blogging against disablism, ableism and disability discrimination these last few days.

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/BADday2014).

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.

Blogging Against Disablism 2014

(Disability discrimination in the workplace, recruitment issues and unemployment). 

Benefit Scrounging Scum:  Hard Working Species, The 'Striver Scrounger'
EmsyBlog:  Access To…oh forget it
Murder of Goths:  Employ me? Work and disability hurdles
Random Happenings and Observations:  Attitudes towards Disabled People
Scope:  ‘You’ve got so much stacked against you’
This ain't livin':  Sheltered Workshops

(Attitudes and practical issues effecting disabled people and the discussion of disability in education, from preschool to university and workplace training.)

Friendly crips and our friends:  How ablism stopped me learning how to teach against ablism
Queen Cakeface:  Academic Ableism - How Formal Education is Failing the Disabled and Chronically Ill
Rolling with the Punches:  Academic Battles
That Crazy Crippled Chick:  One Year Ago - What Ableism Didn't Do
Yes, That Too:  Not what I was planning on but it's ableism and I'm against it

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.)

Black Telephone:  The Prom Dress
A Blind Man's Journey:  Housing for All
Crippled, Queer, Anglo-European
Ranter: Product Packaging Problems & Solutions?)
Damn the Muse:  Service plans gone haywire
Planat Community Blog: Accessible travel - issues and solutions
World of Accessible Toilets:  Dignity Down the Pan

Definition and Analysis of Disablism/ Ableism

The Bardo Group:  Still Here
bottomfacedotcom:  Are you disablist/ableist? 
Low Visionary:  From disableism to human rights
Making rights make sense:  Blogging against ‘disablism’
pseudoliving:  Nothing About Us Without Us?

The Language of Disablism(Posts about the language which surrounds disability and the way that it may empower or disempower us.)

Murder of Goths:  Worst things you can say

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..)

Indigo Jo Blogs:  Dudes

Disablism in Literature, Culture and the Media

Bridgeanne art and writing:  Thoughts re writing ‘Girl with a White Dog’
Cracked Mirror in Shalott:  I'm Not a Side Story
Diary of a Goldfish:  Against "Awareness"
Funky Mango's Musings:  Writing semi-autobiographical fiction about disability
A Hot Bath Won't Cure It:  Invisible Disability – disablism from different perspectives
Kink Praxis:  Imagining Disabled Characters in Erotica
Maijan ilmestykset:  Nasevaa ableismia / Snappy ableism
Thoughts of a crinllys:  Rejection in a sci-fi world
Tsana's Reads and Reviews:  Blogging Against Disablism 
Visibility Fiction:  Getting it wrong – Writing disability in fiction
A Writer In A Wheelchair:  Not such an equal “ism”


Disability Studies, Temple U.:  Wikipedia Against Disablism

Relationships, Love and Sex

Journeymouse:  Teaching Someone Else to Live With An Invisible Disability
Living Disabled:  Peace, Anger, and Other (blasted) People


AthletesFirst:  A challenge to coaches
AthletesFirst:  Not quite visible


Feminist Sonar:  Valuing the Life Criptastic
I (heart symbol) the Phylum Chordata:  Repercussions
Philip Patston:  Blogging against blogging against disablism
Powerful Bitch:  The Big BADD Cripple
The Social Worker Who Became Disabled:  Are Social Workers Part of the Problem? 

Poetry and Fiction against Disablism

As Your World Changes:  Weary Words from a White Cane Warrior
Ballastexistenz:  When we died, we found each other
Diary of Mister Goldfish: Clippity Cloppity Goat and the Dragon
Here be Prose:  Someday
Same Difference:  Disablism is Everywhere
Untitled:  BADD14

General Thoughts on Disablism

Accessibility NZ:  Don’t use disability as the bogeyman
AZ is Amazing:  Don't put words in my mouth
Bigger on the Inside:  The fundamental interconnectedness of all things
The Chronic Chronicles:  Ignorance, Exclusion and Invisibility - the reality of being disabled in the UK
Dannilion.com:  Internalised Disablism
Diary of Mister Goldfish:  Need for Speed
The eGremlin:  Things are not always what they seem
The Haps:  The Question
Journeys:  Disability Stories - Resistance, Resilience, and Community
Meriannen Mielessä: Pyörätuolityttö | The Wheelchair Girl 
Minister of Propaganda for the Decepticon Empire:  Blogging Against Disablism Day
More Than Disorganised:  Internalised Disablism
Naked Vegan Cooking:  Special Blogging Against Disablism Day Post
Nightengalesknd:  Why it matters that "ablism" isn't in spell-check
Stand Tall Through Everything:  I’m A Reluctant Advocate
Sticking the Corners:  Tried and True Ways to Eliminate People with Disabilities
The Notes Which Do Not Fit:  That is such an obscure...
Rolling with the Punches:  Support and Independence
This Is My Blog:  Less hostility, please!
Words I Wheel By:  Dis/Ableism, Privilege, and Assumptions
yetanotherlefty:  In-between

Parenting Issues(whether disabled parents or the parents of a disabled child.)

Will Write for Tomato Pie:  Blogging Against Disablism

Impairment-Specific Prejudice

Blogging Astrid:  Mental Illness Is Real Illness Too
Brain under construction:  Monster in the Midst
Endocrine Gremlin:  Blogging Against Disablism Day 2014
The Eternal Pursuit of Love and Laughter:  Blogging Against Disablism Day 2014
The Hidden Village of Aspergers:  Crying On The Webcam
Life In Deep Water:  The Relationship Between Depression & Alcohol & Its Effects On Relationships
Mitäpä jos sä pelkäät turhaan:  Bloggaus vammaisuuden ennakkoluuloja vastaan
The Not-So-Simple Life:  It's Time To Talk 
Sticking the Corners:  Just Say No to Needy Busybodies

Personal Journeys

Posts about learning experiences and realisations authors have had about the nature of disability discrimination and the impact on their lives.

Ballastexistenz:  I am not your fairy tale miracle cure story
Katherine Hayward, my life with cerebral palsy:   Blogging Against Disablism Day 2014 
My thoughts. About me, and ME:  Help!
Never That Easy:  Hulking Out
People Aren't Broken:  An InConvenient Truth

Disablism and Politics
(For example, the political currency of disability, anti-discrimination legislation, etc.)

Write To Protest:  The Right to Life

Bullying, Harassment and Hate Crime

Ballastexistenz:  After this, I am never again putting up with bullies telling me that my medical conditions are imaginary
The F-Word:  Disablism and microaggressions
Radical Neurodivergence Speaking:  Parents are the worst ableists
That Crazy Crippled Chick:  Disability Is Not Your Get Out of Jail Free Card

Disability, Life and Death

Ange's blog:  Carers should act in solidarity - not martyrdom 
Ballastexistenz:  Love, Fear, Death, and Disability
The Voyage:  Stop Excusing Murder

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Wednesday, April 30, 2014

Blogging Against Disablism Day 2014 - Against "Awareness"

Blogging Against Disablism Day, May 1st 2014
Do go read other contributions to Blogging Against Disablism Day 2014
Full image description and attribution at the bottom of the post.

There is a widespread belief in our culture that raising Awareness of illness and impairments benefits disabled people. Even if it were possible to educate the general public about every medical condition there is, this doesn't do anything to address the attitudes which cause inequality. In fact, I would argue that Awareness thoroughly supports those attitudes; disabled people are to be pitied, and if they can't be pitied, they must be hated.

Awareness is about Money.

Awareness Campaigns are primarily money-raising exercises. They raise money for charities and they provide very cheap human interest stories to fill magazines, newspapers and TV shows. Some charities are extremely worthwhile causes, but others are not - the mere association between an organisation and a group of people who need help and support doesn't mean that that help and support is forthcoming.

Meanwhile, as I've been looking around for graphics to illustrate this post, I have learned that one can buy a great number of Awareness t-shirts and accessories from companies who don't even feign affiliation to a charity. So there's money to be made all round.

Awareness reinforces a strict narrative about disability. 

It's tremendously important that disabled people tell our stories - all kinds of stories - but there are only three stories told about disabled people in our culture; triumph, tragedy or villainry. Awareness leaves the villains alone - nobody gives their spare change to help Blofeld walk again.

Instead, Awareness concentrates on the narrative which makes up The Tragedy Model of Disability:

"Keep Calm and Fight Depression"
1. Disaster strikes an innocent.
2. Our hero bravely battles against impairment.
3. The bittersweet resolution, which may be:
(a) Our hero succeeds in becoming at least slightly less disabled.
(b) Death and thus, the end of suffering.

Almost every news story and most fictional stories involving disabled characters follows this pattern. Awareness Campaigns' favourite subjects start out as brave soldiers, promising athletes or straight-A students - all the better if they are about to get married or start their dream job when they become disabled. Obviously, they have to become disabled in a way where they are blameless; for reasons that remain unclear, extreme sports injuries are fine but sexually-transmitted diseases are not.

Then they have to suffer; multiple tests, multiple surgeries, multiple experiments in alternative therapy, moments of despair (but preferably nothing as serious as a suicide attempt). And at the end, even though most subjects will still be disabled, it has to be played that they have overcome their impairment in some way. They may have defied all expectations to taking up macrame! Or they have a relationships! Or even a job!

"Losing is not an option"
When the disabled people are children, a non-disabled parent will often be cast as the hero in their place. Even last week, when a mother murdered her three disabled children in New Malden, near London, newspaper reports told this story, just hours after those children were found dead: We are reassured that the parents didn't know they carried the genes which would cause some of their children to have Spinal Muscular Atrophy until the mother was pregnant with the younger twins (Disaster strikes an innocent); the devoted mother (no quote marks) slaved away looking after her burdensome children with little outside help (Our hero battles against impairment). The children were "likely to spend their short lives in wheelchairs" but now they're dead, which is sad but not the worst thing in the world.

Quite unlike when non-disabled children suffer violent death at the hands of their caregiver - that is the worst thing in the world.

Awareness promotes a dynamic between non-disabled and disabled people which renders equality inconceivable. 

I've written before about the way that doing anything for disabled people, including normal things that family members, friends and colleagues do for one another all the time, can be framed as care and take on a special charitable status. Give your non-disabled friend a lift? That's a favour. Give your disabled friend a lift? That's care, have a medal, bask in the warm-fuzzy of your own philanthropy.

"I wear a ribbon for my hero"
Thus all interactions with disabled people become tainted with this idea of charity. Employers imagine that employing disabled people would be an act of generosity and compassion, rather than shrewd recruitment. Accessibility is not a matter of fairness, but kindness, and can this organisation afford to be kind? Governments are able to frame disability benefits and social service support as a matter of charity, discussing deserving and undeserving cases, as opposed to straight-forward eligibility.

This is a major factor in the abuse of disabled people, with disabled women twice as likely and disabled children three times as likely to experience domestic abuse than their non-disabled peers. Stand next to a disabled person and you'll be assumed to be their carer. Live with one and you'll be assumed to be a saint (see above, re the New Malden murders).

It's a common complaint from folk with chronic illness that they'll see their friends on social media sharing Awareness material, including aphorisms about the importance of loving and supporting someone with a particular condition, when they haven't made personal contact in months. But this is what happens when all interaction with disabled people is reduced to charity; you're not enjoying my company, you're giving your time to me. And if there's no praise attached, what's the point of that?

A little knowledge is a dangerous thing. 

Once I'd received my diagnosis, friends and family would take an interest in news stories about the Dreaded Lurgy. Most of these stories were human interest stories of the Awareness variety; stories about someone with the Dreaded Lurgy. A Day In My Awful Life or My Life-Plan Down The Pan - this sort of thing. I did meet one of my best friends through one such story, but hers was told with far more stoicism and grit than the others.

Anyway, these people with my diagnosis were, naturally, a complete mix. In some cases, I didn't even look like those people; the drugs I was on had made me fat, while some featured dangerously underweight women who struggled to keep any food down. Some of them described managing a part-time jobs, while I was rarely awake for a full hour stretch. Others couldn't walk or even talk, while I was relatively ambulant and nattering away just fine.

Thus, my diagnosis was gently questioned by well-meaning friends and family all the damn time. This was only sometimes skepticism about my account of things - usually the hope was that the doctors had missed something and maybe there was a cure for what ailed me.

Awareness places different conditions in competition with each other. 

"I wish I had breast cancer" - Poster for Pancreatic Cancer Action
Kery Harvey wasn’t wrong to wish she had Breast Cancer, a better understood, more operable condition with much better survival rates than the Pancreatic Cancer which would kill her, aged 24. But the advert, designed to raise the profile of the charity (there’s no information that might promote early diagnosis) is explicit about a message that many Awareness Campaigns aim for; this condition is the worst. It causes the most suffering to the loveliest people, in the most tragic of circumstances.

While there is a large degree of solidarity within the disabled community (hierarchy notwithstanding), communities built around a shared diagnosis are not always sympathetic to other disabled people. It is obviously true that some diseases are generally nastier than others, that some diagnoses are better understood than others and so forth. But, with the help of self-interested charities, illness-based communities can often lead themselves to believe that their problems are unique. Awareness promotes this mentality, pitching one condition against another for sympathy, attention, charitable donations and occasionally even government resources; I have seen on-line petitions demanding funding for very specific areas of research.

When the Robot Hugs cartoon Helpful Advice went viral with the caption “If physical illness was treated like mental illness” (not the artist's own words) it appeared in my Twitter stream on a daily basis for over a week. And every time I saw it, I despaired. People with chronic injuries and physical illnesses get advice about trying harder, thinking positive, avoiding essential medication and so forth all the time. Yes, the stigma of mental illness is undoubtedly worse. But pitching one condition, or group of conditions, against another, can cause hurt all round.

"Helpful Advice" by Robot Hugs.
The dramatic messages of Awareness Campaigns often reinforce or create new stigma.

"Who loves someone with autism?"
My guess is many people but few pandas.
The Caffeinated Autistic has a good summary with links to how, in their attempts to raise money and Awareness, Autism Speaks has described autistic people as if autism is a dreadful mask that the real "normal" children are hidden behind. This includes the now famous Youtube video where one of the board members spoke about contemplating the murder/suicide of her daughter and herself.

The insistence that mental illness is just like any other illness, i.e just like a physical illness, has helped to reinforce the idea that mental illness has wholly internal, biological causes and always can and should be cured or managed with drugs.

Attempts to promote the idea that invisible chronic physical illnesses are real, and not in the imagination of sick people, frequently use language which reinforces the false dichotomy between real physical symptoms and conditions, and imaginary mental health symptoms and conditions, further stigmatising mental illness and making it particularly difficult for people with both physical and mental health conditions.

It's your fault! If you're charged with sexual assault!
Breast Cancer is perhaps the best example of Awareness Gone Wild. In an attempt to market themselves as a fun sexy feminine product, Breast Cancer charities and companies wishing to make money out of pink things have made a fortune, but at the expense of women and others with breast cancer, many of whom are not young, thin, pink-loving white women whose main aspiration in treatment is to Save the Tatas. Barbara Ehrenreich's essay on her experiences with breast cancer is a good example of a great deal of excellent critque of the commerical tactics of Breast Cancer Awareness, which even includes a film Pink Ribbons Inc.

There's a Problem With Our Poster-Boy. 

Poor Stephen Fry. It’s not his fault; everything I've ever read or heard him say about mental illness in general or Bipolar Disorder in particular has been cautious and balanced. He has certainly dented the stigma of Bipolar Disorder or Manic Depression as something experienced by axe-wielding maniacs. However, at the same time, the strong association between the illness and Stephen Fry has very much reinforced the belief that:
  • Bipolar Disorder is a condition associated with artistic genius. People with mental illness who are not artistic geniuses are still either layabouts or monsters. You can't be a regular person with average skills and aspirations and happen to have Bipolar.
  • People with mental illness deserve our sympathy and respect because they are capable of massive success. Our cultural landscape wouldn't be the same without Stephen Fry, and that is why we should be cool about mental illness. 
  • Bipolar Disorder manifests itself in occasional dramatic episodes but is otherwise easy to live with. Stephen Fry is an incredibly busy man, who is - as far as the public can tell - never too sick to work. When Fry attempted suicide in 2012, the public didn’t have a clue until he spoke about it the following year, by which point it was a past event; done, dusted and recovered from.
Stephen Fry quote about the one in four people who have a mental illness.
None of this is Fry’s fault - it is an entirely good thing that he gets to have a private life, and that dramatic events like suicide attempts can be talked about in hindsight and not as dramas unraveling on rolling news (also safer for the rest of us).

The fault lies in a media and a culture which generally under-represents and misrepresents people with mental illness. And people with all kinds of illness. And disabled people in general.

There's a Problem with Our Poster-Girls.

Women are more likely to develop chronic illnesses of almost all kinds. Women are also more likely to seek out others with their condition, join or create support groups, get involved with charities and campaigning. Men and others with chronic illness may struggle to find information and support which is not designed exclusively by and for women. However, when it comes to Awareness Campaigns, stories and images are dominated not only by women, but by a certain kind of woman; our culture's ideal victim.

The "Moving Mountains" Calendar sold to raise money
for the MS Society did feature a variety of women.
She's young, white and pretty. She's usually very slim and often blonde. Her impairment is the only barrier to her being a complete hotty. In fact, if she were fictional and non-disabled, she'd be exactly the sort of person who usually gets murdered at the start of a long-running television show.

Weirdly, her ubiquitous presence on any Awareness Day hasn't really changed the perception that young attractive people can't have chronic illness. That's because, in reality, chronic illness is a fairly commonplace misfortune; Awareness is about sensation; our pretty young victim's plight is tragic because it is unusual. Too unusual to say, be the young lad sitting in the seat reserved for disabled people on the bus.

There are too many conditions to ever be Aware of them all and what's the point anyway?

Pancreatic Cancer Awareness
If you see someone wearing purple or a purple ribbon it may be for ADHD, Alzheimer’s, Chiari Malformation, Crohn’s Disease, Cystic Fibrosis, Dyscalculia, Eating Disorders, Epilepsy, Fibromyalgia, Huntingdon’s Disease, Lupus, Macular Degeneration, Migraine, Multi-System Atrophy, Pulminary Hypotension, Rett Syndrome, Ulcerative Colitis and a whole range of different cancers and other conditions which I haven't heard of. And that’s before we get to matters not related to any specific medical condition, like suicide prevention or domestic violence.

"Hope - Support Epilepsy Awareness"
Presumably, you only ask the first time you see someone wearing a purple ribbon. You might not even ask why someone is dressed entirely in purple.

The question is, is there any specific medical condition that people need to know a thing about?  

"I love someone with Cystic Fibrosis"
AIDS Awareness was one Awareness campaign which worked very well. As well as going some way to address a terrible new stigma, it promoted changes in behaviour which helped to prevent a pandemic in Europe (something we often forget was perfectly possible). But HIV/AIDS was a brand new disease.

Fibromyalgia Purple Ribbon Tree
There are symptoms we need to learn about for purposes of prevention and early diagnosis, but most of these symptoms could relate to a number of serious conditions; new pain, mysterious marks on the body or blood where it shouldn't be - I once saw a list of Symptoms You Should Never Ignore include sudden blindness!

But as far as being Aware of conditions for the sake of people who live with them, what does anyone really need to know?

My neighbour is disabled with what I've heard referred to as "One of those conditions." Perhaps Muscular Dystrophy, Multiple Sclerosis or Myalgic Encephalopathy. I speak to my neighbour, but I've never asked, for obvious reasons. Apart from realising that my neighbour has an impairment and therefore is more vulnerable in bad weather or a power cut, could there be anything, any of us need to know about his specific condition?

The idea that having medical information will improve the way disabled people are treated rests entirely on a view of disabled people as charity cases who effectively need to justify their difference with medical information before they will be treated decently. The idea that disabled people will ever be seen, automatically and unquestioningly, as equal to everyone else, becomes inconceivable if people need to know about our private experiences and medical histories in advance.

Image Description and Attribution:

1. A graphic with red background and black writing reading "Keep Calm and Fight Depression". There is a crown at the top of the graphic. By Keep Calm Studio.

2. "Losing is not an option" - white poster design, the word losing in orange with a ribbon for an o. Other lettering in black. Available as a poster to raise awareness of "any orange ribbon disease" from Awareness Gift Boutique at Cafe Pres.

3. "I wear a ribbon for my hero" - black poster with white and blue writing and a large blue ribbon to the left. Available as Pancreatic Cancer Action features a bald young white woman with some raised areas on her scalp. There is a quote "I wish I had breast cancer." in large bold writing, acredited to "Kerry, 24 #kerryswish". Below reads

"Today 23 people will be told they have Pancreatic Cancer. Like Kerry, this is what they face:
  • Only 3% will survive because of late diagnosis.
  • Most will die within 4 to 6 months.
  • It's the UK's 5th biggest cancer killer.
Pancreative cancer has the lowest survival rate of all 22 common cancers. Early diagnosis saves lives."

There's then a link to the webside at the details of the registered charity number.

4."Helpful Advice" by Robot Hugs. A grid of six illustrations entitled "Helpful Advice". The first features a figure in bed, thermometer in mouth and a figure above them saying, "I get that you have food poisoning and all, but you have to at least make an effort."

The second features a figure with a bleeding stump where their hand might have been. Another figure is saying, "You just need to change your frame of mind. Then you'll feel better."

The third features a figure leaning over a toilet, with another figure saying, "Have you tried... you know... not having the flu?"

The forth features a figure injecting their leg, while another figure says, "I don't think it's healthy that you have to take medication every day just to feel normal. Don't you worry that it's changing you from who you really are?"

The fifth features a figure with a bleeding abdominal wound with another figure saying, "It's like you're not even trying."

The sixth and final features a figure in bed with a drip and a heart monitor with another figure saying, "Well lying in bed all day obviously isn't helping you. You need to try something else."

5. Unattributed graphic found on Facebook as part of the "Light Up Blue For Autism" campaign, featuring a soft-toy panda raising its arm and the caption, "Who loves someone with autism?"

6. Design on a drawstring bag available to buy here to raise money for the US Breast Cancer charity Save the Tatas. It has a black background with white writing which reads, "Save a life! Grope Your Wife! Save the Tatas"

7. "Stephen Fry on mental illness" possibly by rationalhub on deviantART - a poster featuring Stephen Fry's smiling face (a handsome middle aged white man with a slightly wonky nose) and the quote,

"One in four people, like me, have a mental health problem. Many more people have a problem with that. I want to speak out, to fight the public stigma and give a clear picture of mental illness most poeple know little about. Once the understanding is there, we can all stand up and not be ashamed of ourselves, then it makes the rest of the population realised we are just like them but with something extra. - Stephen Fry."

8. "Moving Mountains" Calendar Cover by Steve Yates at Derwent Photography. This photograph shows the silhouette of twelve variously-shaped standing women, some holding umbrellas, on a hill. This 2011 fund-raising calendar featured nude photographs of women with MS in the landscape of Cumbria. All the photos can be seen here.

9. "Pancreatic Cancer Awareness" purple ribbon design available as a grosgrain ribbon from Brychan's Lair.

10. "Hope: Support Epilepsy Awareness"  unattributed, found at A Dog 4 Deeds post for Epilepsy Awareness Month, 2011.

11. "I love someone with Cystic Fibrosis" graphic available free from Cool Graphics

12. Fibromyalgia Purple Ribbon Tree is a tree design decorated by loops of purple ribbon. This is available asa fridge magnet from HomewiseShopper at Cafe Press.

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