Saturday, December 24, 2011

Never Been Thirty-One Before

Today is my birthday and I can safely say this has been the happiest and most productive year of my life. This doesn't mean I've not had rubbish health, worries and a fair few minor disasters. Just that there's been so much good stuff packed around the bad. 

So my year in bullet points...
  • I absolutely loved being thirty. I hope I will love thirty-one just as much. I have never wished to be another age, but I have particularly enjoyed my age. I do now. I feel like I earned thirty-one. I have a lot of stories to tell, but I've still got everything to look forward to. Oddly, entering my thirties has coincided with being met, for the first time ever, with the assumption that I am younger than I really am. Previously, people were always adding ten or fifteen years.
  • This year, things seemed to get done. I'm amazed at what I have just got done this year. Art projects, craft projects, writing projects. This year, it seems, if I put my mind to something, it just happened. Not that I finished everything I started, achieved everything I wanted or didn't have set backs. My health is still pretty lousy and sometimes very lousy indeed. But during good periods, I painted more, wrote more, made more stuff, learnt more than I ever have before in any twelve month period.
  • I've embarked on the first tentative steps towards getting my first novel published. This has been terrifying. It is the closest thing I have ever done to applying for a job.  Fortunately, when you try to sell yourself as a writer, qualifications and work experience aren't very important, or else I'd be in real trouble. It's still very scary. It's not even fear of rejection. I can't really explain it.  
  • I've written between half and three-quarters of a non-fiction book, which will have to remain under wraps until it's done. And I've started on my second novel, which just now, I'm very excited about.  Just now, I'm thinking, "Well, this will be better than the first!" which I think is a very good thing, given that I had had so many set backs and finished the first against such tremendous odds, and that story wouldn't let me abandon it. 
  • I have continued to be brave, in all kinds of ways, many of which remain unbloggable.  However, I am rather proud that when I needed fillings for the first time in my life, I had five of them, in one go, without annaesthetic. Conclusions? Two of them hurt a lot, but it was brief and perfectly bearable.
  • I have worked through and overcome so much emotional nonsense that I carried after leaving my violent marriage last year. At the beginning of this year, I had Post Traumatic Stress Disorder. Now, that's reduced to a bit of a scar which gets sore in damp weather. 
  • I've seen three plays, which is fantastic. I love going to the theatre, I always have, but it takes some doing and it was seven years since I'd last seen a play. Admittedly, the productions I saw this year were too long and pain overwhelmed me towards the end. The best was King Lear, performed in an abbey ruin in Wales, complete with realistic storm conditions throughout the second half. It was August, I was very well wrapped-up but I can't imagine I will get as cold as I was then this winter. It was a superb production, but I came to the conclusion that the play itself is overrated - it's often said to be the ultimate Shakespeare, but I can't see it myself. The oddest was Clytenmestra (the Libation Bearers) by Aeschylus performed in Ancient Greek at the Oxford Playhouse (Stephen reviewed it here) and the other, Dangerous Corner by J. B. Priestley, was fairly odd in that neither the audience nor the players seemed to know whether we were dealing with a thriller or a farce – in any case, we laughed throughout.

  • The only thing I really haven't done enough of is reading. But I did re-read the His Dark Materials trilogy with Stephen, which was an absolute joy. When we set out to take turns to read it to one another, I thought it would take a few years – especially as neither of us can read out loud for long and both of us are prone to falling asleep when we are read to. But we got through the whole thing in about six weeks. Unfortunately, my Texan accent was so bad that Stephen almost cheered when Lee Scoresby died. We also made a CD of poetry for my nephew Alexander, who is an avid reader but doesn't get exposed to much poetry.  At first he wasn't much interested, but now he listens to it so incessantly that his parents must be thoroughly fed up with Roald Dahl's Red Riding Hood, despite Stephen's critically-acclaimed performance as Grandma.
  • I'm so proud of Stephen and everything he has achieved this year. It's been the most wonderful thing to share in his life, and to share my life with him. In the spring, we both spent months totally immersed in Greek Drama as Stephen wrote essays about Aristophanian obscenity in the work of Snoop Doggy Dogg and  prepared for his final exams. He now has a 2:1 BA (Hons) in Classical Studies (Please watch his vlog if you didn't at the time). He then had to deal with both DLA and ESA forms, both of which we managed without too much trouble. He's also whizzing through learning Latin and has learnt how to play the ukulele, very well, in the space of four months. And together we've mastered the art of making Turkish Delight, pain au chocolat, chicken and black bean sauce and the world's best vegetable casserole.
  • We're making a success of the whole having to live with parents for the forseeable scenario. Making this work is an ongoing project and there have been times when we've found my parents particularly difficult.  But we're taking responsibility for things, even if we occasionally behave like the desperate parents of children who can't play nice together - like when fed up of their bickering, we sent my folks for a Segway lesson. What can I say?  It bought as a period of peace and harmony.
One of this year's negatives has been that the political situation for disabled people in the UK has deteriorated during a time when I wasn't up to doing much about it. Now, as various bills which threaten our independence and even our lives reach the end of their process in the House of Lords, Lisa has compiled a list of mostly very simple things you can do to help.

But for now, I thank you for hanging around and cheering me on these last twelve months and I wish you all a Merry Christmas and a very Happy New Year! 

Monday, December 19, 2011

If I were a rich man

Last week, there was a Forbes article entitled If I were a poor black kid, in which a wealthy white guy explained how poor urban black kids might pull themselves up by their bootstraps. This side of the pond, despite being in the middle of a recession, with all the random misfortune that entails for ordinary people, the UK government, peopled (though largely manned) by extremely wealthy, privately educated, white straight non-disabled Oxbridge graduates, are constantly talking about the fecklessness of the poor and the need to send out specialist trouble-shooters to deal with troubled families (which, according to the criteria, mine would be, if I had children). All of which seem to amount to the philosophical standpoint that states
If I were poor, I wouldn't be poor any more.
Then on Friday, David Cameron professed his own vague Christianity, and the importance of Christian values to fixing the country's problems. Presumably Cameron reads the New Testament (ha! As if he had actually read it!) as a morality tale: If only Jesus had knuckled down at his academic studies as opposed to learning to make rustic garden furniture with his father, he might have appreciated what the money-lenders were up to in the temple, and may have been able to afford a decent lawyer when he got into that scrape with the Romans.

I suppose I'm lucky. New Testament Christianity, humanist virtue ethics and the moral codes of almost all other world religions, put me in a rather privileged position. My responsibilities for doing good are greatly restricted by my energy levels and finances. I have the responsibility that comes with being rich relative to most people in the world, but I am surrounded by people who are much richer and far more capable of doing good than I am. As Lady Marchmain says in Brideshead Revisited, the poor have always been the favourite of God, whereas rich people have been desperately investing in camel-moleculising technology for centuries.

So from my position of almost innate virtue and particularly in the run-up to Christmas, when the world freezes over but Scrooge's heart thaws, I thought I should offer my wealthier readers some advice on how to establish a soul as sparkly clean as my own.

If I were a rich man...

Naturally, I would biddy-biddy bong for much of the day (though perhaps not all day long, as the song suggests – I'm no hedonist). Otherwise, there are a few things I would do to make sure that I fulfilled my responsibilities to the world which made me so wealthy.

I would

Pay every penny of tax I owed, publically volunteer to pay more tax and campaign for higher taxes for people like me.

All governments waste money, but there are lots of things which it is both most efficient and desirable to achieve through tax, as opposed to individual enterprise, charity, volunteering, private armies and so forth. Quite where the balance lies between what tax should pay for and what should be left up to individuals is up for eternal debate, and having a particular position in this debate is the foundation for some of our political parties. However, some of this stuff is the basis of a civilised society – like emergency services available to everyone, free school-age education, free healthcare and the welfare safety net.

In the UK, there is no mainstream political party who argues against the sanctity of these provisions, but the quality of them is fast being diminished by the current government, because of the crash. Frankly, this lot are attempting to solve the financial crisis by taking money from the poorest people and then scapegoating them as the root of the problem. This is having only mixed success; poor people are an easy target, but it won't help the deficit because poor people are not very costly and we will pay for them, one way or another.

The most obvious answer is that the very wealthiest people should pay more tax. They can afford to. The Robin Hood tax was a brilliant idea. The idea that we risk scaring away wealthy people is just daft. The only wealthy people we risk losing through high taxes are greedy bastards. So Scotland lost Sean Connery that way, but then I never found his accent convincing.

I'd also

Use, Support and Get Involved in my Local Public Services

All too often, wealthy people deny public services their social capital by sending their children to private schools, using private healthcare, living in gated communities and so on. Public services need wealthier people in order to survive and prosper. Public services are great! They are either free or massively subsidised at the point of delivery! They are interconnected and whilst not perfect, have developed with the public interest in mind over many decades. The private alternatives only want to make money out of the people who use them, which is why private healthcare-users are persuaded to have all kinds of bits and pieces removed - wisdom teeth, foreskins, appendices, self-esteem, life savings - regardless of medical need.

It's no accident that if you drive around London, public streets inhabited by wealthier people are better kept; they are cleaner, road surfaces are in better repair, they are safer. This isn't because councils quietly decide to privilege wealthier residents. But wealthier residents are more likely to be home-owners, they are more likely to consider themselves entitled to good roads, be able to organise themselves and make a fuss if there's a problem. And they are more likely to be listened to.

When wealthy people use their social capital to make a difference to other public services, they really do make a difference.  The great tragedy for our country at the moment isn't that the coalition is dominated by the Conservatives, a party which naturally leans towards the interests of the individual, but that we have a government dominated by youngish rich people who have never had to rely on the services that the rest of us use all the time.

I would also

Have a collection of electric cars and have a home which generates electricity.

Poor people have very few options when it comes to their environmental responsibilities. Unemployed people need to heat and light their homes whilst everyone else is at work. Disabled people are often unable to use public transport and have to use the pre-packaged or disposable option. Poor people often have no option to shop ethically and, especially in cities, poor people often live in tower-block housing where household rubbish cannot be sorted and there are no easily accessible recycling facilities. However, as a rule, because poor people buy less stuff, go out less, live in closer proximity to others and have fewer holidays, they generally have a lower than average carbon footprint.

For middle-income households (£40K is apparently now average for a household with two working adults – yikes!), some environmental matters are dead easy, but the bigger investments are difficult – you might be able to afford to install solar panels, or buy an electric car, but these things have a large initial outlay, which only pays you back over a period of years (and in the UK, government grants have just vanished). Meanwhile, as people who buy more stuff and travel about more, middle-income households are usually quite bad for the environment. I think it takes a lot of strength for someone in this bracket to do the right thing – so if you are and you do, well done!

If you are seriously wealthy, however, there is no excuse. People who own extensive land and property, but are still taking power from the grid as opposed to putting  itback, people who have a collection of cars and none of them are electric? Well they are a burden on the future of humankind.

I'd also

Make sure at least 10% of my income went to charity, including some to

  • schemes which make a massive difference to people's lives. For example, Deworm the World, which keeps millions of children in good health and in school or Camfed which ensures the education of girls. If you educate girls in Africa, then they are much more likely to have healthy and comfortable lives, they are much less vulnerable to HIV, they are likely to have fewer babies, which increases the prospects for them and their children, but it helps to slow down population growth with a view to saving the world. Giving girls an education is by far the most effective form of population control – more effective than even then most draconian measures.
  • schemes which help save lives. For example, organisation such as the Against Malaria Foundation are extremely open about how money is spent and really can save a lot of lives for your lolly.

For a long time, I imagined that all working people who considered themselves Christian paid 10% to charity – I thought it was in the rules, like Zakat in Islam. The conversation that disillusioned me was with someone whose household earnings were in excess of £50K, but who explained that they had a high mortgage and nothing to spare at all.  If Cameron was, as he claims, vaguely Christian, he might consider giving up at least 10% of his massive fortune and do so very publicly, to set an example to his colleagues and associates.

Poor people can afford to give little if anything to charity, but nevertheless give a far greater proportion of their income than richer people. If you are hard up but not stony broke, one way of helping others is through Kiva loans. You can loan someone in the developing world to improve their life or business, and you will get paid back.

Finally, if I were a rich man, I would

Apply vigorous ethics to all my business and consumer choices

Poor people can not always afford to make ethical consumer choices. For example, if I couldn't afford to buy Fair Trade teabags, bananas, chocolate etc., then I could do without and I buy almost all my clothes second hand. But when I need knickers, second hand isn't an option and I can't afford £10 a pair for Fair Trade – I have to buy cheap knickers that were probably made by people working in very poor conditions, paid much less than I have to live on. But it's those knickers or no knickers. If you do spend £10 on knickers, I suggest Who Made Your Pants?.

Rich people, however, not only have the money to make all ethical consumer choices, but they often have lifestyles which allow them to make a difference in all kinds of contexts. They can choose to look after their employees, even choose to employ people who others would not. They can choose to invest in good things and withdraw their investments from bad things – or use threats to withdraw in order to improve business practices.

Rich people can afford to to do so much good and they have a responsibility to do so. Making money is not, in and of itself, a virtue. Using money to make the make the world a better place, choosing to make less money than you would if you sacrificed the interests of other people and the environment, all that leaves a much more worthy and enduring legacy than the number of digits in the profit margin.

For better responses to If I were a poor black kid which actually address the American, urban and black kid bit, see
The Atlantic - A Muscular Empathy and
Pursuit of Harpyness - Uncle Whitey Explains It All with poignant David Simon quote.

Monday, December 12, 2011

The Bechdel Test & Small Furry People-Eating Aliens

Often, when we complain about inequality in popular culture, we are told that it’s just entertainment. Our expectations are way too high. In order to be light and entertaining, all kinds of isms and imbalances must prevail. The high-minded ideals of equality are incompatible with the crowd-pleasing goals of the low-brow.

But then there’s Critters.

My expectations couldn’t have been much lower than when Stephen rented the movie Critters. I read the synopsis; it’s about an invasion of small furry monsters from outer-space who eat any animal or person in their path. So I thought Gremlins rip-off and if I actually ever saw Gremlins, I've forgotten it. But it’s really all right. No, it’s fun. We ended up renting all four Critters movies. And all four of them passed the Bechdel Test.

To pass the Bechdel Test, a movie must
(1) feature at least two women who (2) have a conversation which (3) isn’t about a man.

Glance over your DVD collection; many great movies fall at the first hurdle. Some episodes of Doctor Who, or the anachronistically-egalitarian Merlin fall at the first hurdle. The Godfather, Casablanca, all the Star Wars and Indiana Jones movies and all nine or so hours of Lord of the Rings don't feature a single conversation between two women. Most Hitchcock movies fail the test. And the point isn’t that these individual movies are failing women – there are many brilliant movies which don’t have a single women in them (Das Boot, The Thing, The Great Escape, Shawshank Redemption etc). But given that half the world’s population are women, and real women are involved in most of life’s dramas – domestic and global – the overall pattern points to a big problem. And the fact that there are plenty of movies which don’t involve submarines, men’s prisons or small scientific expeditions in remote locations and still don’t manage to involve more than one woman, suggests that some movie-makers don’t count women as people.

When a deeply unsophisticated comedy horror movie passes the test with flying colours, it only goes to show that this is the case.

Critters 3 was the best of the quadrilogy and is notable for featuring a tiny wee Leonardo Di Caprio (he was fourteen or fifteen at the time, but looks eight). The Critters (furry alien creatures) hitch a lift to an urban apartment block, where an evil landlord is trying to force his tenants to leave so he doesn’t have to compensate them when he sells up to developers. The protagonists are the teenage daughter of one of the tenants and her new friend (Di Caprio), the stepson of the evil landlord. Loads of cliché; the girl’s mother is dead and in his grief, her father has become distant, we have grandparental elderly couple upstairs, the two teenagers have a few romantic moments together, etc.. But the girl has conversations with her neighbours and her women neighbours are complete human beings. Even the fat lady down the hall, whose size is the subject of some humour – she has her plus-size lingerie eaten by the aliens - is a complete and sympathetic character. The love interest for our heroine’s bereft father is brave, physically active and her braless sexiness is underplayed.

And nobody would have noticed. This certainly isn’t a feminist film, it’s not in any way a feminine film. There are more masculine characters than feminine characters. But it manages to treat girls and women as if they are as complete human beings as boys and man. If a film who's mere title suggests the absence of sophistication can succeed in fulfilling this most basic principle, why can't almost every movie we see?

Incidentally, Stephen said he’d not heard good things about Critters 4, and I joked it might be like the Alien 4 of the quadrilogy. Okay, so Alien: Resurrection? It’s a total rip-off of Critters 4. In Critters 4, the mercenary crew of a spaceship dock in a space station where they discover evidence of genetic experiments to create a perfect alien creature-as-weapon. They’re then chased about the station by aliens (if small furry ones). And [spoiler alert] they have to race to leave as the station self-destructs. There are entire set-pieces which look like comical versions of those from the forth Alien movie. This was made in 1992 - five years before Alien: Resurrection. It even has Brad Wormtongue Dourif in it. But it is funnier.

It’s also the weakest film. I know this because to be honest, I didn’t see all of it. The first time we sat down to watch it, I fell asleep after about half an hour. The next time, we started from where I dozed off and I was asleep again half an hour after that. But it had a woman character and a feminine talking computer and they do have conversations which are not about men. So that's something.

Thursday, December 08, 2011

Dog Rest Ye, Terrier Gentleman

The Bull Terrier Nativity

So this was by far the oddest craft project of 2011. It wasn't my idea, but when people I care for were contemplating paying up to £100 on a fimo Bull Terrier Nativity Set on eBay, I had to step in and volunteer to make one myself. I used Sculpey, which is cheaper than Fimo, and probably used about £15 worth of polymer clay.

Stephen used a lathe to make wooden cones for me to build the figures around, to stop them keeling over mid-production. Originally, I'd intended to remove the cones once the clay was cooked, but then decided they made the models more stable. Also, they got stuck.

The Three Wise DogsI haven't played with polymer clay for years - perhaps seven or eight years at least - so when I volunteered I was kind of thinking the project would eat up half of December and maybe I wouldn't be able to pull it off. So, whilst it wasn't my idea and part of me keeps thinking this thing I've made could win prizes for poor taste, I'm really rather chuffed about how it turned out.

Stephen made the manger in about half an hour and his Dad made the stable backdrop in a little longer than that.

The Puppy JesusI hadn't met any bull terriers until this spring, when I made friends with two miniature bull terriers, who are rather akin to albino pig-shark hybrids. They're not nearly as bright as my border collie or poodle compadres and they move around as if there are no obstacles of any kind, anywhere – if your legs are in the way of where they want to go, they're going to go through them. But they are extremely friendly.

The nativity set is a present for someone, who at the time of writing has no idea what's in store for them. They're coming round on Saturday. I hope it makes sense to them.

More pictures on Flickr.

Image Description: Possibly defies description. Models of English Bull Terriers made out of coloured polymer clay, representing characters from the nativity (Mary, Joseph, Jesus, a Shepherd, an Angel and three Wise Men/ Dogs). In the second picture, the wise dogs are bearing gifts; sausages, a bone and a teddy. In the third picture, we see Puppy Jesus, a puppy wrapped in swaddling clothes, in a pale wooden manger with wood shavings for straw.

Friday, November 25, 2011

On Languages, Both Dead and Deaf.

For the past few months, I have been teaching Stephen Latin and we've both been trying to learn some British Sign Language.

Somehow, Stephen managed to get a degree in Classics without any Latin learning so he thought it was about time he got some. I did three years of Latin at high school and loved it. I also enjoyed German and French, but you don't ever have to speak Latin. There were no spoken exams based on the premise that you're a tourist visiting ancient Pompeii, your friend has really annoyed you on the coach trip there and now you want to find the Coliseum so you can feed him to the lions. We sang Latin in the school choir but we knew that, whilst nobody can say for certain, it's unlikely that Italians from two thousand years ago pronounced things in much the same way as BBC presenters from the 1950s.

Our Latin books were also brilliantly designed and so when Stephen expressed his wish to get on an learn some Latin, I found a copy of part one of the Cambridge Latin Course on eBay. Most British people reading this who learnt Latin at school will have learnt with these books, starting with stories about Caecillius, a merchant who lives in Pompeii up until the point Versuvius erupts. These stories had such a strong influence on the those who studied them that the screenwriter James Moran wrote a Doctor Who episode The Fires of Pompeii in which the Doctor and Donna meet Caecillius, his wife Metella and son Quintus, as well as a daughter who wasn't there in the Latin books but is involved in some alien cult or other which brings about the eruption of Versuvius. It rocked.

But every bit of Latin you're given is part of the story. It starts off very basic - Caecillius is in the study, Caecillius is writing in the study etc. - but pretty soon you're learning about the affairs of slave girls, gladiators, what goes on at the baths and even werewolves. There's a lot of humour – the very first story, told in very simple sentences and entirely in the present tense is about a dog who creeps into the kitchen while the grumpy cook is asleep and startles him. The characters die very Roman deaths, and there's some gentle titillation, although not nearly so much as a classroom of eleven and twelve year old girls found in it when we read it in the first year of high school. The mere concept of public baths was enough to set us off giggling for a full half hour.

So when I say I've been teaching Stephen Latin, we've really been working through the book together and I've been trying to remember my vocab when he gets stuck.

Latin has a surprising amount in common with British Sign Language. This was something we both fancied doing, partly because we eventually want to be able to communicate in all the languages of the British Isles, but it also gives Stephen and I another means of communicating when talking or typing is difficult.

Both Latin and BSL do, in a sense, simplify language – there are less “words” (although in Latin, this is compensated for by many many more word-endings). There are also different word-order to English, something that surprised me about BSL - I think I'd seen people in movies speak and sign at the same time, which I realise now would be extremely tricky*. But it's funny how easy the rearranged sentence is to cope with; Stephen went to hospital school, where the only non-English language he learnt was that mysterious jagged script employed by doctors and whilst he learnt how to read and write beautifully, he learnt nothing about the formal mechanics of grammar. Yet he doesn't start talking like Yoda when the verb appears at the end of the sentence.

To English readers, meaning in both Latin and BSL implies itself in the same kind of way. In BSL, meaning obviously implies itself through the action - verbs often look like the action they refer to. The action for eating and drinking, for example, look like a mime for eating and drinking. In Latin, eats is consumit, like consume, and drinks is bibit, like imbibe. In fact, I reckon perhaps two thirds of Latin verbs have some English word or words derived from them, which can give us a clue as to what they mean; sedet (sits), dormit (sleeps), spectat (watches) clamat (shouts) and so on. To an English reader, reading Latin is a little like looking at strangers in our family photographs from 1920 and recognising the eyebrows, cheekbones and jaw-lines of people we know intimately.

Except, you know, Latin is a wee bit older. British Sign Language is also many hundreds of years old. Both of them are great languages, made relatively easy by being restricted to one medium (Latin is always written, BSL is always signed). Both of them teach us things about writing and speaking in English.

By the way, here I am this week over at the BBC Ouch!

*As an after-thought, it occurs to me that this might not apply to American Sign Language, but ASL is based on Langue des Signes Française, so I have no idea. Any ASL-users about?

Friday, November 11, 2011

Be Nice & Grow A Thicker Skin

There's been a lot of talk about on-line abuse lately. I think it all started with the brilliant S E Smith's post On Blogging, Threats & Silence, then there were posts at Geek Feminism, Hoyden About Town and others. In the last week or so, there's been a load of UK newspaper and blog coverage of the highly threatening on-line abuse of women writers and bloggers (round up of British articles and posts here). Yesterday Louis Bolotin pointed out that disabled people are often victimised on-line in much the same way. I know from my friends that LGBT writers and anyone who writes about race is subject to the much same kind of thing, tailored to the appropriate bigotry.

Lots of silly things are said in response to these kinds of complaints. Much of it is along the lines of “If women complain about something happening to women, they are implying that nothing bad happens to men and men are to blame for everything.”

Certainly, men experience on-line abuse but much of it is very different in nature and women can't speak for men's experience*. Meanwhile, on-line misogyny is a uniquely equal-opportunities form of hatred; few of the writers above were naïve enough to imagine that, from behind the mask of anonymity, nasty women who hate other women won't take the opportunity to use the sexualised and violent language which isn't so readily available to them off-line.

However, I wanted to focus on two common and contradictory pieces of advice that are given to women and others in the fact of on-line abuse.
  • Be Nice and
  • Grow a Thicker skin

Be Nice

There is an argument that women who experience on-line abuse just need to be nicer. In the comments threads under the posts and articles about this, there were frequent references to certain writers' tone, or the fact that a writer has said once something a bit strong or little mean about a particular group, a politician or another public figure. Of course, some of these writers had said silly and provocative things, but none of it came close to the abuse they had received. Even women victims of domestic violence are sometimes advised not to wind their partner's up, not to nag, not to show any anger or be difficult. For a very long time, our models of femininity have involved an element of passivity and infinite tact. It is ladylike to say nothing or only speak very calmly, to choose words very carefully and to try and take into account everybody's needs, desires and point of view.

Now, I've received very little abuse here, and as well as the other factors (chiefly low traffic and an extremely well-mannered and physically attractive readership – the latter point being irrelevant to this, but it happens to be true), one reason is that I don't often write when I'm angry. I'm not angry very often in any case, but when I am, it kind of shuts me down. Now, there are a few things to say about that.

The first is that one of the reasons I get relatively low traffic is that I don't write when I'm angry. When a person or an organisation or the government do something totally outrageous, I don't often have the strength to respond to events as they happen. People who have their finger on the pulse and express themselves with great passion are far more readable to greater numbers.

On the one hand, this means there's nothing forced or vitriolic here – some people with their finger on the pulse like to apply pressure to the jugular vein of debate. On the other hand, this means that I don't produce stirring polemical posts which can change people's minds about a subject and stir them into action. I mostly write about things that I am trying to understand, which is interesting to some people, but it doesn't stoke any fires in any bellies. It shuffles the embers about, at most. And people like their belly-fires stoked. The big, important bloggers are highly polemical bloggers. They get worked up about stuff. Their readers get worked up about stuff.

And so when readers disagree with what these bloggers say, they tend to get cross. This part is inevitable; if you contradict a view people are invested in, you may meet a few receptive ears, but you're going to make smoke come out of others (the anatomical metaphor thing has become a bit of a compulsion, sorry). What is not inevitable is that once enraged, people should respond with personal abuse, sexualised insults and threats. That's not inevitable at all, but it happens more often to people who are not afraid to put anger and passion behind their words.

On the whole, people who disagree with me have always done so politely – even on big sticky subjects like abortion or euthanasia. But that's not because I'm doing anything better (or worse; I'm not ashamed of my place in the blogosphere) – I'm doing something completely different. Political debate and social reform need impassioned voices. That sometimes means crossing over the line from what some people regard as being nice

There are some people who are affronted by women and other marginalised people speaking up. These include inadequate men for whom the supposed inferiority of women is a comfort and who hate for that to be challenged. Women who are themselves invested in a particular version of womanhood – especially, but not exclusively, motherhood – can be among the most vicious critics of women who have different ideas or behave very differently. As Nicky Clark discovered, even expressing an opinion about language can get a woman accused of being a bad mother. S E Smith received violent and sexualised abuse just because she wasn't keen on Glee.

Grow a Thick Skin
or If you can't stand the heat, get back to the kitchen.

A thick skin is overrated. A thick skin involves some acceptance that others will mistreat you, which in turn requires mistrust and cynicism. It is not a healthy thing to toughen up in the face of abuse – it's not good for your mental health or your humanity. When others are against you, the trick is to keep a hold of yourself, your sympathy and sensitivity. Those things are virtues, and ones which are in no way incompatible with strength, courage and so on. You need strength and courage to remain sensitive to other people's feelings and to keep your faith in other people.

Everyone who writes on-line gets abuse, they say. One commenter – probably more than one, I didn't get that far down the threads – even suggested that everyone gets the same abuse, but women's hormones and genes made them react differently. Ha ha.

This is another impossible message about femininity. Women overreact, so when a woman complains about mistreatment, whatever she says happened, she must be overreacting – if she's not lying out of malice or the need for attention. This is less likely to make women shut up than the Be Nice message, but it is more likely to keep women silent about their bad experiences – especially shocking private experiences like sexual harassment and violent threats. Anticipating the assumptions of others, no woman wants to speak out and be seen to overreact.

I don't believe that the world is full of over-sensitive people, but everyone has different squidgey bits; we squeal when poked in different places. So if someone is poked in the knee and squeals, when your knees can bend around the wrong way without so much as a twinge, you might think they're being a wimp. I have known a few people who claim to be very difficult to upset, but usually they just have rather novel sensitivities (not that I go about poking at people to find out what upsets people, either metaphorically or literally). A truly over-sensitive writer objects to any criticism or debate at all. Ordinarily sensitive writers object to abuse. That's utterly reasonable.

People who are genuinely impervious to the opinions of others are lost to the rest of us. They're dangerous, frankly. Some public figures, including writers, have had to come to terms with the idea that some people will always think they are scum. But people who are not afraid to upset anyone? Terrifying.

* Another reason I don't get much gendered abuse is that while there's a lot of personal information on here, it's spread out, and lots of people landing on a random post have almost no information about me. So I have had comments questioning the length of my penis, assuming I have one, and assuming I care.

Monday, November 07, 2011

In bed with my paintbrush

The artist with prize-winning 'Hydranga'I've been rather quiet here lately due to a combination of computer problems, minor but disruptive health problems and a fair amount of stuff going on. Life, however, is rather wonderful.

As anyone who is anyone in the art world knows, I won first prize in the Aberaeron Holy Trinity Church Summer Craft Fair Painting Competition (Painting of a Flower). It cost 50p to enter and the prestigious prize was £1. And there were, like, twenty other paintings. As far as I am concerned, this makes me a prize-winning artist. Like Tracey Emin, but with better personal hygiene*.

Stephen's Dad made me a device so that I can paint in bed. This is wonderful and has revolutionised the way I paint. No longer must I wait until I'm well enough to sit up in a chair for a while, then paint against the clock with increasing levels of pain, trying to get to a certain point before I have to stop and wait for another window. I can take my time. I can rearrange myself and my pillows. I can take breaks and carry on looking at what I've done while I'm resting, able to reach for a brush if I see that something needs touching up.

Stephen & IThus my painting has become more relaxed and brave. I'm experimenting much more. I seem to be painting faster, although that's probably just that I can do it for longer at a stretch. And that's much better for me. No more angst about a picture I've been fiddling with for five minutes a day for weeks and have now spent so long looking at the thing that I'm never going to be happy with it.

I didn't think this was possible; of course people can paint in bed (Frida Kahlo did) but only when you can't get out of bed at all. I didn't think anyone would let me. But apparently I can do whatever I like! Almost.

TGranny & Alexhis is a painting of my nephew Alexander (5) and my Granny Kelly (87) and I reckon the best painting I have ever painted.

I've also been writing a very great deal, made some tentative steps into learning British Sign Language and I've been teaching Stephen both Latin and the ukelele. We have four ukeleles now. Imagine! Two at my folks' place, two at Stephen's, so we don't have to transport them backwards and forwards. It's another disability accommodation. When we're in one place for good, we'll downsize the collection. Maybe.

[Image description: Top - a photograph of brown-haired white youngish woman smiling and holding a picture of a slightly decaying hydranga. Middle - a painting of the same white woman with an extremely handsome dair-haired and bespectacled young white man. Bottom - a painting of a young blond white boy cuddling an elderly white-haired white woman, both smiling. ]

* This is a reference to her famous installation My Bed which won the Turner Prize and made her famous - I didn't mean to imply that the lady doesn't clean her teeth or something. Except perhaps for artistic purposes.

Tuesday, September 27, 2011

The Disability Hierarchy 6: Old Age & Treachery

An A&E nurse friend described with despair the sharp increase in elderly people being admitted to the Casualty Ward around the third week of every December. At first I thought perhaps she meant that factors conspired in the same way that road accidents increase during the week after the clocks go forward - perhaps a combination of dropping temperature and old folk scrimping on heating in order to free up cash for Christmas. But no, she explained, at this time of the year, many people would attempt to get their elderly relatives put into hospital, so they would be out of the way over Christmas. In some cases, chronic conditions would become suddenly and mysteriously unmanageable. In some cases, there would be “falls” and other injuries.

Our cultural attitudes towards older people are fantastically bad, and this cannot be divorced from our attitudes towards disability. I've always felt that the temporary able-bodied as a way to describe non-disabled people is inaccurate on two counts – the first is the problem with the term able-bodied, the second is that many people will live out their lives without disability. However, if we live long enough, eventually everyone will be treated as if we are disabled. Older people are discriminated against because they are seen as the most useless, unattractive and burdensome disabled people of all, even when they have no impairments.

And whilst this is a terrible thing for elderly people, it effects all of us who have got more than a few years life expectancy. Disabled children lose status when they become adults. The ageism that has the media favouring the faces, voices and concerns of people in their twenties and thirties in general is even more profound for disabled people. If you google for images associated with Breast Cancer Awareness, you'd think that breast cancer was something that exclusively effected young white and conventionally beautiful women (and you might think that the point of the exercise was saving women's bosoms rather than saving lives). Breast Cancer is an important cause to many people because everyone knows someone who has or has had it, but four out of five of those people will be post-menopausal. Meanwhile, while we accept most younger disabled people are capable of an active life, sometimes physically, but if not then socially, perhaps academically or intellectually, an active retirement invariably means a non-disabled retirement. I think there are a number of factors here.

First off, older people cannot play the role of tragic hero when faced with impairment. There's the obvious and understandable fact that just as death is a different thing at ninety than it is at nineteen, a ninety year old has less to lose when she acquires an impairment than a teenager. A younger person loses more aspects of their future; a younger person who becomes disabled might miss out on educational or work opportunities, even the opportunity to have children, all of which will be behind the ninety year old. This is not to say that the losses of the ninety year old are not significant – and there are ways in which it might be worse. But I think it is understandable that we consider the loss of becoming disabled as less severe when someone is very old.

What is much less reasonable is that we regard severe levels of suffering and impairment in old age as inevitable. In fact, while many of us will acquire a collection of minor impairments and health problems as we grow old, a gradual miserable decline of physical health and mental faculty is relatively uncommon. Most of us will die of cancer, strokes or heart attacks – most of us will go relatively quickly (not that these three always guarantee a quick end, but they often do). Life expectancy in the UK stands at around 80, so in the last decade of an average lifetime, only one in twenty-five people will have dementia and about half will have arthritis (although there's arthritis and there's arthritis – for some people it is a constantly agonising condition, for others it is little more than an episodic increase in aches and creakiness).

Alongside dismissing the impairments of older people as inevitable, not proper conditions in themselves and therefore not deserving of disability status, we congratulate older people who are fortunate enough to be healthy and independent as if they have wilfully defied ill health in much the same way we congratulate younger disabled people as brave and heroic just for getting on with their lives. Meanwhile, young and middle aged people feel the stigma of old age associated with certain medical conditions (e.g. memory-loss, arthritis, incontinence) and especially with medical and adaptive equipment. When resisting equipment, people who have moved beyond the phase of “I don't want to feel disabled” often have a phase of “I don't want to feel like I'm old”.

I've already mentioned mobility scooters, and the way that it is okay to both laugh about them and propose that their use should be restricted because they are associated with doddery old biddies who run amok, knocking into pedestrians and leaving damaged street furniture in their wake. Young wounded war veterans who use wheelchairs or crutches are very likely to be involved in drinking culture, but it would be absolutely scandalous to joke about our brave boys being a danger to themselves and others and proposing that their mobility aids be confiscated until they sobered up. In fact, it's much more socially acceptable to joke about old people in general than it is to joke about disabled people, in a world where these categories are conceived as mutually exclusive.

Older disabled people just don't count for anything. Their practical difficulties count for less – criteria for disability benefits and social care for older people are massively more complex and limiting than for younger people. Their suffering is often dismissed altogether. We frequently see the phrase “older and disabled people” to refer to the group who use disabled access and facilities, when “disabled people” ought to do (if older people need these facilities, they too are disabled). I strongly believe that the potent cocktail of ageism and disablism makes older people suffer more and die sooner than they might otherwise.

My Gran had chronic debilitating depression for years and was dismissed as a miserable old woman (which she was and one preoccupied with her health, but that didn't mean she didn't need help). I realise that many younger people with chronic mental ill health struggle to get much more help than an anti-depressant prescription, but I've never heard of any older person getting any kind of talk therapy (outside exceptional projects that make the news or journals). In general, people get happier with every decade of maturity; people acquire the psychological equipment to cope with things, they gain a better perspective on life's troubles and often move to a position of simpler needs, hopes and fears. Yet for some reason, old age is seen as a naturally miserable time. Doctors and even family members declared that my Gran was just old, despite her considerable suffering and sometimes very bad behaviour towards others.

Now Gran has dementia. She's not depressed any more. She is sometimes very frightened, but sometimes she is more jovial than I have ever known her, giggling about silly things – even laughing at what she forgets. She doesn't know who most of us are and gets confused about her closest relationships, frequently treating her daughter like her mother. She often doesn't eat without encouragement, she struggles a great deal with her medication despite having an all bells-and-whistles doohicky that dispenses her pills on a timer and makes a noise to tell her when to take them. She has falls, but she is no longer able to think to press her personal alarm when she's in trouble. But the doctor reckons she's not any worse than she was two years ago when she was still keeping rough track of her sixteen grandchildren's birthdays (those memory tests are perhaps the most unscientific diagnostic tool currently used on the NHS). My Gran was not a very nice person, but now she is fantastically vulnerable and if it wasn't for the few family members she managed not to alienate during her depression, I don't know what would happen to her. Even if she is no longer quite her self, there is a person there who is a long way short of losing the capacity to suffer.

A lot of people kid themselves that people will naturally look after those more vulnerable than themselves. Very many people operate that way; very many people have a sense of responsibility towards those around them who have less capacity to take care of themselves. But this is something we've learned and as such, it is something that some people haven't learned. As long as older disabled people are invisible to the rest of the disability rights movement, a big group of us – including our future selves – will be subject to some of the worst abuse and social isolation, at a point in their lives when it can easily get too late to make things better.

But hey, here's a positive and quirky story about an older disabled person and his owls

Friday, September 16, 2011

Domestic Violence. Ha ha ha!

I haven't finished with the Disability Hierarchy, but this came up. In this post I'm going to show you a distressing image and discuss some distressing messages.

When I first left my marriage, I was used to being shouted at every day and being subject to violence every now and again. I thought I had become desensitised to conflict and aggression, but of course, as soon as it stopped and I began to recover, I became hypersensitive. The sound of people shouting gave me flashbacks or sent me into a panic attack and I became paranoid that other people were angry with me. I found myself in the strange position of being able to cope with fairly extreme violence in films, but falling apart when a character punched, slapped, pushed or even yelled at another character in a domestic context.

Around this time, I noticed the amount of domestic violence used for comic effect in movies. It generally goes like this
Male character is trying to get on with his adventure. This is either a comedy or an action film that doesn't take itself too seriously, so his adventure has some ludicrous elements (although it will all turn out well in the end). Female character – wife, girlfriend, occasionally mother – identifies his behaviour as ludicrous and becomes upset. They argue, he says all the wrong things and she ends up slapping him, hitting him with something, kicking him in the goolies etc.. He goes on his way and continues his adventure, intending to make it up to her – or win her back if she's told him to go to hell – when his mission is accomplished.
It's funny because the protagonist is a tough guy who is going to bring down some really bad guys and she's just a woman. A staple of comedy is when someone we perceive as vulnerable (e.g. a mouse, a little old lady, a small boy left home alone at Christmas) attacks and defeats someone we had hitherto perceived as invincible (e.g. a cat, a trained assassin, a pair of hardened burglars). This is why it is funny for our tough hero, loveable as he is, to be humiliated and assaulted by a woman. And it doesn't matter. Women's violence is so utterly inconsequential that it is actually funny.

Poster: You bought my ring from where?This advert is from the US and originally appeared here (since removed). Hat tip to Ami Angelwings.

Image Description: A poster-style ad dominated by a picture of a white couple. In the foreground, a man in his thirties holds a steak up to one side of his face. There is bruising beneath the other and another bruise or possibly a birthmark on his neck. In the background, a woman stands with her arms crossed, scowling at him. Below the picture reads in capital letters, “You bought my ring from where?!” in large red letters. In a smaller typeface there proceeds an advert for “Zachary's Jewelers” and in particular an invitation to chat to their engagement ring expert.

Personally, I think it is an appallingly ineffective advert. Your average man who is anxious about buying an engagement ring will likely be in the throws of tremendous romantic feeling, anxious above all things to please a person who he believes to be thoroughly lovely, maybe even anxious about whether they'll say “Yes”. He's thinking romantic thoughts and his greatest fear will be their disappointment or rejection. At such a stage in his life, a joke about his true love being a status-obsessed thug is not going to go down well. I worry for them both if it does.

Any man who is genuinely anxious about buying the right engagement ring (or anything) out of fear of assault needs quite another kind of helpline. After he's phoned the police. And given up on the idea of getting engaged to this lady or indeed seeing her ever again.

Oh sorry, what am I thinking? Women's violence is so utterly inconsequential that it is funny. Ha ha ha! And the joke is on her. Because everyone knows that women are insatiable materialists! And the engagement ring is a big status symbol; all their female friends will see it and she wants them to admire it and ask where it came from. So of course she'd be upset if it came out of a Christmas cracker. And the poster merely exaggerates this concern about her upset for comic effect. We sympathise with the bloke, but he should know what women are like! And it's only a black eye. Men are made of tougher stuff than to care about that. After all, they'd have no problem defending themselves if they really needed to.

I have had many black eyes. I don't know what the normal quota is, but I seemed to get a lot as a child. First one I ran into a drainpipe (like you do), I got another from a football when I miscalculated a header (like I always did), I got quite a few from toppling over and then as an adult, I gave myself one by bashing my head against a bedside table in my sleep. A black eye is no biggy. But I've been assaulted in ways that didn't bruise at all and that's a different kettle of stinking rotten fish.

It's not about being injured and whether you can cope with pain, bruising or whatever. When someone assaults you, it is scary. When someone who says they love you, who you trust and live with assaults you, there are ways in which it is even scarier. There's a sense that if this can happen – that a loving person can do the opposite of a loving thing - anything can happen, nothing is safe. If someone assaulted you on the street, you would attempt to defend yourself or run away, but having a soul and what have you, you can't hit the person you love and there are myriad reasons why you don't want to run away, ranging from fear through to pity, with love and loyalty in between. There's also the sense that if the person who loves you the most, who you think is great and good and super, if this person can be driven to act in such a way and says it's because you're so useless and stupid and irritating, then you're pretty much the crappest thing there is. And that's how abuse works, whether there's violence involved or no. And there's nothing magic about being a man which makes you invulnerable to that.

And I say it's not about being injured, but even in the UK, where we're very unlikely to see an advert joking about this (I think and hope), a man is murdered by a partner or ex-partner once every three weeks. Being a big strong man can be advantageous in physical confrontation, but like they say in the gangster films, it's sometimes more about how far a person is prepared to go. If someone is prepared to assault you, especially if you're someone they claim to love, they are seriously scary. Most people aren't prepared to assault anybody outside hypotheticals.

The advert just made me feel sick. I don't get full blown panic attacks any more. I think it made me feel just as a sick as it would have done if it had been an injured woman. Women are more vulnerable to domestic violence, there are cultural and economic reasons for this and women are more likely to be seriously injured or killed. But that doesn't make it necessarily better to be a male victim. You're less likely to be killed (though you're more likely to commit suicide). You're also less likely to recognise what is happening to you as abuse, you're less likely to seek help and you run far greater social risks in doing so.

I was thinking about this and the way that women's violence towards men can be joked about in ways that male-to-female violence cannot, when a t-shirt reminded me that it's just different.

I'm so sorry but...This T-Shirt was available from the UK store Topman at the beginning of this week.

Image Description: A red t-shirt with black writing. It reads “I'm so sorry but...” above a list of excuses with empty tick-boxes beside them, as follows: “You provoked me, I was drunk, I was having a bad day, I hate you, I didn't mean it, I couldn't help it.”

There was a welcome fuss about this on Twitter and elsewhere on Wednesday and Topman quickly withdrew this and another t-shirt. Weirdly, the greater kerfuffle seemed to be about the other one, which was both odd and misogynistic in equal measure. It read, “Nice new Girlfriend. What breed is she?” It's like a cryptic crossword clue, the answer to which is Stay Away From This Man.

The t-shirt came to my notice on the same day of yet another report (contains a graphic image of facial injuries) about vulnerable teenagers being abused by their boyfriends and girlfriends, and about teenage girls in particular considering violence within their relationships to be normal. I imagine Topman were aiming at this kind of market – this vein of masculinity that says I'm an absolute arsehole and I don't mind who knows about it. Boys wear t-shirts that boast of their drunkenness and lechery, so why not hitting girls? It's a normal part of being a bloke. They tell the girls it's normal. They tell the girls it's normal with all the sentiments listed.

Both the advert and the t-shirt point to problems around masculinity – both are aimed at men, and fairly young men at that. One says it's funny if men get beaten up, the other says it's funny if men beat up women. We know that sexist humour cannot be divorced from sexist behaviour. And you know, in my experience, abusers tend to find their own behaviour fairly hilarious. Having your distress laughed at is part of the package of abuse. An abused man who sees the advert will already know that he should be subject to ridicule and an abusive man who sees that t-shirt will already know that his excuses are kind of funny. Both men have their ideas confirmed for them.


Incidentally, I realise I am likely to have erased domestic violence within same gender couples in this, but I don't think the attitudes I'm discussing are applied equally to same gender couples (domestic violence in same gender couples tends to be ignored altogether). Certainly, I've never seen or heard any humour about same gender domestic violence. And whilst I am certain that gender is used as a weapon against all victims of domestic violence, even by abusers of the same gender, I don't think the kind of thing I'm talking about is relevant to those scenarios. I don't know. Please tell me more.

Monday, September 12, 2011

The Disability Hierarchy 5: Wheel Life Drama

Blue Badge ParkingBy far the most popular international symbol for disability is a wheelchair user. Proper disabled people are wheelchair-users. When anyone wants to represent disabled people pictorially, anywhere from government leaflets to children's books, they will invariably opt to draw or photograph a wheelchair-user.

Of course, the position of wheelchair-users in our society is a weird one, because quite obviously, you can't hide a wheelchair. You can't pass as non-disabled and as such, you get differential treatment wherever you go. However, your mobility impairment is recognised immediately. Many, if not all, of your accommodation needs are obvious and considered automatically legitimate. So what you lose in social privilege by never being mistaken for non-disabled, you partially regain in going straight to the top of the disability hierarchy, a phenomena that Sue has described as The Leg-tatorship (which I mostly enjoy because of the implication about who runs a dictatorship).

A proper wheelchair user, in the popular mind, is a paraplegic or double above the knee amputee, who has such high upper-body strength that he can make the chair jump up a staircase if there is no ramp. Some wheelchair symbols even incorporate this active image (I have recently seen even more active symbols, as if the wheelchair is taking flight, but I can't find them today). Some of the discussion about such symbols can be unintentionally alienating to people who are dependent on batteries or other people to get around, and of course ignores the matter that most disabled people are not wheelchair-users.

The vast majority of wheelchair-users in films and on television are paraplegics or double-amputees who self propel their wheelchairs – certainly all the heroic ones are. In real life, very few of us have lost total mobility in our legs. Usually, it's just that we can't walk far enough to make it worthwhile, because of pain, fatigue, weakness, spasticity, poor co-ordination, stiffness or a combination of the above. In other words, there aren't many wheelchair-users who have straight-forward impairments which start and stop with the inability to walk (not that even paraplegia is quite so simple). Many of us don't use a wheelchair around our homes.

So there is a massive but entirely artificial division between walking and wheeling. I imagine most people who have become wheelchair-users through chronic illness will have experienced both their own and others anxieties about early wheelchair-use, as if it's a huge negative step. The narrative where someone struggles on, resisting further tokens of disability before finally succumbing to wheelchair-use (or asking for help, claiming benefits, whatever) is an appealing and popular narrative within the Tragedy Model of Disability, but it is also genuinely tragic that a helpful piece of equipment carries such enormous psychological weight.

In the same way, many of us have experienced the vast difference in social attitudes and accommodation between walking with mobility impairments and wheeling. Like I say, you become very definitely disabled, that brings a load of nonsense with it and there is less room for compromise around physical access. But as a younger ambulant woman, strangers would sometimes consider it okay to challenge my need to stop, sit down, take a taxi, use a disabled loo because they couldn't see any impairment (although principally, because they were rude people). On the subject of disabled parking, non-disabled people and even some full-time wheelchair-users often seem to have the idea that if you can walk at all, you have no mobility impairment. In reality, painful walking requires far more time, planning and a greater reliance on disabled facilities in order to get around. In the wheelchair, I'm sat down, so it doesn't really matter if I have to take the long way round.

Margo has written about how others have regarded her ability to shuffle about inside the house as a sign that her condition is relatively mild compared to full-time wheelchair-users, despite the many severe functional impairments she has. I fully concur. My physical impairments get in the way of many things, but the pain that causes them is infinitely more difficult to manage. And much worse still is the cognitive impairment which stops me working, being able to drive, being able to socialise, being able to look after myself and being able to do very much outside the house without help. I would ask my fairy godmother for improvements in many different aspects of my health before we got onto making me walk better and further.

However, there is an increasing attitude that this is the twenty-first century, the world is now fully accessible (did you notice? I must have slept through it!) and being a wheelchair-user is not a big deal. The new Personal Independence Payment which is going to replace Disability Living Allowance is based on this premise; if you can self-propel a wheelchair, then your mobility impairment incurs no more cost than if you were fully ambulant. Lisa has written about what a disaster that will be, and Sassy Activist has written about the massive unseen cost of being a wheelchair user.

And naturally, there is a hierarchy of wheels! I'd like to have written a hierarchy of all mobility aids, but I'm not confident of the difference in social attitudes towards crutches, walking frames and so on. I know there are differences – for example, I know people who use crutches all the time are often asked what they have done to themselves, because crutches are seen as temporary. I know that walking frames are associated with old age and all the stigma that entails. I perceive that it is far more acceptable, even now, for men to have walking sticks or canes, presumably because of their history as a masculine fashion accessory.

And so to

The Hierarchy of Wheels

Assistant wheelchair – bottom rung of the wheelie ladder. When I am pushed in a manual wheelchair, far fewer people interact with me. It is as if your (assumed or actual) inability to self-propel suggests an inability to communicate. Sometimes, I do struggle to communicate, but that doesn't mean I'm not present. Of course, with an assistant wheelchair, people are provided with a convenient ambulant person who is always with you and who they can address over your head.

So there are times when being in an assistant wheelchair is much like being a ghost. Many people don't merely ignore you, but behave as if they can't see you, as if they don't want to see you. A smaller group of people simply stare, but don't interact with you – never smile back if you smile at them. I really don't know what I'd be without those sensitive perceptive people who feel that ghosts are people too.

Assistant-wheelchairs are extremely rare in film and on television, except to depict total incapacity – e.g. McMurphy arrives back on the ward in One Flew Over The Cuckoo's Nest in an assistant wheelchair having been lobotomised. Mr Pots from It's a Wonderful Life has an assistant wheelchair, but I think that's merely historic – if that film was remade today (God forbid!) he would definitely be a powerchair-user.

Scooter – For some reason, when I think of all the stories of disability street harassment from friends and acquaintances, scooter-users are over-represented. I've not used scooters a lot, but as a young not-fat woman, I think I'm in an advantageous position when I do. Mind you, in 2005, Ms Wheelchair of America was stripped of her crown because she used a scooter more often than a wheelchair. This lead to a lot of odd on-line discussion about wheelchairs, scooters, the ability to walk a few steps and one's qualification as disabled.

Scooters do seem to have a emasculating image which I don't understand. For one thing, it's often the only way you can off-road if you have bad legs. Little boys are often fascinated by mobility scooters – especially if they are being ridden by a grown up man. And perhaps more than any other disability tech, scooters have the potential for superhero conversions [links to The Sun]. Yet as a young man, Stephen has experienced so much street harassment as a scooter-user that it's become a routine experience.

Meanwhile, very overweight scooter-users are massively stigmatised with the idea that fatness vaccinates against all non-weight-related conditions (as mentioned here) and fat people must be using scooters out of laziness - something Renee has written about. (Personally, I don't know why people would be upset even if people did use scooters out of laziness – who exactly loses out by that?)

Older scooter-users on the other hand are considered a menace because old people are hilariously doddery and did you hear about the old biddy who ran her scooter into the canal? Ha ha ha! Older disabled people are going to get their own post in this series but suffice to say that older people themselves and anything associated with them – conditions, equipment and so on – sits very low on the disability hierarchy.

Scooter-users are immensely rare in films and on television. In fact, apart from the occasional mad-granny-on-a-scooter used for comic purposes, I can't think of a single example. Anyone?

Electric wheelchair / powerchair – things get a lot better. My most positive experiences of going out and belonging in the wider world on wheels have been with my electric wheelchair. A much higher proportion of strangers are able to look you in the eye and address you directly. Stephen Hawkins is a powerchair user and is perhaps the most famous disabled person on Earth.

Although powerchairs are relatively rare in film and fiction, wheelchair-using villains almost always use electric wheelchairs; Davros, John Lumic (who invents the Cybermen in a parallel universe), Rygel from Fascape, The Man with The Plan from Things to do in Denver when you're dead, Dr Loveless from The Wild Wild West eventually even Blofeld. It seems there's something sinister about moving about by the use of a joystick – like I say, if Mr Pots was around now, that miserly dude would be packing batteries. If it wasn't for Professor X and Odell Watkins in The Wire none of us would ever be trusted. Oh yeah, and Dominique Pinon's character in Alien 4, but I think he may be as ashamed of that role as I am to have seen the movie*.

Self-propelled wheelchair – top of the props! People who self-propel their wheelchairs can be entirely fit and healthy and sometimes very muscular and sporty. Some self-propelling wheelchair-users are so physically fit, sporty, successful and wealthy, they can happily call for the abolition of the word disability, because you know, it's such a negative word and they don't want to be thrown in with the rest of us who aren't nearly so brilliant (sorry, it's still fresh).

But as I've said, there is the increasing perception that anything is possible, workplaces, homes, transport and so on are now completely accessible, right? And whilst other disabled people may be looked at and presumed to be non-disabled, self-propelling wheelchair-users are increasingly looked at and presumed to have no more impairments than the one that can be seen. Not to be in pain, not to have difficulties caring for themselves or getting around. Our culture struggles with the idea of multiple impairments and possibly struggles even more when one impairment is very obvious and others are not.

However, self-propelling wheelchair-users have no shortage of positive famous role-models, in politics, sports and entertainment as well as no end of positive characters (if rarely central protagonists) in films and television drama; Ironside, Ron Kovic in Born on the Fourth of July, Dan Taylor in Forest Gump, Kenny in The Book Group, Adam Best in EastEnders, Josh Taylor in Neighbours, Joe Swanson in Family Guy and the highly controversial Artie in Glee.

And oh look, they're all men! And would be all white, except I've just remembered Stevie from Malcolm in the Middle. And then just as I was about to give up, Stephen pointed out that character played by the lovely Gina McKee in Notting Hill was a self-propelling wheelchair-user. Oh and I've just remembered Eileen Hayward in Twin Peaks. Well, that's all right then.

I hope you appreciate that when I list disabled characters from films, I'm sure there are others, probably far more obvious ones who have escaped my mind. So feel free to join in with my compulsive listing. One of these days I may create a blog post listing all disabled characters in films and television, as nobody seems to have tried to write a complete list yet.

* In fact, for all its faults, Alien 4 (or properly Alien: Resurrection) handles disability very well. The character is complete, both flawed and likeable in his own right and he just happens to use a (very cool) powerchair. The impairment is used but only as fairly minor plot points (e.g. he can't feel the Alien's acid blood when it falls on his leg, he uses the chair to smuggle contraband etc.) and never for the soaring pathos you can usually expect when you encounter a wheelchair-user in an action movie.

Thursday, September 01, 2011

The Disability Hierarchy 4: Diagnosis Matters

My cousin had a friend who was entering into his second heterosexual marriage. His first wife had died suddenly when they were both very young, and after her death he'd had an relationship with a man, in which he was physically and psychologically abused. The friend described himself as straight and said he had been taken sexual advantage of by his abuser at a point when he was deeply vulnerable. However, this chap's sexuality was a subject of immense speculation – and no small amount of amusement – between my cousin and her husband, other friends and enough of my own family for the story to get back to me. The general feeling was that this chap must be gay but pretending otherwise and his new marriage must be a sham. All manner of personal information and conjecture was sifted through, including a detailed discussion on what little interest this guy appeared to take in women's breasts.

A number of times in my life I have been privy to conversations among other white people where folk attempt to determine another person's ethnicity. It is a source of frustration and confusion when a person cannot be neatly categorised, as if, should it be impossible to generalise whereabouts a person's ancestors came from (let alone if someone has ancestors from more than one place!), it would be impossible to know how to treat them.

Marginalised people are at the mercy of privileged people in this way. People are allowed not to be straight, white, cis, non-disabled etc. but nobody is going to tolerate you unless they know which sort of substandard person they are so generously tolerating.

As disabled people, we are constantly expected to account for our status, by discussing our diagnosis, describing our medical histories and so on, even with strangers. Then we are compared to other people with the same diagnosis to make sure we fit into the popular perception of what a person with X condition is supposed to be like.

And thus one of the fundamental rules of the disability hierarchy is have a diagnosis. A few years ago, Wheelchair Dancer mentioned her diagnostic limbo – she has no overarching medical label which describes her impairments – and was responded to by rejection from other disabled people, who accused her of being a fraud (you know, that common scam of becoming a wheelchair-user just so you can dance as one). There are no medical mysteries! Either a doctor can tell you exactly what is wrong and why or else you're simply making it up.

But of course, there are plenty of medical mysteries, there is plenty of variation in the way conditions manifest and as such, lots of disabled people have long periods without a diagnosis. Other people have multiple diagnoses. Others have diagnoses which change over time. Others simply have rubbish diagnoses. For example, people who have agonising back pain which permanently impairs walking, sitting, standing etc. often lack diagnostic labels which differentiate between them and people who have temporary back problems that can be got over with rest and pacing. Chronic Fatigue Syndrome is an enormous umbrella under which which you have everything from persistent but manageable tiredness through to total paralysis and death. Mental illness criteria tend to be more specific but then our culture takes them and folk call themselves OCD for being overly tidy, or Bipolar when their mood changes suddenly.

In ten years time, there will be new labels for things people have now, and other labels will go away. Perhaps more than any other science, the terms used in medicine are constantly in flux as our bodies and pathologies are understood differently. Medical labels are utterly irrelevant to functional impairment. But they are even less relevant to who we are.

The second rule about diagnosis in the disability hierarchy is don't get a mental health diagnosis. It's a very common experience among people with chronic physical illness – especially but not exclusively women – to have our problems initially dismissed as “all in the mind” or dismissed with an actual mental health label. The problem here is the word dismissed. Because it doesn't matter how dramatic an illness is manifesting itself, the mere suggestion that it could be psychological means that it doesn't count. It is of your own making. It might as well be something that you chose to experience.

Misdiagnosis needn't be a massively traumatic experience. Let's take an imaginary person called Bonny who has Lupus. If she was misdiagnosed with MS for a while, then as long as they figured out the mistake before it became dangerous, then that really wouldn't be a problem. Conditions manifest themselves atypically. Details are missed. Accidents happen. Once I was told I had an inflamed hernia and it turned out to be constipation. I was relieved (eventually - ha ha ha! Sorry). If it had been the other way round I would have been anxious but not offended.

But say Bonny is misdiagnosed with depression. This ought not to be any kind of problem. A doctor taking all the information into account and proposing depression as a diagnosis ought not to be insulting. But the way Bonny is treated will be. This treatment may sometimes start with the doctors themselves, but if not family, friends, colleagues and employers will certainly oblige...
  • If she raises the matter of symptoms that don't fit, then she is either imagining or lying about those symptoms.
  • If she raises the fact she doesn't think she is depressed, then she is in denial or lying. She has no self-awareness.
  • If her health doesn't improve, then she is resisting treatment, she is misbehaving and failing to pull herself together.
  • If her health deteriorates dramatically, then she is seeking attention, or letting self-pity overcome her, or maybe it's because the weather is so bad this week.
  • If she has a good day or a remission, then it will be believed to be because she is working out her problems, coming out of herself, or maybe it's because the sun is shining, etc..
Whatever happens to Bonny, if she is believed to have depression, her character is defamed by the course of her health. For this reason, many people with chronic physical illness who have had these experiences make a very big noise about their rock solid sanity – to the extent it becomes quite hard for them to ask for help if they do develop mental health problems (which has a greater than one in four chance of happening at some point). They can also occasionally make statements along the lines of, “They thought I was a raving mental, but then I had a blood-test which proved that I was ill all along!”. For other people with these experiences, the habit of constantly questioning their own perception of their physical and mental health never goes away. An inability to trust yourself makes it difficult to manage any kind of health problem.

So, if that's what it is like for someone with a physical illness, how is it going to be for someone who does have chronic mental ill health? Their character is defamed all the same. Mental illness sometimes involves lapses in self-awareness and judgement, but it doesn't make a person chronically clueless as to how they are or what is happening to them. It doesn't render relapse and remission a matter of behaviour, willpower or the weather. And it doesn't change the nature of impairment dramatically. If depression or anxiety causes physical pain, that pain isn't going to be less dramatic than pain with a physical origin. On the contrary - it's likely to be harder to relax and play tricks on your mind to cope with it. If depression makes it impossible to motivate yourself to get out of bed, then you can no more get out of bed than if your limbs didn't work. Yes, the medical treatments for physical and mental conditions are very different, but our functional impairments are exactly the same.

This is the case even with hypochondria. A [cis male] friend of mine has hypochondria to such a degree that he once had to ask his GP for reassurance that he couldn't have cervical cancer, (to which the GP replied, “If you do, we're both going to be famous!”). But I have seen him when his mind has given him physical symptoms and it is a great cause of suffering and genuine impairment - even when he knows it's psychosomatic, he can't will the problem away. Instead he takes the necessary steps to recover in the same way that I respond to a crisis in my physical health. Some people don't know they have hypochondria, but convincing them that they do will not magic away the problem (and attempting to will probably increase their distress and with it their discomfort, and of course you could be wrong anyway).

One great irony is that the degree of doubt and mistrust towards people with mental health labels is exactly why some people do go into denial or lie about the nature of their illness.

Which brings me onto faking and attention-seeking. It seems to be received wisdom that some people will fake impairments for social gain - that some people will do it for financial gain seems obvious, because if there is a scam to be had, someone will have a go. Being disabled is a social disadvantage, but many non-disabled people seem to think that the special treatment we receive is some kind of privilege and as such cast doubt on people whose impairments they don't understand. Much like my cousin and her friend's sexuality.

Ironically, it is people with lower status diagnoses, including mental health diagnoses who seem most vulnerable to the accusation. And yet, quite obviously, those people who are so desperate for attention and sympathy to feign impairment will invariably pipe for very high status diagnoses. I've known of more than one person who falsely claimed to have cancer in order to intensify a new relationship. The faux-paraplegic is not such an unrealistic staple of fiction, from Little Dorrit onwards, because paraplegics have a very high status, miminising the negative social consequences of disability (please don't think I mean it doesn't suck).

Although people with Body Identity Integrity Disorder may not be motivated by attention and sympathy (and they are disabled), they also desire much higher status impairments than the ones they have - usually amputation or paraplegia.

And yet, the lower you get down the disability hierarchy, the more doubt is cast over you being disabled at all. This applies to non-paralytic back injury, many chronic illnesses, especially mental illness, but also dyslexia, ADHD and other "learning impairments". This all comes back round to the Charity Model of Disability. There is no consideration about the logic of faking impairment in these ways. Instead, like some great stingy societal insurance firm, non-disabled people don't want to award the magnanimity of their tolerance to anyone if they can afford not to.

Friday, August 26, 2011

The Disability Hierarchy 3: Only Yourself To Blame

Seldom went such grotesqueness with such woe;
I never saw a brute I hated so;
He must be wicked to deserve such pain.
- Robert Browning, Childe Roland to the Dark Tower Came

Healthy-living is not a moral duty and if it were, everyone's a sinner. However, in order to be an acceptable disabled person, you must be seen as having done everything within your power to be healthy. You can't be merely an innocent victim of misfortune, you must be immaculate.

It is shocking how deep this goes and how hard some people will try to absolve themselves of responsibility. Some people reach for bastardised religious and New Age ideas around karma, sin and laws of attraction which state that disabled people either did something to deserve it or else subconsciously wished it upon themselves. Many more healthy non-disabled people believe that they are personally responsible for being in good health and therefore people who are not simply can't have tried hard enough.

I guess this performs a few psychological functions. One is to make non-disabled people feel safer about their status – in the same way that believing that money is fairly distributed makes wealthy people feel safe. The second is to make non-disabled people feel superior. And as such, even some disabled people indulge in this behaviour.

The way this effects treatment of disabled people who are considered responsible for their impairments is absolutely horrendous. It is sensible that ongoing behavioural problems should be taken into account when it comes to certain medical treatment, but the Minister for Disabled People's repeated statements about alcoholism and Disability Living Allowance strongly imply that someone with severe impairments is simply not disabled if they have addiction.

This sort of thing is massively inconsistent. Someone who becomes paraplegic in a sky-diving accident rates higher than someone who contracts emphysema after a lifetime of smoking, who in turn rates higher that someone who contracts HIV from unprotected sex, even though all three were engaging in morally-neutral risk-taking activity. How someone got sick has no bearing on their experience of functional impairment or disability, and yet I once saw folk on a disability messageboard reject a newbie who had HIV on the grounds of “you can't be disabled if it's your fault.” *

Regardless of your impairment, being significantly overweight brings you right down in the hierarchy, despite the fact that obesity is a very common and an obvious effect of restricted mobility, let alone metabolic disorders and the side-effects of many medications. If you're fat, people - sometimes strangers - will openly speculate that if only you lost weight, your physical health would improve, your brain chemistry would adjust, your genes would rearrange themselves, your limbs would grow back etc.. Whilst our culture regards fat folks as universally unhealthy, it also regards them as magically immune to all medical conditions which are not related to being fat. Since fatness is considered a result of greediness and laziness, if a fat person has an impairment, it has got to be his or her fault. Find any discussion about disabled parking on a news website and there will be complaints about the people having disabled permits just because they're fat. In many minds, fat people and disabled people are two mutually exclusive groups.

And of course when it comes to genuine over-eating, whilst under-eating to the point of physical complications is considered a serious mental illness, over-eating to the point of immobility or even death is considered uncomplicated greediness and a bit of a joke.

I need to write about mental illness in another post, but one of the major issues with the low status of people with mental illness among disabled people is the idea that mental illness is at least partly self-inflicted and therefore those impairments don't count. The status of people with Bipolar Disorder has shot up in recent years, partly due to having an adorable sane-seeming wit for a poster-child, but partly due the increasing public understanding that bipolar appears to have a genetic origin. If it's straightforward genes, then that's not your fault. Some people with depression, anxiety and stress are also massively disadvantaged by genes, but that's less easy to determine. The fact that most other factors contributing to mental health are entirely out of a person's control – brain-architecture, hormonal balances and events, and most of all very bad things that happened to you - is utterly lost. And then there's the fact that someone with chronic depression has failed to pull themselves together after they became ill.

Because even if you are slim and have a bad luck impairment, you will never escape this issue of responsibility. If they're not running marathons up mountains with dolphins, real disabled people featured on television are usually in the process of trying to get better, trying some new pioneering treatment or technology, full of hope for a non-disabled future. They are an inspiration to non-disabled people. A fairly recent flipside to this is that disabled people who are seeking death by euthanasia are almost seen in the same light – they are, after all, aiming for a place where they're not disabled any more. They too are considered brave (including the bravest man Terry Pratchett ever met). In an article about the suicide of John Hinkleman, a friend of the artist summed this up nicely;
“The bravery for him to get up and go through that door was staggering. [...] He beat MS. It takes away the control of your life but this gave him control.”
(The comments thread (together with those on all articles everywhere about these cases) mostly concurs, but funnily enough there is a debate about whether people who jump off Beachy Head are also brave, which of course they aren't because they are mentally ill. And not being real disabled people, people with chronic mental illness are denied the possibility of a noble exit.)

Christopher Reeve was a truly excellent cripple because, as well as being an injured superhero, he first felt suicidal but then declared that he would walk again, despite that being not merely against the odds, but absolutely impossible at that time or at any time in the forseeable future**.

As a person with chronic illness, I fall down the hierarchy simply for getting on and enjoying life, and neither wishing to kill myself nor spending every ounce of energy on pursuing a cure which may or may not exist. I have been called a pessimist for not being engaged in expensive, entirely unproven and in some cases, effectively disproven alternative treatments. An acceptable disabled person never stops trying not to be disabled. This is perhaps especially the case with chronic illness, because cultural ideas around the Sick Role.

Even if not engaged in some kind of a therapy, an acceptable disabled person must be seen to be doing the right thing all the time. If I am seen to over-do things, fail to eat properly, take my meds, manage my sleep, or if I am seen not to be doing as much as I could be, perhaps taking too much care of myself, then I become a less acceptable disabled person. And naturally, anybody who feels that they have the right to judge, is likely to find fault in how I behave. If only I lived my life exactly as someone else imagines they would live my life, then my health might be a lot better. Hmm.

Disabled people's lives belong to them. And until we've established a nightmare dystopia where everything everyone does, consumes, inhales or fumbles about in the dark with is tightly controlled for their own benefit, disabled people have the same rights and no more, both to healthy-living and self-destruction as everyone else.

* To make this situation even more horrible, it turned out that this person had contracted HIV following a sexual assault. Even in the West, there are plenty of people with HIV who didn't knowingly take any risks at all. But even those who did do not deserve to have a terminal illness, let alone the treatment that goes with it.

** It's worth saying that I believe Reeve himself was more sensible – and thus less inspirational – than it was often reported. For a while he was unpopular with disabled activists because of the emphasis he seemed to place on finding a cure for spinal cord injury. From everything I've read, I think that this has more to do with spin than the man himself.