Diary of a Goldfish

Mad, Bad & Dangerous to Say

2012-01-26T10:57:00.000Z

For the most part, itis very easy to avoid disability-related slurs in British English. Nobody ever needs to say spaz, cripple, retard, mong etc.. People areclumsier with other language such as wheelchair-bound (outside an S & M context) or saying able-bodied when they mean non-disabled, but there are few excuses for the wordsthat really sting.

In American English,things get a little trickier when you want discuss the common andunrelated matter of stupidity. Psychologists ruined several serviceable words for foolishness bycategorising people with intellectual impairments (including categories of people to be forcibly sterilised) as dull, moron, idiot, even stupid itself*. The FWD (feminists with disabilities) blog did a number of Ableist Word Profiles which discussed some of this language.

In BritishEnglish, foolishness or stupidity is all about behaviour and to myeducated by not infallible knowledge, stupid people have always donestupid things, regardless of their IQ. When it came to not lookingafter people with intellectual impairment, we used imbecile a fairamount, but otherwise stuck to pleasant euphemisms such asfeebled-minded, half-witted, backward and as one friend was cast inhis youth, educationally subnormal. Special needs, basically.

There is, however, a problem with the language of mental health and the language of - Istruggle to come up with a neutral term for the thing - outlandishirrational behaviour? For now, let's pencil in craziness. I feel thisshouldn't be any problem for me - I have plenty of experience of mental ill health, I studied psychology and am acutely aware of the waydiagnostic labels take on a cultural meaning which may have littlebearing on what it's like to live with any given condition. As adisability activist, I'm also aware that people with mental illnessare among the most vulnerable disabled people, not least becausethey're often left outside discussions of disability. I feel I should be able to talk about the world without any fear of using problematic language, but I'm not sure I can.

Yet this other thing issomething we do have to describe. It's usually in the negative,although my choise of craziness is frequently usedto describe positive exuberance or else a kind ofhiggledy-pigglediness; crazy in love, football-crazy, crazy paving,crazy quilting, crazy golf, crazy discounts in our mid-winter sale,“Oh we're never going to survive unless we go a little crazy”,etc.. People describe themselves as crazy when they mean quirky,fun-loving, impulsive and a bit annoying (well, maybe they don't mean annoying, but people who describe themselvesas crazy often are). There are companies with crazy in the title,which just isn't the case for most slurs around mental illness –you could have a shop called the Crazy Pet Store, but the Psycho PetStore? Not so much. Although I'd totally shop for a hamster there!

Usually when we reachfor words to describe craziness, we're wanting todescribe something which is not only bad but baffling in itswrongness, an extreme behaviour which defies all logic, common senseand decency. As well as a strong cultural tendency to explainheinous crimes in terms of mental illness, to tidy away messy andmonstrous behaviour with neat labels and expert speculation, we reachfor words which condemn in tone as well as vaguely-pathologicaldefinition; psychopath, psycho, sociopath, unhinged, deranged, maniac, mental etc..Words which reference mental illness but get mixed in with evil,monster, freak. When we mix up the words, we mix up the ideas andleave people with mental ill health extremely vulnerable to fear andhate.

The opposite ofcraziness is also something we need to describe. When I talk about myexperience of Post Traumatic Stress Disorder, I have to phrase it interms of the jolt I received when I became sane. This sanity does notequate to mental health – clearly not, given that it co-incidedwith a psychological disorder – but only after I escaped and began to value myself, did thefull horror of my violent marriage catch up with me. Even while I felt very sorry for my ex, my brain began to respond to thoughts of him, letalone contact with him, with abject terror, flashbacks and panicattacks. And although those things were disproportionate – I wasperfectly safe by then, after all – it is completely sane to beterrified of someone who has frequently assaulted you and felt justified in their actions.

Althoughlegally, sanity and insanity have specific definitions which refer toone's state of mind, none of these relate directly to mental health. For example, most people with even severe mental illnesses can vote,sign legal documents, and indeed, be held culpable for any criminalacts they commit – even if they have had their freedom taken awayfor safety reasons (psychiatric patients can be denied all theserights and responsibilities, but it's not a default thing). It's veryrare indeed that people with chronic mental ill health slip over tobeing insane. Insanity is about losing touch of the fundamentals,particularly right and wrong.

There arelots of criminal acts which suggest insanity but, like the vast majority ofcrimes, are committed by people who have no diagnosable mental healthcondition. So for example, there's a very great deal of debate aboutthe sanity of the Norwegian mass-murderer whose name I refuse toremember. The question of whether he was sane when he murderedseventy-seven people seems separate from the question of whether hehad a mental illness.

Yet as I seeit – and I'd really love to be corrected on this – the common usage of ourlanguage doesn't truly differentiate. Crazy is still a word which hasgreat significance for many people with mental ill health, who havebeen dismissed, feared and attacked as crazy. As well as theimpulsive fun-loving “crazy”, some people with mental illness identify themselves as crazy, as others identify themselves as mad. Sanity is stilltalked about very much in relation to mental health.

So where arethe words we can use which don'tmuddle the medical with the non-medical?

(By the way, I don't mean to suggest that disabled people only have to worry about disability-related slurs. I don't think any of us think of a fool meaning someone with intellectual impairments, but recently this word was shaved onto the back of an unsuspecting man's head. I strongly dislike the word stupid because for years it was used to berate me for my poor co-ordination and cognitive dysfunction. Stupidity is a thing, but I do hate to hear anybody called it. Disabled people are called plenty of nasty names which have nothing to do with us.)

* Happily, the pain-stakingly categorical language of the mostly American psychologists and eugenicists did lead to Aldous Huxley coming up with classes ofsupposedly inferior people such as the “Epsilon Minus Semi-Moron”in Brave New World, which does roll off the tonguerather nicely when dealing with unco-operative broadband providers.Not really – as I recall, the Epsilon Minus Semi-Morons were verygood at their jobs! No, really, of course, I don't call people names. Much.

Let The Right One In / Let Me In

2012-01-18T20:10:00.001Z

Let the Right One In (2008) wasthe best horror movie of the last decade. It manages depthsof character and visual beauty that few films rival, let alone filmswithin a genre dominated by archetypes and little morethan padding between the shocks and thrills. You know sometimes youconnect with a film on a romantic level? Well, I did. It comes veryclose to perfect. Stephen reviewed the film as an adaptation of the original book lastyear.

You can guess how Ifelt about the news that they were making an American version. But it was being directed by Matt Reeves, who made the excellentCloverfield, and the buzz about the remake was that it wasn't quite as awful as it could be. So we had to take a look.

I didn't decide towrite a review in which I slate one film for being a pale imitationof another. I decided to write a review because in many ways,everything that's wrong with the American remake Let Me In (2010) demonstrates what is so right about Let The Right One In.

Both films are about atwelve year old boy, who meets a new neighbour of the same age, whoturns out to be a vampire and helps him stand up to his bullies. Between them, these two filmsshowcase four excellent child actors, who all did brilliantly withwhat they had to work with. None of those kids can be faulted. Some other things can be.

Let The Right One In isa brilliant study in how to paint character with very fewbrush-strokes. We understand the protagonist Oscar, we understand hisrelationship with his parents – including his love for them and hisprofound sense of betrayal by them, without more than a few glimpses intohis back story. We understand his helplessness against his bullies andthe raw impotent rage this draws from him. We know something of Eli'srelationship with the man who goes out to murder for her, althoughthere is ambiguity here. We know that he adores her and is not a naturalkiller - he's a bumbler. The American version was far moreefficient, creepy and altogether less likely.

There are very fewfilms that really invoke how it is to be a pubescent child (or at least, the kind of child I was). The intrigues and frustrations of that age, where your own fantasies have taken the place of second-hand make-believe and the world grows a littledarker and richer for it. At twelve years old, we knew what we havelargely forgotten since; There are dangerous people in the world andsome of them are children.

In Let The Right OneIn, the bullies are sadists, monstrous: ordinary kids. It doesn'tmatter to us or Oscar what made them that way – unlike his Americancounterpart, Oscar never needs to ask if there is evil in the world because he encounters it every day. In Let Me In, thebullies talk too much. Their greater size and strength, together withtheir preoccupation with masculinity – constantly taunting thattheir victim is a little girl - make them patheticrather than menacing. As a viewer, I'm well aware that I am grown upand could shrink them down to size with a few cutting words. I'd also asktheir victim what was so wrong with being a little girl?

But then, apparently,femininity sucks in 1983 America. The boy's father informs him thathis mother is sick and has funny ideas aboutthings. We see no evidence of this so I'm not sure if we're supposedto believe it – we never see the boy's mother's face, and we're notgiven any clue as to how he feels about her either way, just that he can't turn to her in his struggle against the bullies. We knowshe's religious – perhaps from that we're supposed to assume thatshe's an intolerable harridan? Elsewhere, we're treated to the horror movie convention that if you've seen a woman's breast, she's thereafter fated to die a horrible death without getting a single line of dialogue.

All ambiguity aroundgender and sexuality has been painstakingly removed by the Americanfilm-makers. Yes, this is a hobby-horse of mine, but it matters! It's hard to tell ninety minute stories which reflect the full rangeof gender and sexual variation, but with ambiguity, you feel like youmight be being represented in there somewhere.

Twelve year oldsexuality is almost always ambiguous. You're twelve! Your own bodybecomes mysterious to you, let alone other people and their bodies.In Hollywood, this isn't allowed to be the case. On the one hand, they weren'tcomfortable, as the Swedes were, for the camera to linger on ahalf-naked twelve year old, because you know, that would beweird – you can only show naked people that theviewer is allowed to lust after! But then, moments after we've firstmet the boy, we see him using his telescope to spy on his neighbours' making love. So we can see the naked breast of Sexy-Bound-To-Die-Now-Lady. So we can see the boy isnormal, because he infringes upon the privacy of people with breasts.

Whereas when, in LetThe Right One In, the beautiful androgynous Eli asked Oscar if he'dstill like her if she wasn't a girl, we sense the question has two meanings: What if Eli was not human? What if Eli had a different gender?

Later, we see afleeting glimpse of a genital scar on Eli. The American vampire isunambiguously feminine. She's blonde, conventionally pretty and romantic and never evenbedraggled. When she attacks someone, her face changes shape, in true Buffy tradition, because you can't have prettygirls do monstrous things whilst still looking like a pretty girl.

Finally, Let The Right One In issuch a beautiful film. You can smell the fresh snow and taste thecold night air, feel all the textures as well as the warm breath andcold touch of the characters. The Scandavians know how to film snow. Snow and Fairisle jumpers. There are long periods and big wide shots of stillness orrelative stillness, but never any drag. Although there is blood, gore and pretty awful (as in both severe and ropey) burnsinjuries, these moments are chosen and handled carefully. The climax of the filmis horrific, shocking and wonderful and involves bright lights and very little bloodindeed.

The Americans decidedto represent the early 80s by making the wholeworld a little bit dingy. Despite the snow, there was more a sense ofdamp than the dry cold of the Swedish film. They did some thingsvery well – in particular, there was a new scene with a fabuloustracking shot, with a camera mounted inside a car as it crashes androlls down a hill. They did however enter the running for my newfilm award category "Most superfluous use of CGI in a scene thatmight have been scary otherwise" when they decided that a smallchild clinging to a grown man as she sucks the blood out of histhroat just isn't scary enough. And although there was much similarityto the original film's climax, they reduced the light, added gore and(literally) threw in a severed head.

I can't discourage anyone (except those who just don't like scary films at all) from watching either movie. The trouble is that of its genre, Let Me In isn't a bad film by any stretch of the imagination. It's just that it's an Americanised, simplified and straightened-out version of an absolute masterpiece.

The Welfare Reform Bill: What's wrong with time-limiting contributory ESA?

2012-01-10T10:02:00.001Z

Another summarising primer on these issues for people who aren't necessarily aware of what's going on with UK disability benefits. If you know all about this already, click here for what we need to do about it today.

There are a few reasons why ESA has not become a national scandal, and one of those is that it sounds complicated. But it is vitally important, if you live in the UK it effects you and I am to try to keep this simple, so please bear with me.

Employment Support Allowance is replacing all the old incapacity benefits. It is awarded to people who are considered unable to work due to illness, injury or disability. There are various different levels of benefit, depending on one's level of impairment and National Insurance contributions.

The most serious issue about ESA in the Welfare Reform bill is that for most people on the benefit, there will be a time-limit of one year. These are people who

(a) are considered unable to work but not considered incapable of work-related activity (people in the "Work Group"). Most people on ESA fall into this category, and it includes people with all manner of severe, chronic and even life-threatening conditions.

(b) have paid enough National Insurance to be put on the "Contributory" rate. So all of these people have either worked and paid taxes for many years or else became disabled at a very young age. Most people who become incapacitated for work do so in middle-age, so most people on ESA, as with the old Incapacity Benefit, had worked for most of their lives up until that point.

After a year, all a person's benefit will be means-tested. This means, if they have a working partner or any savings, then they will not have any income of their own. Those disabled people affected by this change were informed last April, before any parliamentary votes on the matter, that they would lose their benefit after one year. This is going to start effecting people's lives in three months time.

There are four very serious problems with this proposal

1. Hardship

Wealthier people, whose partners have well-paid jobs are unlikely to experience real hardship. Single people without savings will not become much poorer. However, the Disability Alliance calculates that on average, a person on this benefit will lose £50 per week. Many people will lose closer to £100.

A partner's income begins to effect benefits at £7500 a year - that's about a twenty-four hour working week at minimum wage. That's still a rather poor household, who cannot afford to lose a penny.

Benefits for people out of work due to ill health have always been higher than unemployment benefit because

(a) Disabled people have very limited opportunities to improve their situation, which is likely to be longer-term or lifelong - the government's own statistic is that 94% of the ESA "Work" group will not be in work by the end of their first year.
(b) Disabled life is more expensive. We have fewer opportunities to live frugally, such as turning down the thermostat, washing ourselves, our clothes and bed linen less often, cooking from scratch, selling the car etc.. Meanwhile, partner's of disabled people often can't afford to take on extra hours or a second job, even if they are not an official "carer".

Often, people dismiss arguments about hardship on the grounds that poor people get “their rent paid” and all sorts of other goodies. First off, if you don't qualify for a means-tested benefit, you don't automatically qualify for Local Housing Allowance, Council Tax Benefit, Free Prescriptions and so on. Not all poor people rent - they may have a nearly-paid mortgage at the point the main breadwinner gets sick. And these days, social housing is extremely hard come by and Local Housing Allowance isn't stretching to cover many private rents, especially not accessible accommodation. When the cuts kick in, there will be a shortfall of £150 a month between the cheapest place I could physically live in my area and the amount of Local Housing Allowance I would be eligible for.

2. Hopelessness

Becoming incapacitated for work involves many losses and a loss of income, together with a more frugal lifestyle is inevitable. Nobody asks that those unable to work should be paid anything like what a person could earn in work.

However, some disabled people have savings or money they've inherited. People affected by the time-limit will face the prospect of having to live off this money, which either they or someone else had worked hard for, resisting all the temptations they might have spent it on.

There has always been some irony in the disincentives to save money for people who might end up on means-tested benefits, but for disabled people, who crucially, have no other means of improving their situation, this seems particularly unfair. Especially, when the three most common scenarios for a disabled person with savings would be either

(a) They worked very hard for many years and lived very frugally until they became disabled or
(b) Because of their care needs, they were unable to move out their parents' home, so had low living expenses and chose not to squander their low incomes or
(c) Someone else, feeling that the disabled person's future looked bleak, gave or left them a lump sum towards their future security and independence.

3. Pressure on Sick People.

There's no condition in the world, physical, sensory, mental or intellectual, which might benefit from a ticking clock. In fact, I believe the presence of a time limit could be deadly dangerous in two ways:

(a) An increased risk of suicide. When my physical health has been so bad that I have felt like giving up, I have often found deadlines useful. I have thought, “If it is still like this next month, I will kill myself and it'll all be over and done with.” I have experienced depression at times, but usually such deals have been made on the grounds of being thoroughly fed up. Friends with chronic mental illness have talked about doing the same thing in order to put off that terminal decision, whilst leaving the option open for later. However, I also know people who set a date and then proceeded to make a serious attempt on their lives. And this is when the deadline merely signified, “It's gone on too long now.” rather than, “It's gone on too long and I am about to lose all my income."

Last January, Aliquant wrote this post about how, feeling cornered by the benefits system, suicide seemed quite rational. It's a powerful post because Ali was so articulate; she simply couldn't cope with the risk of more homelessness, further hardship or having to jump through any more hoops. Soon after, 5 Quid for Life was set up, a charity to help people like Ali survive when things go wrong. Since then, the benefits situation has been implicated in at least ten suicides.

(b) A disincentive to self-management. Looking after your health, when your health is poor, is jolly hard work. Taking unpleasant medication, getting the right amount of exercise, preparing and eating the right food, resting and sleeping when you need to, visiting the appropriate healthcare workers, getting new complications and injuries treated and resisting naughty behaviours that will set you back, can feel like a full-time occupation. If you know that after a year, you're going to lose all income, unless your health significantly deteriorates, then you've got another major disincentive to look after yourself. I don't believe for a minute that anyone would choose to make themselves more ill, to suffer more and to deal with more health-related rigarmorale, even to shorten one's life expectancy. But a system is being created where being a good patient, hard as that is, could actually cost you money.

I actually find it very distressing when people with far more energy than me fail to look after their health, although looking after is subjective and it is absolutely none of my business anyway. It's probably natural to worry about things that have happened to me happening to other people. However, as some disabled people involved in anti-cuts activism work themselves into the ground and expend twice as much energy in a week than I have in any given year, I am able to reassure myself that, as long as they stay alive, they'll probably wind up too sick to be effected by the time-limit. This situation is all kinds of wrong. There shouldn't be any advantage to getting sicker.

4. Damage Caused to Relationships

Money can't buy you love and poverty doesn't destroy it, but relationships can become a lot tougher when when one partner has literally no income and crucially, no means of bringing in money if they want to. I see three effects of this:

(a) The time-limit interferes with the future relationships of single disabled people. Lisa has written about how the combination of poverty and disability dramatically reduces one's romantic chances, and the prospect of complete financial dependence will make this worse. Means-tested benefits force claimants to either restrict themselves to very casual and discreet relationships or else to place themselves in complete financial dependence on a partner the moment they begin living together – a moment which is rarely well-defined.

(b) The time-limit threatens to undermine existing relationships. Sue has described her fears of becoming a burden on her husband. As Shana Pezaro described, desertion is not an uncommon experience in the face of chronic illness, especially among heterosexual women, and the prospect of total financial dependence will only add to this problem. Some families, especially those with children, may even find that they would be financially better off if they occupied two different households.

(c) The time-limit makes disabled men and women, who are already more likely to experience domestic abuse, even more vulnerable. Disabled people are already twice as likely to experience domestic violence. If you have no income at all, then it becomes easy for an abusive partner to completely deny you access to money, to complain about or restrict your expenditure, whether on food or phone calls, bus fare or medicines. It becomes easy for an abuser to tell you what a burden you are, and how you owe them or deserve to be mistreated, when you are both financially and practically dependent on them.

Unemployed single parents of small children have long had this problematic status, where benefit rules prevent them from having romantic relationships which progress out in the open and at their own natural pace and where the prospect of complete financial dependence can make a person feel as if they are less valuable. This is one of the major reasons that make such families particularly vulnerable to dysfunctional and abusive relationships.

The government's motives for this are deeply cynical.

Years back, when ESA was first discussed by the then Labour Government, the disability blogosphere and messageboards were awash with anxiety about sick people being pressured into work that they just couldn't get. I wrote a post on BBC Ouch! explaining that logically, we had nothing to fear. If Employment Support Allowance was to have a "Work Group", the government simply had to get these people into work. If vast numbers of us were placed in this Work Group, who didn't have a hope of getting a job, we would become bad statistics.

The Conservative Government came up with a way round this, which is to make these people disappear. Anyone on this band of ESA with savings or a working partner will simply disappear after twelve months. They will not add to the unemployment statistics because they have been declared unfit for work. They will not be claiming any benefit at all.

Here is the link I gave you at the top: This is what we need to do now.

(A draft version of this may have appeared in your feed-reader last night - sorry about that! I was so confident that I couldn't accidentally publish my drafted post in the new style Blogger (as I often did in the old one), but hey, I found a way.)

The Welfare Reform Bill: What's Wrong with Personal Independence Payments?

2012-01-08T12:14:00.000Z

Edited on Monday 9th January to add a link to the report Responsible Reform [pdf]. Please read it and spread the word.

I put this together in my snail-like manner over Christmas, together with two other posts about the Welfare Reform Bill which is going to the vote in the House of Lords in the next few weeks. I mean these posts to be basic primers for anyone who doesn't know what's going on with disability benefits in the UK. Tomorrow, Kaliya, Sue and others are publishing their research project on the way the government has handled the abolition of Disability Living Allowance, so it seemed a good moment to post my little summary.

Personal Independence Payments are set to replace Disability Living Allowance, a UK state benefit awarded to disabled people who need help getting around or looking after themselves. This benefit has nothing to do with whether or not someone is in work, and is not means-tested in any way. The current criteria are very strict, fraud is estimated at under 0.5% and legitimate claimants frequently have to go through a demoralising appeals process in order to get the benefit. Despite the public shock at Sue's recent rejection, I don't think I know anyone with a subjective condition (one dominated by pain, fatigue, weakness or mental symptoms) who has not been turned down at least once. In fifteen years, I have been turned down twice, appealing successfully both times.

The Government have made it clear that they wish to reduce the DLA caseload by 20% in order to save money. There is no evidence, not a scrap, that anyone claiming DLA has more money than they need - check out the Where's the Benefit? Podcast for some examples of what this money is currently spent on. The Government have also frequently muddled the issues of Disability Living Allowance and incapacity-type benefits, speaking as if reducing the numbers on DLA equates with getting more disabled people into work. On the contrary, DLA is an essential benefit which enables many disabled people to stay in work.

The criteria for Personal Independence Payments [pdf] are not yet set in stone, but they are stricter than the already very narrow DLA criteria and there are some things which are quite clear. In May, Lisa read the draft criteria and found that she, as someone with congenital impairments and chronic illnesses which stop her working, walking more than a few steps and put her at ongoing risk of broken bones (she has broken her back rolling over in her sleep), would be entitled to nothing.

The most significant changes are:

Someone who is able to propel their own wheelchair will be treated as if they have no trouble getting around at all, as if anywhere they might work, live in, shop or visit and any vehicles they travel in will be completely accessible. This is an absolute disaster for manual wheelchair-users.

The need for ongoing supervision is not mentioned in the PIP draft criteria. Currently, DLA is awarded to people who need a great deal of supervision at home (e.g. to be around if they fit, fall or faint in dangerous cirumstances, to make sure they don't harm themselves or wander off etc) and to people who need someone with them when out and about. Quite obviously, if people don't have the supervision they need, they are going to run into serious trouble.

DLA is a gateway benefit. For example, if you are in receipt of the middle or higher rare Care Component of DLA, then a partner, friend or family member who is unable to work full time because of their caring responsibilities may be able to claim Carer's Allowance. Receiving some rates of DLA can mean being exempt from VAT when you buy essential equipment. If you are in receipt of the higher rate Mobility Component of DLA, you are automatically eligible for a Blue Badge. You can also use your benefit to rent a suitable adapted car through the Motobility Scheme (nobody gets a free car!).

The Blue Badge and Motobility Schemes subsidise disabled car-use for a very good reason. While many non-disabled people regard their cars and car use as essential, people with mobility impairments have absolutely no choice about needing to use a car, needing to park in busy or expensive car parks or directly outside the place they're going to, including their own homes. Often we don't have any choice about the type of car we need, because we need adaptions or we need a large enough vehicle to carry paraphernalia like wheelchairs, scooters and so on. Many wheelchair-users will lose this help altogether.

These changes are going to lead to

1. A major increase in unemployment among disabled people.

Public Transport is not wheelchair accessible and even when it is, wheelchair-users frequently face discrimination. The move to PIP will mean that some employed wheelchair-users will lose their means of getting into work, if they are no longer eligible for the Motobility scheme and can't otherwise afford to run a car or take taxis everyday. Wheelchair-using job-seekers will have their chances of employment reduced even further, because they may not be able to travel further than they can roll. Given that, as Emma points out, even our streets and pavements aren't yet fully wheelchair accessible, this may not be very far at all.

The changes to the Care Component will also effect people's ability to work in less obvious ways.

2. A major increase in hospital admissions, medical emergencies and preventable deaths among disabled people.

Last month, Lisa wrote a powerful post about the new PIP, describing how she wouldn't survive without the help she currently gets, and if she did, her quality of life would be so poor that it would not be worth going on with. If disabled people don't get the help we need to pay for support, appropriate equipment, transport and so on, then depending on our cirucmstances and personal priorities, then we will be forced to

Do much less. Go out less, have less social contact, quit our jobs, get less exercise, shop less, cook less, maybe eat less and certainly wash less. None of this is good for our physical or mental health. Our worlds will shrink and our health, happiness and life expectancy will adjust accordingly.

Try to manage without the appropriate support, equipment and so on. This could mean attempting to push beyond our limitations, until our bodies or minds give up and things start falling off. Where there is a need for supervision, managing without supervision is likely to prove extremely dangerous. The physical isolation involved in losing our cars or money to get around is far more dangerous because we are disabled.

People spend their DLA on a whole variety of different things, as you can hear in the Where's the Benefit? Podcast. Some of those items are about quality of life, such as being able to leave the house, see friends and family and so on. But most of these things are about survival; eating, basic hygiene, getting appropriate rest and sleep, taking medication, attending medical appointments and so on.

Without this help, people will get sick, people will get hurt and some people will die.

3. A major increase in the social segregation of disabled people.

Sometimes people remark that there seem to be far more visably disabled people about these days; wheelchair and scooter users, people with white canes or assistance dogs, people walking with sticks or crutches. And you know what? This is almost certainly true.

Some of us could only have survived infancy in the last three or four decades. Some of us wouldn't survive even day to day life without modern medicine. However, a huge number of us would have lived, but would have never been able to leave the house even twenty or thirty years ago. And then, even if we did, there would have been not much to do and not many places we could go.

As Mary says, disabled people are not dead. Most of us are capable of living full and enjoyable lives, if we get the help and accommodation we need. DLA has played an important part in that.

Disability Living Allowance has been a huge part of increasing equality for disabled people. It has been our means of working around the problems of a disabling world, our means of, at least partially leveling the playing field and doing it ourselves - not relying on charities or government organisations to determine exactly what we need in the way of transport or help at home. Personal Independence Payments threaten this for a great number of people.

On Saying Grace

2012-01-06T15:10:00.000Z

Stephen and I talk a lot about the positive aspects of living with either set of our parents and do our best to either work round or ignore the bad stuff - none of it is forever, after all. We've started to refer to "our town house" (Stephen's folks' place) and "our country residence" (my folks' place), although neither of us goes by Earnest, wherever we are. Quite unexpectedly, apart from the company of Stephen's parents and the poodles, one thing I really love about life at our town house is saying Grace at mealtimes.

Everyone sits down together, the room falls quiet, someone thanks God for the meal and everyone begins to eat at the same time.

Mealtimes are very different at our country estate. At my folks' house, you're summoned to the table a full ten minutes before being presented with food, then seconds later asked why you haven't started because it's going to get cold, even though nobody else has sat down yet, there are phone-calls and political debates going on and at least one person rollerskating around the dining table, if not an entire conga line. If you're the one to have prepared a meal, then you have to give several verbal warnings that it's almost ready before physically shepherding everyone into place ready to eat it.

It's not that I find the chaos irritating, I just can't cope with the stimulation. My digestive system requires at least some degree of peace and stillness in order to concentrate on the task at hand, let alone what I need to taste and actually enjoy my food.

And I do enjoy my food and am very grateful that I can. These days, I have a healthy appetite and always seem to have lovely tasty and healthy things to eat. I've had periods of my life when, due to all kinds of reasons, food has had little potential beyond fuel. So I'm grateful for my good fortune, that I get to break bread with people I love and everything is all right. And of course, together with music and love-making, food provides a rare opportunity to snatch some sensory delight from a body that rarely musters comfortable.

So Grace works for me and I've been trying to think up a secular version. After one big family Christmas years ago, a cranky aunt complained of Grace, "Typical that they should all thank God, a man, for their dinner, when nobody has a word of thanks for the woman who's been slaving away in the kitchen all morning."

In our families, there are always thanks for whoever cooked, and indeed anyone else who contributed to the meal, but maybe a formalised version of that is the way to go?

Once everyone is settled at the table with food in front of them, one person says, "Thank you to A, who cooked the dinner and B who peeled the sprouts."

and instead of "Amen," the remaining company say, "And thank you, C, for laying the table. "

Something like that. Not, I hasten to add, that my gratitude ends at the people I'm eating with. All kinds of good fortune conspire to provide me with good food and company in a warm house. But it's a start.

Never Been Thirty-One Before

2011-12-24T16:21:00.000Z

Today is my birthday and I can safely say this has beenthe 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 lovedbeing thirty. I hope I will love thirty-one just as much. I havenever wished to be another age, but I have particularly enjoyed myage. I do now. I feel like I earned thirty-one. I have a lot ofstories to tell, but I've still got everything to look forward to.Oddly, entering my thirties has coincided with being met, for thefirst time ever, with the assumption that I am younger than I reallyam. Previously, people were always adding ten or fifteen years.

This year, things seemed to get done. I'mamazed at what I have just got done this year. Art projects, craft projects, writing projects. This year, it seems, if I put my mind tosomething, 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 paintedmore, 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 aplay. Admittedly, the productions I saw this year were too long andpain overwhelmed me towards the end. The best was King Lear,performed in an abbey ruin in Wales, complete with realistic stormconditions throughout the second half. It was August, I was verywell wrapped-up but I can't imagine I will get as cold as I was thenthis 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) byAeschylus 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 toknow whether we were dealing with a thriller or a farce – in anycase, we laughed throughout.

The only thing I reallyhaven't done enough of is reading. But I did re-read the His DarkMaterials trilogy with Stephen, which was an absolute joy. When weset out to take turns to read it to one another, I thought it wouldtake a few years – especially as neither of us can read out loudfor long and both of us are prone to falling asleep when we are readto. 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!

If I were a rich man

2011-12-19T10:45:00.000Z

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.

The Bechdel Test & Small Furry People-Eating Aliens

2011-12-12T11:08:00.000Z

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.

Dog Rest Ye, Terrier Gentleman

2011-12-08T21:08:00.007Z

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.

I 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.

I 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.

On Languages, Both Dead and Deaf.

2011-11-25T10:33:00.002Z

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?

Be Nice & Grow A Thicker Skin

2011-11-11T17:22:00.003Z

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.

In bed with my paintbrush

2011-11-07T16:23:00.001Z

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.

Thus 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.

This 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.

The Disability Hierarchy 6: Old Age & Treachery

2011-09-27T15:47:00.000+01:00

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

Domestic Violence. Ha ha ha!

2011-09-16T10:19:00.000+01:00

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.

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.

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.

Ugh.

..............
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.

The Disability Hierarchy 5: Wheel Life Drama

2011-09-12T12:20:00.000+01:00

By 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.

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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.

The Disability Hierarchy 4: Diagnosis Matters

2011-09-01T17:25:00.002+01:00

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.

The Disability Hierarchy 3: Only Yourself To Blame

2011-08-26T11:24:00.000+01:00

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.

The Disability Hierarchy 2: Born this way

2011-08-22T12:50:00.000+01:00

People with congenital impairments occupy a strange space in the disability hierarchy. On the one hand, people born with physical impairments have automatic and complete legitimacy and the right kind of disabled children are a very popular image. The Tiny Tims of this world, who are aesthetically cute, intelligent and sweet-natured and who demonstrate – or can be made to seem to demonstrate – uncanny levels of wisdom, gratitude and stoicism, in the light of a miserable existence. They make for great tear-jerking documentaries and feel-good telephons, they put things in perspective for everyone, bless their feeble little hearts.

Lots of disabled children are utterly unacceptable. Some of them are difficult to look at, some of them are impossible to communicate with, some of them behave in extreme and disturbing ways. And one way or another, parents - especially mothers – will be held responsible. The parents of children with many types of learning, intellectual and neurodevelopmental disorders are continually suspected of pathologising or indulging bad behaviour, of being neglectful or overbearing as parents, having fed the children the wrong foods or allowed them to watch too much television, even of faking disorders in their children in order to get benefits. My grandmother was accused of failing to manage her pregnancy properly when she had a child with Down Syndrome in the 1950s, whereas Sarah Palin was criticised (or glorified) for having carried a wanted pregnancy to term in the 2000s. Even the European Courts have recognised the discrimination by association sometimes experienced by parents and carers.

With any luck, children grow up (although it makes a better story if they don't). Unfortunately, even the cutest people with congenital impairments fall a long way down the disability hierarchy when they become adults.

The first problem is the absence of a really tragic narrative. I imagine it is fairly impossible to tell your own life story and describe the events of your own birth, let alone your own conception, as a disaster – very few people wish they had never existed. Certainly, few people I have ever known with congenital impairments see their impairments as tragic at all, even if they would rather be without them - and many would not. If you have never been able to walk or see or hear, then only curiosity and the frustrations of the disabling world are going to make you mourn abilities you never had. Indeed, some deaf signing people described themselves as a linguistic minority and refuse to be called disabled (although I just called them disabled out of spite!).

Often charities and some parents attempt to work round the absence of tragedy, by changing the narrative. Autism has been one area where there is a massive chasm between some charities and autistic activists about what the experience of autism is. Some charities, profiteering quacks and occasionally respected scientists have largely ignored the existence of contented autistic adults, talking of “normal” infant children stolen away by autism or trapped inside the “Shell of Autism”. Whereas all those autistic adults who have been able to express an opinion of the subject – at least that I know of - see their autism as an intrinsic part of who they are. (It's not entirely on topic, but here I must link to Stephanie's excellent post on False Blame, about how the stress of disability is often confused with autism itself - and undoubtedly other conditions too.)

The second problem is the absence of any strong narrative at all. When adults with congenital impairments are featured in the media or in fiction, there is very often a great emphasis on their childhood experiences. In last weeks' Radio Times they interviewed three actors from a reality TV programme called Seven Dwarves. Personally, I think there are loads of questions to ask disabled actors, especially about performing those kinds of roles, but almost the entire piece was dedicated to what it was like to grow up with dwarfism and the rest was about why being short doesn't matter if you're plucky enough.

Many non-disabled people had something to overcome in order to grow up into well-adjusted adults, but non-disabled people don't need to constantly explain their lives in terms of either tragedy or triumph over adversity, so they're allowed to leave it behind. An adult actor may well talk about experiences of a tough childhood, but a relatively unknown actor is unlikely to be asked about that or think to raise it. Gay and non-white British actors are only likely to be asked what it was like growing up different if their childhood might be relevant to a role – and no, they didn't even try to ask the question, “How did growing up short prepare you for the role of a musical forest-dwelling miner harbouring a runaway teenager in exchange for catering and domestic work?”

The third problem is that people who have been disabled for a very long time often lack the demeanour of the good cripple. Not always, but often. Our culture finds comfort in the kind of victim-heroes who are humble, apologetic and grateful for whatever scraps of accommodation and tolerance they can be afforded. The idea of disabled people as charitable causes not only denies us power and controls the level of inconvenience and expense other people have to go to in order to let us in, but it makes non-disabled people feel better. And when you first become disabled and generally experience all manner of blows to your self-esteem, you want to make people feel better. You feel you need to justify your own existence, or else apologise for it and you are fairly amazed, let alone grateful, when people do treat you like a human being again.

The disabled people I know who were disabled as children or young adults tend to be more politicised (as happens to many young people who find themselves marginalised), they tend to be more sensitive (occasionally over-sensitive) to patronisation, tokenism and exclusion. They feel we have a right to be here and to be included. They often lack the humility and fragility of tragic victims, in a culture which conceives and is comforted by narratives in which disability is all about tragedy.

And that's really a we rather than a they, because I was disabled as a teenager. But it was late enough that I do have a nice tragic narrative and there are many ways in which my illness makes people more comfortable about me than they are about most people with congenital impairments. There are other ways in which it does not. As I said already, it's complicated.

The Disability Hierarchy 1 - An Introduction

2011-08-08T19:51:00.001+01:00

I've touched on the disability hierarchy many times before, but there have been so many things lately that have got me thinking about this again. I began to write one post, but it threatens to extend to at least three. Sorry!

The disability hierarchy describes the way that different disabled people are more acceptable than others in our culture. More acceptable to be seen, to be heard and to be accommodated, as well as effecting the way we are treated every day and things like how, if at all, people like us are represented on television and in culture. Government, the media and even sometimes our own representatives use this hierarchy to differentiate between those of us who are deserving of help and support and those of us who are not.

This doesn't mean that if a disabled person ticks certain boxes, they get a better deal than another disabled person who does not. But there's a reason why a politician can compare (inaccurately) the number of blind people and the number of people with alcoholism in receipt of a disability benefit and make it sound like a scandal. There's a reason why, when arguing against unfair time-limits on incapacity benefits, another politician can talk about the number of people with cancer who will be affected, ignoring thousands of other people with a variety of physical and mental, chronic and terminal conditions who are in exactly the same position. This doesn't mean it is better to be blind than to have alcoholism, or that it is better to have cancer than emphysema, MS, bipolar disorder, autism, back injury etc.. It merely means that society finds some disabled people more acceptable.

As with all matters involving social privilege and disadvantage, the hierarchy is complex and dynamic. This is not a hierarchy of impairment – although the nature of impairment matters a lot. Nor is this hierarchy based on how much sympathy a person is seen to deserve, although this is another important factor given the dominance of a Tragedy Model of Disability. This hierarchy is about what makes people comfortable, as against what makes them uncomfortable, when they consider disability and difference.

So for example, a fit young white male soldier who has lost a single limb in combat is a very acceptable disabled person – a hero, in fact, near the top of the pile. The impairment is entirely physical, easily understood and relatively uncomplicated in its effect. These chaps receive compensation for their injuries and the very best medical care, cutting-edge prosthetics and so on . His injury has been acquired in heroic circumstances and it doesn't interfere too much in his ability to be an attractive young physically-active masculine man.

Young male veteran amputees are a very common image of disabled people. It's possible that they appear on television more than any other group of us, often engaged in some sporting activity "despite" their impairments, reinforcing their hero-status. As with all disabled people in film and fiction, they are sometimes embittered by their injury, but Dr No is the only amputee mega-villain that springs to mind. And on the subject of springing, there's Harold's uncle in the wonderful Harold and Maude, who salutes with his empty sleeve by use of a pull-cord, but his injury did not, like so many other disabled characters, lead him to a desire for world-domination.

The soldier with an amputation is far more acceptable than his colleague who performed the same heroic deeds and acquired severe facial burns. Nobody would stop short of calling the veteran with burns a hero, but he doesn't make such a great picture. Burns are far more medically and socially complicated than amputation. Heroes with burns are much less common on television. They are much less common in fiction and film, and burning as a injury is frequently associated with turning evil (e.g. Darth Vader, too many DC bad-guys to mention, plus at least seven James Bond villains have some kind of scarring) or extreme social isolation. Simon Weston is one famous veteran with burns, but he made himself well-known by offering up his experience to others - he made an impact on my own life when I heard him speak as a disabled teenager. He is currently advising the Downton Abbey crew, since the First World War is about to break out in the drama.

The veteran with burns will, in turn, be more acceptable than his colleague who came home physically unscathed but has persistent Post Traumatic Stress Disorder. PTSD can be extremely complicated, painful and dangerous to a person long after the injury is acquired. A person's susceptibility to psychological injury is complex, depending a lot on subtle factors around the individual, the trauma and its direct aftermath, and has no bearing on one's courage or strength of character. Yet there are still some voices who talk about soldiers with PTSD as if they simply weren't cut out to do the job they signed up for. However, even the veteran with PTSD is more acceptable and admirable than a civilian with PTSD following a car crash or a sexual assault. The veteran was at least trying to be a hero when he acquired what is seen by some as an unheroic impairment.

So that's all about impairments, but how these people are treated changes again if say, we change their gender. Mental ill health is perhaps seen as more acceptable in women, but it is more expected and thus seen as less serious – how did she expect to cope with the explosions and the corpses in the first place? When a man has a mental illness, his defenders often point out how very masculine he is, not the kind of person to cause a fuss or cry (like a girl) or generally be a sissy. Meanwhile, physical injury of any kind is seen to compromise a woman's attractiveness to a much greater extent, and her attractiveness is seen as more important in the first place than say, physical strength or independence (in turn, women with conditions that cause physical weakness are more acceptable than men with the same conditions). So our burnt or amputee soldier becomes less acceptable, because she makes people uncomfortable. At the same time, women don't look like soldiers, so you are less likely to see a fit young woman with a missing leg and think she must be a hero. She probably lost it trying to parallel-park.

Similarly, tragically, it is also rare to see wounded black and Asian soldiers represented, as if they aren't proper British soldiers. In fact, it is rare to see disabled people of colour at all on television or in film. Our culture seems to struggle with people who tick more than one “diversity” box; being black or Asian, queer, disabled or female means being under-represented, but being more than one of these things and you might as well not exist. The exceptions I can think of coincide with the catergory "Comic book villains Samuel L. Jackson has played". The vast majority of disabled people represented anywhere are white, straight, cisgender men.

Meanwhile, the relative privilege of being a veteran among disabled people lasts only as long as people know that you were injured serving your country. It fades with time. It fades when, for whatever reason, you stop looking like a soldier. It goes if you stop acting like a hero. For example, alcohol abuse is a significant problem among our current and former military personnel, but an alcoholic is no kind of hero at all. Even when he has other heroic impairments, a young man loses a great deal sympathy and acceptability when he drinks to excess or takes drugs. We expect these men to use alcohol as a coping mechanism, to remain strong and manly, but then we see it as a personal weakness when this gets out of hand. Some of the alcoholics who claim disability benefits will be ex-service personnel.

It's worth noting that all the people I have described here may not actually identify as disabled. Young amputees with very good prosthetics often don't, because their impairments are relatively minor and certainly with prosthetic feet and lower legs, most other people may simply not know about their impairments. In the documentary series about facial disfigurement Katie: My Beautiful Friends, young people with severe facial burns and other disfigurements frequently referred to their gratitude that at least they weren't disabled. Of course, Post Traumatic Stress Disorder is not always a long-term condition, but almost every year at Blogging Against Disablism Day, people with chronic mental ill health express doubt about whether they count as disabled.

And alas, refusing to identify as disabled is itself often seen as an admirable stance. When someone who has a same-gender lover says that they're straight, we find that a bit silly, but when someone with a missing limb says they're not disabled, it only adds to their perceived heroism. I think usually people do this because they feel that real disabled people are less fortunate than themselves, but there's also an element of I could call myself disabled but I'm positive and strong and I'm not going to let my misfortune get the better of me by associating myself with that bunch - I speak from guilty experience. It is ironic that this very defiance is part of the dominant disability narrative, and part of what makes an acceptable disabled person acceptable.

Top Gear & Disabled Parking Spaces

2011-08-01T11:52:00.003+01:00

I can't believe I'm blogging about Top Gear. Stephen has done a much better job than me so go there and read that instead.

Stephen loves cars. From childhood, he has been obsessed with cars, their design, their innovations, their specifications. When he is in great pain, as he often is, talking about cars, looking at pictures of cars and watching programmes about car helps to keep him calm and thus as comfortable as possible. This may sound sad, but I'm the same with craft projects and materials, leafing through a Panduro catalogue or talking through how I'm going to make my nephew's birthday present is highly therapeutic. And naturally, these interests are contagious. Stephen has learnt the difference between découpage and appliqué, I have learnt that the Smart ForTwo and the Caterham are the only production cars to have a De Dion suspension system.

Then there's Top Gear. Top Gear is many strange things, but among them, it is the only regular programme dedicated to cars on a television channel you don't pay for. I could say some pretty scathing things about it's production and presentation, but that's a matter of taste. It is a taste that neither Stephen nor I share, and as such we both find it fairly annoying and sometimes offensive. However, it features lots and lots of pretty footage of cars and occasionally some interesting data. Not as much as it could – and in fact, to maintain my blood pressure on Sunday night, and because I am a square and I don't care, I was using a stopwatch to calculate out how many minutes of the hour actually featured a car, its interior or its engine in frame. I was guessing it would be less than half, but I never got far enough to see.

Our expectations were especially low because they were talking about electric cars. Quite apart from it's cultural position, Top Gear does not feature its presenters reviewing cars from their own impartial or even personal perspective. Top Gear is funded in part by the petroleum industry and depends on good relationships with the big car companies, the majority of whom still make most of their profits from the sales of gas-guzzlers. Top Gear is currently being sued by Tesla, having featured their high-performance electric car and pretending that it had run out of electricity and broken down on set. Similar tricks were played with the electric cars on Sunday, things went wrong that wouldn't normally go wrong, they went to one of the few counties in the UK where there are no public charge points and so on. And this was irritating, but I was happily distracted with my stopwatch experiment. But then....

The cars were parked in clearly marked disabled parking bays.

Parking in a disabled bay is illegal if it is on public property. On a private carpark, landowners have the right to clamp vehicles and issue big fines to offenders. It is possible – probable even – that the Top Gear crew got special permission from a private landowner to park in the disabled bays, but the viewer isn't to know this. If this had been the case, it would have been small effort to cover up the markings on the tarmac – even edit them out of what was effectively a still shot - but they didn't.

I'm not someone who goes crazy every time I see someone illegally parked in a disabled parking bay. I've been blogging for all these years and I can't remember ranting about it before*. But of course it disappoints me, it's a small chip in my faith in humanity. Disabled parking is not about convenience, nor is it a compassionate move to make life a little bit easier for disabled people. Usually, whether that parking space is available makes the difference between whether we get to do something – attend an appointment, meet up with a friend, shop, post a letter etc. - or not. But people don't know this and I make excuses for them (I'm concerned how much of this post seems to be about strategies I use to prevent my blood from boiling). I imagine that they have a blue badge that has fallen out of sight. Or they are waiting for an up-to-date badge to come through the post (they can be slow sometimes). I imagine that whilst the kid in the convertible managed to exit his car without opening the door, within a few yards down the road, the pain he lives with will have rendered his gait to a stagger.

But when it happens on prime time television, watched by more people than read The Daily Mail?

Honestly? It shook us up. We'd been talking about the reception we get from people when out and about together lately and the fact that our immunity to negative comment didn't last. It felt personal. This article Wheelie Catholic linked to described the abuse of a disabled parking space as a micro-aggression, a small act of contempt, though not quite malice, that people with mobility impairments face in our everyday lives. But it loses the micro when it is broadcast and normalised without comment. Added to this, a nice visual metaphor when the camera sweeps between the electric cars driving along the road and a woman with a mobility scooter riding the pavement beside them, along with comments about things with batteries being rubbish.

We turned the television off and e-mailed a complaint to the BBC. Stephen grimly speculated that they might have done this just so that they could laugh at people who complained next episode (which does seem a publicity strategy) before we realised that it had been the last in the series. Good, we can't be laughed at again.

This morning, we used our currently limited internet connection to see if anyone had noticed. Rob had, inviting the comment that Top Gear is a "man's programme" so that's okay (?!). Apart from that, much of the talk seemed to be about a very special piece that they did at the end of the show – which we missed – when they featured heroic amputee veterans involved in the Dakar Rally. I can't comment on how they handled this, except that the tired old triumph over adversity narrative seems to be what others have picked up on.

Unfortunately, I am not a hero. I just want to go about my business like everyone else. And for that, I need the single ounce of respect it requires a person not to park where they're not supposed to.

* I had a quick look through and actually found a post in which I argued that the Blue Badge (disabled parking permit) should be made less profittable. To be honest, I can no longer stand by that one entirely, but hey.

Google Plus & Why Pseudonymity Really Really Matters

2011-07-26T22:05:00.004+01:00

I will try to make this brief. Google Plus (still in beta) wants users to use their “real” names and has already closed a number of accounts whose names it considers pseudonymous. A lot has been written about this, but I cannot rest until I've stuck my oar in.

Pseudonymity is absolutely essential for all kinds of on-line interaction. Why? Five reasons.

1. Gender affects everything. The first and single most useful thing I learnt about pseudonymity on-line, when I was sixteen years old, was the joy of not being immediately identified as a woman. You learn an awful lot when you allow others to assume that you are a man (something I touched on in our review of Catfish). Quite apart from your every opinion being judged in the context on your gender, sexual harassment is an enormous issue for women on-line. The Feminist Philosophers blog were onto the fact that gender is the first thing Google Plus asks, some weeks ago, suggesting that we all say "Other". Randall Munroe (as in xkcd) has also written about this matter. But obviously, for most of us, selecting other makes no odds if we're forced to use our “real” gendered names.

2. In meat-space, you can talk to people and enter into discussion without giving your name and certainly without giving your surname. It is normal to get to know people very well by a nickname or first-name without having a clue about their last-name, let alone have a casual conversation with them. If a screen-name requires a first and second name, you become more exposed on-line than you ordinarily are off-line.

3. (a) The internet has historically allowed much greater freedom both from and to your various identities. It is possible to come out on-line when you're in the off-line closet, it is also possible to interact on-line without other people being aware of your physical appearance, gender, sexuality, disability status, race, religion etc.. This is a very good thing. It creates an environment where others are forced to be more open-minded in their response to you than they otherwise would be. It also allows us to explore identities and talk about experiences when it would be impossible to do this with our nearest and dearest looking on. It's not about pretending to be someone else. Using a pseudonym on-line is like going to a different part of town. This is especially important for young people who find themselves marginalised, isolated and bullied – without pseudonyms, their bullies can follow them everywhere.

(b) Lots of people – like Bug Girl - have jobs where they cannot express certain views under their professional name (usually their legally-recognised name). These views don't need to be extreme or kinky or anything others would disapprove of, but some companies and especially governmental organisations just don't want anyone talking sex, politics or religion in contexts where they can be identified as their employees. Sometimes a "real" name is enough for such identification.

The possibility of multiple identities is not just a new liberating effect of the internet – it's what people have always done, the internet just makes it better. I don't tell lies or make any effort to conceal anything about me, but I am a slightly different person in different contexts. I use slightly different language and discuss different subjects when talking to my nephew or my Granny or my doctor or this friend or that friend. The only difference on-line is that I have to use different names in order to carry this off because this world is made of searchable text.

4. Names are massively important to us. Both the names we have been given and the names which we choose. The ability to call yourself by a name you feel at home in is not a universal privilege. We know this very well in British History, having seen both the coerced Anglicisation and later attempts to de-Anglicise Irish, Scottish and Welsh names. My own surname is a product of this process.

Outside English, there are completely different ways of coping with names which don't fit into the neat Given-name Family-name, with no special characters model and can't really be fit into it. Urycon has a great post about this and Chally has touched on this matter here. The removal of flexibility with names not only effects one's ability to use a chosen name, it can also effect one's ability to be known by the name given to you by your family.

What's more, chosen names are not themselves disposable – as Skud, who has had her Google Plus account suspended wrote last month here:

“People sometimes speak as if pseudonymity is the same as anonymity, or suggest that pseudonymity is nothing more than a way to avoid accountability for one’s words. It’s not. Persistent pseudonyms (those used over many years and perhaps across multiple sites) can accrue social capital and respect just as “real” names can, and be subject to the same social pressures towards civil behaviour if the community has a strong culture of respect. Without a culture of respect, real names won’t help. With it, real names won’t matter."

I am quite proud of being the Goldfish. Some of you know my real name, but this is the authentic me too. I am the Goldfish. Coo coo catchu.

5. If there is any evidence that forcing people to use “real” names reduces abuse, it doesn't seem to be very forthcoming. Geek Feminism has posted the brilliant Anti-Pseudonym Bingo and a request for such evidence. My experience is that scoundrels are more than happy to be scoundrels in their own names – it's far more subtle and powerful social pressure that inhibits verbal abuse, harassment and so forth. And that pressure can only exist where everyone feels comfortable being themselves, whichever version of themselves they choose.

There's an on-line petition asking Google to allow pseudonymity on Google Plus here. I have probably missed other important posts, I've got limited on-line time at the moment and generally feel rather out of the loop.

"Clare's Law", Domestic Violence and a little knowledge being a dangerous thing

2011-07-18T11:29:00.007+01:00

The government is considering whether women should have the right to ask police if their partner has any violent criminal convictions. "Clare's Law" is being proposed in memory of Clare Wood, a woman who was murdered by a man she met on Facebook (a detail that isn't very pertinent but has been made much of in the press). Leading the campaign, Hazel Blears said,

“Women in Clare's situation are often unaware of their partner's previous
relationships and this can mean they start a relationship with someone with no
idea if they have a violent past. Clare's tragic death shows how vulnerable
women aren't always protected under current law, and until women are given the
right to know if their partner has a history of serial domestic abuse, they
can't be sure of the risk that they face.”

This makes me very sad and frustrated. Incurable Hippie has already raised some concerns. Let's break down what Blears has said here and why it misses the point on how domestic violence works:

Women in Clare's situation are often unaware of their partner's previous relationships and this can mean they start a relationship with someone with no idea if they have a violent past.

People targeted by abusive men and women are always unaware of their partner's previous relationships because abusers tell lies. Abusers are usually good liars and vulnerable people often believe those lies. Lies might include, “My ex lied to the police to get me into trouble.” Abusers are very good at telling stories about how they have been hard done by and mistreated by others because that's how they explain events to themselves, let alone everyone else.

My ex accused me of slagging him off to everyone before I had told anyone about the full extent of the abuse. When I was with him, I believed his story that I was the only person who had provoked him to violence, but with hindsight I realise this is extremely unlikely. He'd described a few previous relationships which had ended abruptly and where friends had taken sides against him. He only ever confessed to one incident, when in his youth he had hit a girlfriend when they were both drunk and she was “hysterical” and throwing things at him – it was practically self defence, but of course he felt bad about it years after. In that case, he gave his victim a black eye, so conceivably this was something I might get to hear about some day.

As far as I know, my ex has never been reported to the police for anything. The whole problem with domestic violence is that you often don't understand what is happening while it is going on and afterwards you just want to get on with your life and have nothing more to do with your abuser. Unless you are seriously injured, there are real limits to what you could do about it even if you were motivated to act. The vast majority of people who have committed violence against a partner will never have come to the attention of the police.

Clare's tragic death shows how vulnerable women aren't always protected under current law

If Clare Wood had known about the history of the man who went on to murder her, she would not have entered into a relationship with him. The question is, had this law been in place, would she have asked the police about him? Most women do have relationships with men, but how many women would actually ask police about their new partners? And how many men would feel less than very uncomfortable at the idea that their girlfriend had run a police check on them?

Even having experienced domestic violence, it would never occur to me to run a police check on any new partner. If a woman has any reason to feel suspicious about a new partner, something is very wrong. It doesn't mean the chap is a villain, but it would suggest to me that something to do with those two people is at least slightly amiss. As in, they should probably leave it there.

But there's also this issue of "vulnerable women". When I consider my own vulnerability, my big problem was that I didn't trust myself. When things went very wrong, I didn't take my own distress seriously. I let someone else tell me what was okay and what wasn't. And this new law seems to be saying,

“Ladies, do you think your new chap may be a violent bully? Don't trust your gut – ask a policeman! Has he hit you once or twice? Well not to worry your pretty little head. If he has no criminal convictions, then he's probably a perfectly nice chap and the violence is just something you bring out in him.”

Added to this is the damage even the reporting of such an idea does to gender equality. One of the reasons that domestic violence prevails is ideas about the normal behaviour of men and women. Even with everything I knew about this, even having studied psychology, part of me bought the line that my ex couldn't really help himself – I'd felt angry to the point of wanting to punch people on occasion but of course, I didn't have testosterone to contend with. We accept male anger and aggression as normal, even necessary for heroism in our cultural narratives. As a very young and inexperienced woman, I didn't know where the line was between “normal” masculine anger and aggression, and abuse. Clare's Law promotes this confusion – it promotes the idea that there's a fine line and that line is only crossed when a prosecutable crime has been committed.

And this disadvantages everyone – not only does it cast men as dangerous to women and children until proven innocent, but it affirms the idea that domestic abuse is always men beating up women. Women are vulnerable, men are dangerous and any man who finds himself being abused simply doesn't fit into this universe. Men are much less likely to die at the hands of a partner or ex-partner, but they are only slightly less likely to have their lives ruined by abuse.

We need to make vulnerable people less vulnerable. We need to promote a culture in which all men and women have both the confidence and the practical and economic ability to make choices for themselves based on their own instincts and desires. The government are considering this new law, having made massive cuts to benefits, legal aid, funding to refuges and even police budgets. This government is making vulnerable adults a lot more vulnerable than they used to be – a law offering false reassurances to untrusting women is not the answer.

And, incidentally, following Clare Wood's death, the Independent Police Complaints Commission ruled that she had been badly let down by the police. Not the law, but the police who are supposed to enforce it. She had reported being sexually assaulted, threatened and harassed by the man who later went on to murder her, months before he killed her. The new law would only have saved her if she was suspicious enough to run a check at a very early stage, whereas the current law should have saved her regardless.

Until women are given the right to know if their partner has a history of serial domestic abuse, they can't be sure of the risk that they face.http://www.blogger.com/img/blank.gif

But they never can – and no-one should imagine that a police check can protect them or their children or anyone from anything. We need to address the social and cultural factors which leave some adults vulnerable, normalise intimate violence and allow abusers to get away with it. As Pippa says in her post, the idea that any woman might have her doubts about her new partner's temper, run such a check and be lulled into a false sense of security is truly terrifying.

Meanwhile, men who are a danger to women, anyone who has been repeatedly and seriously violent against anyone, perhaps shouldn't be out of prison in the first place?

And before I go, I have to say, there is nothing special about on-line relationships. People having a relationship with anyone who is outside of their existing circle of family and friends are slightly more vulnerable to villains of all variety, but there's nothing special about meeting on-line – in fact, it is possible to share several mutual friends with someone you meet on-line. Meanwhile, people get together with total strangers off-line and always have.

Here's a hand to lay on your open palm

2011-07-13T20:33:00.006+01:00

Holding one another's hand in public is a privilege Stephen and I rarely get to enjoy. Of course, there are a tragically large number of lovers in this world who cannot hold hands in public without fear of antagonism, abuse and even arrest. Thankfully, our obstacles are mostly practical.

You can't hold hands between two assistant wheelchairs, unless you can co-ordinate the pushers (neither of us can self-propel). You can't hold hands between powerchairs unless the controls are on alternate arms (although Stacey and Mia offer one beautiful solution to this). Scooters, however, provide the possibility of riding alongside one another and holding hands. I'm not all that great with a scooter, but just now we have access to two scooters and a broad and fairly lonely path between us, the woods and the beach.

There is a special art to holding hands whilst driving mobility scooters. Not only do you have to be closely synchronised with the other person, but you have to gauge and respond quickly to the subtleties of the other scooter. Different machines slow or speed up more or less on a gradient or on different terrain. And nothing brakes or turns as quickly as an ambulant person can, even if you have the same reflexes (which I certainly don't). So in other words, it takes far more concentration and is ever so slightly hairy. We meander a great deal. And of course, we take up space. Which isn't necessarily a bad thing.

Stephen is more self-conscious than I am, having been subject to a fair amount of harassment and hostility when out and about. He's lived in less friendly places and maybe as a young man, he is considered especially fair game to those kinds of people (not that disabled women are immune by any stretch, in fact we seem to get it nastier if less often). So Stephen is more conscious of the fact that we might be judged. That some people will find it a novelty to see disabled people together, let alone being romantic, in public. That some people will find it cute and some people will find it weird. That people will undoubtedly gossip about us. Stephen says there are places where it would be a bad idea for us to hold hands because of other people - and not just to avoid crushing their toes.

I know this is true, but I also notice advantages. So far we've always been out together in a fairly rural environment where lots of people speak to us, yet nobody has made comments about speeding (ha ha ha) or learner-drivers (ho ho ho) or any such thing - even when Stephen has been using the bright yellow borrowed “power trike” which looks very cool and can go very fast (you can't hold hands with that either, as it has manual brakes).

My hope is that together we exude confidence, and people don't feel the need to say a thing about our wheels. Either that or they have merely been terrified into friendliness and courtesy.

Incidentally, Wheelchair Dancer has written a little about the possibility of intimacy in being pushed, at the end of a post about the crapness of being pushed the general crapness of being pushed.

Funk to Funky

2011-07-06T21:57:00.001+01:00

The trouble with so much life going on, especially life plus ill health, is that everything I do takes at least twice as long as I feel it ought to – which, given my usual snails-pace standards, is a very long time indeed. I'm getting on with stuff, writing stuff, painting, making things, and I'm well used to working around involuntary hiatuses, but just now is a spell where things are taking so long that I begin to feel that I've forgotten how to do any of it. I know, this is not an unfamiliar subject for a blog post, and I don't know how many times I've written this post myself. But there's a reason why it is worth writing, because it does at least mean I'm writing something.

When things take too long, they lose their vitality. They get checked over and tweaked too many times. But time is also a cipher to confidence, and then you're tempted to check over and tweak, or leave it for now and wait for a time to check over and tweak, which means the whole thing will take twice as long. I can't do anything about life plus ill health, but I have to hold onto my confidence, especially when the life bit is giving me so much. I have to lay my brush down when I think a painting might be done, I have to share my writing sooner and press publish directly after the next sentence.

And no, I'm not apologising for not blogging more often, but I thank you all for your patience.

Audio Blog on "Terry Pratchett: Choosing to Die"

2011-06-17T12:30:00.004+01:00

cross-posted at Single Lens Reflections

Full Transcript:
Deborah: Hello there. Today we're going to talk about the BBC documentary, “Terry Pratchett: Choosing to Die” which was on on Monday night and is available to viewers in the UK on BBC iPlayer until next Monday night, that's the 20th June.

Stephen: The programme featured a number of different people suffering from different conditions, all of whom were either supporters of, or in the program to be helped to kill themselves. We are both somewhat ambiguous [sic.] when it comes to assisted suicide. That doesn't mean that we have any moral or ethical issues with suicide in general, certainly no religious problems with the idea. And we completely understand how severe illness can produce a situation in which you want to end your life as soon as possible rather than suffer any more than you possibly have to.

However, there were problems with the programme, which is difficult for me to say because I'm a huge fan of Terry Pratchett and his work. But there are many things to talk about and that's what we're here to do.

D: That having been said, I think we both have very serious concerns about assisted suicide and the way it is presented in the media, especially as far as the representation of disability is concerned. The idea that there are some lives which are less valuable than others, and that some lives are less liveable than others just because of a physical difference.

My problem with the assisted suicide debate is what appears to be an assumption that a physical disaster – a physical health disaster – has a special status, where if you become paralysed, if you have a degenerative condition, that's different from experiencing a major depression, becoming bankrupt, getting divorced, having some of your dreams destroyed in some way other than a physical illness. Physical illness and injury have a special status that means that people aren't expected to get over it, people aren't expected to find new ways of living within those limitations and it seems that our culture thinks that's a legiti...

S: That's not a degenerative condition, that's just how she is and I do not wish her to kill herself just because she can't say legitimate.

D: Legitimate. The problem is there does seem to be a special status of having a physical illness or a physical injury which is seen as a legitimate reason to kill yourself whereas all manner of personal disasters which lead people to suicidal ideation are not.

S: Well said. I think perhaps we should go through the characters we meet. Characters is perhaps the easiest way to see them because, over the course of the programme, we do see one of them die and hear from one person who also dies although we do not see their death. So it is not easy watching. It is not light-hearted evening viewing, so be warned if you're going to watch it.

First of all we saw Peter Smegly?

D: Smeadley.

S: Smeadley. Sorry, that's Red Dwarf for you. Peter Smeadley, whose family had got money through canning goods, who had Motor Neurone. He was not apparently hugely disabled by the Motor Neurone already. I think that's fair to say?

D: Um, not by our standards.

S: Not by our standards at least. He would struggle to get up but his struggling was on a level with our own at times and he was not obviously using many mobility aids, despite his family money which would have paid for a great deal of help which isn't necessarily available to everyone, although it should be. He is the man who we see die and we'll talk about him more in in a minute.

We also meet a chap called Andrew, who had MS. He was not a member of a canning empire and he seemed, at least, to live quite a quiet and lonely existence.

D: I think the worrying point about Andrew was he was crawling about the house, he said he got out of bed by falling out of bed and crawling from room to room.

S: On a bad day.

D: On a bad day. But even so. His accommodation wasn't really suitable for him, he really should have been using a powerchair, I would say. But whether that was simply unavailable to him, or not, I mean the fact is he didn't have the adaptions which would have made his life a lot more liveable – or at least one would presume it would do. That's perhaps not a fair thing to say but

S: I think it's fair to say because we all need the correct environment in which to live our lives properly.

D: Yeah, but he might have still been completely and utterly miserable

S: Yes indeed.

D: But you'd think that would, that should have been tried first. And it should be the case that he'd have the support to try that first but not knowing his personal circumstances I don't know whether that stuff had been

S: It's difficult to say, as is much as what we'll say during this podcast. We must say this is our own opinion of seeing what must have been quite a heavily edited collection of interviews.

D: Yes and it was – the programme was certainly edited for pathos. Lots of soaring music. We saw a lot of Peter, the chap we saw dying eventually, struggling to get up and struggling to sit down again and a lot of camera time on the point that he had a physical impairment.

S: I must say it reminded me a lot of the Disability Living Allowance forms that we've just got to, which are, if anything, a good starter in your quest towards suicide. Where they ask you do you have problems getting into and out of chairs, or they used to, I dont think they have that question now, but it was a bit like watching our answer in the form, and the answer to the form was that rather than being given benefit or using money to enable to live your life with joy and accomplishment and so on, you can just kill yourself.

D: I think it's a subjective matter. I think that there are real differences, things that aren't spoken about in the public domain because of the negative representation of disability, because of the idea that if you've got physical limitations your life must be pretty rubbish. I think there are real differences with conditions, with the things that can be utterly demoralising and soul destroying and the things that aren't. And of course that varies a great deal from person to person. But in many ways I had far more sympathy for, no sympathy is the wrong...I had sympathy for everyone, but I had far more sympathy with the desire on the part of Terry Pratchett not to go on throughout the entirety of Altziemers, because having experienced cognitive dysfunction and confusion and disorientation and memory problems too, that stuff is far worse than most physical pain, obviously physical pain after a while, but fact is I dont think I've ever had physical pain where there wasn't a drug that couldn't touch it even if I didn't have access to it at the time. But that stuff is far worse than physical pain and far worse than physical limitation. And of course with a condition like Motor Neurone Disease which Peter had, there is that possibility that he would lose some of his cognitive faculties. And I think that's much more distressing for the individual and his family and I can understand, in fact I think that is the one thing where if my illness became much worse again, that would be the one thing that I would have a lot of trouble adapting to.

S: I think at this point, rather than talking about Alzheimers, which we'll leave for a minute, because there was another person as well as Terry Pratchett who was – or who had killed himself, having suffered from Alzheimers. There was another man who had Motor Neurone, who I think was the most interesting point of view on the entire programme. He was called Mick, he was an ex-London cabbie.

D: Who demonstrated the fact.

S: Who demonstrated the fact and did this properly by asking for payment at the end. He was a really charming chap. And he had a good sense of humour and despite being much more disabled than the Motor Neurone than Peter, he was, I would guess, pretty much confined to his electric wheelchair.

D: He was in a hospice.

S: Yeah. He had moved to a hospice and Terry Pratchett said that, you know, there are other ways of dealing with things and some people move to hospices to die. I think he was wrong. I think that Mick had moved there so that he could enable his living and his enjoyment of life for longer. And he really showed this off. He was bubbly and expressive. And yet he was pro-assisted suicide. Which I almost wasn't expected. But his was a very rounded opinion. He wanted to live his life as long as he possibly could and as well as he possibly could. And he was using every resource he possibly could in order to achieve this. And I found that admirable, in a programme like that.

D: Yeah, it's quite funny because – well, not funny, funny peculiar. It wasn't funny.

S: Ho ho!

D: There really wasn't very much funny about this programme at all. What was funny peculiar was that after Peter has taken his life, Terry Pratchett says that he's the bravest man he's ever met. And in many ways I think Mick may have been the bravest man he'd ever met. And bravery is a very difficult issue.

S: Especially with disability. Especially in the current political climate.

D: And I certainly wouldn't say that Peter had taken a cowardly path. I don't think that is an useful concept either. But I think Mick had chosen to live and I think choosing to live can take an awful lot of courage. And considering that he was in favour of assisted suicide and it was something he had thought about himself and he had been in touch with Dignitas himself, but then he chose the other way, I think that was a brave thing to do.

S: Another incorrect statement, I felt, given by Terry Pratchett was that Peter's death was a happy thing because he got to decide when he died, etc. But I disagree and I think that Deborah disagrees as well.

D: Yes, I do.

S: That the death were not happy. There was a death described that we'll get to eventually which was certainly beautiful but it wasn't happy. None of the deaths were happy. Happy would have been achieving joy and all manner of other things. These were releases from fear, sometimes a release from pain, certainly a relief, but they weren't unhappy. They were just an end.

D: Two of the things I find disturbing about the assisted suicide debate in general is firstly the idea that there's nothing like that going on, that it's a common experience to suffer in agony unnecessary until you naturally die, when in fact I think probably most cancer patients in the UK die of diamorphine overdoses – I think that's a very common thing, that pain relief kills people, because we do prioritise people's comfort over people's lives at the end. But also the idea that “the happy death”, the death that people “choose to have” - that anybody can really choose a particular kind of death. I don't think that a millionaire would have chosen to die on an industrial estate on the outskirts of Zurich. I don't think that was the death they would have truly chosen. Both the idea that suffering is commonplace and we do keep lots of people – I mean, there are people who are alive after they want to be, but there are very few. And also, the idea that any death can be what someone has chosen and everything is exactly how they would like. I think there are better deaths and there are worse deaths, but none of them are happy and none of them, we have an awful lot of control over. Even when people take there own lives, I think, you've still got a very limited amount of control and if we did have assisted suicide in this country, it would still have to be terribly controlled. Terry Pratchett said he'd like to die in the sunshine, which is a lovely romantic idea, but if we had assisted suicide in this country

S: It would be in the hospital.

D: It would presumably be in a hospital – you couldn't just do it on a hillside. Although if we had -

S: Unless he slipped.

D: Slipped? I'm not

S: He's getting a bit frail, top of a hillside, slips.

D: But that's not

S: Assisted suicide because someone gave him a nudge.

D: This a very dark and sober subject.

S: Indeed. I think perhaps it's time to finally mention Hugo Klaus, who was the other man with Alzheimers. We never got to meet him, sadly. He was a Belgian author and we only got to meet his widow. He had died at – I think it was at the Dignitas Clinic?

D: No, because

S: Was it not? No because it was legal

D: It was in hospital in Belgium.

S: Yeah, because it's legal in Belgium for people to be helped to die but not for foreigners to be killed, to – sorry, for them to be assisted in their suicide. This is a problem I have because I don't see a great difference between the two. I know that many people would see a difference between the two and I fully accept that. Anyway, he had Alzheimers and his death was the rather beautiful one where he sang a song, having drunk a glass of rather good champagne and smoked a cigarette. He sang a song with his wife while he slowly died, and died singing. Which, you know, as authorial deaths go, is quite an impressive one. And this, I feel, is where the big problem comes in. That Alzheimers and other forms of dementia are really difficult. They are the things that scare us, the idea of cognitive loss, or losing oneself, of being lost in a nightmare. I certainly saw my grandmother destroyed by dementia and there wasn't anything happy about her death but it certainly was a relief. I was somewhat horrified to realise that Terry Pratchett would have to arrange his death with Dignitas, prior to becoming completely destroyed by the Alzheimer's, because he has to have enough cognitive function to say, “I want to die, I want to die, I want to die” - because they keep on asking you. I find it hard to imagine, having this option available to – even to people, what was the term that they were - ?

D: About twenty, I think they said 21% of the people who die at Dignitas don't have a serious physical disease, or perhaps not a disease at all, but they have become “weary of life”

S: “Weary of life”. Isn't that beautiful and happy? So I don't see how people who are “weary of life” can go to a place and be helped tyo kill themselves and somebody who has previously said, when I get to a certain point in my life, I want to die, that they cannot be helped. And I suppose this then becomes an act of killing as opposed to an act of suicide because someone has to actually inject them with a drug, rather than handing them a drink, if they can't then swallow it.

I find this really difficult and I think it's a big flaw in the process. And actually it makes me quite upset because I don't think people should be in that situation. As much as I find the idea of a legalised assisted suicide in the UK quite troubling, in many ways, and I would rather see greater care, it's Alzheimer's and Dementia where I see a real need for assisted suicide and yet it's there where there isn't, apparently, the option.

D: I can understand that because it's all about consent. If somebody's gone beyond the point where they're able to give informed consent, then they shouldn't be harmed. That makes utter sense to me because you've still got a person there even if they're not able to communicate. But the issue of consent brings us round to mental capacity and mental illness. Because assisted suicide in the UK is such a huge leap from where we are now. It's only decades since attempting suicide was a criminal offence and currently assisting suicide is a criminal offence, and if you see someone who is trying to kill themselves, you're allowed to assault them, you're allowed to break all manner of rules, just as if they were committing violence against another person, in order to stop them and prevent harm to them.

Meanwhile, if you repeatedly attempt to commit suicide, you're likely to get sectioned and have all your freedoms taken away from you. We take this very seriously. We assume that people who harm themselves are not in their right mind when they do so, and we tend to see this as a massively negative thing.

I think that it's extremely difficult to define when somebody could be in their right mind, when facing death. There might be people who have chronic mental ill health who are not able to manage in the way that all the people I know with chronic mental health – chronic mental ill health even, chronic mental health? There are people who may have been unhappy all their lives and may have made several conscientious attempts to kill themselves, who, on their final success, everyone who knows them may feel that they have got what they wanted, and nothing could have been done for them, and life could not have been improved for them. But for the vast majority of people with depression – whether they've got a chronic depression or whether they've got a reactive depression because life has gone wrong for them in some way – we have a cultural assumption that there is help and there is hope and it's about changing their life and changing their mind as opposed to simply opting out.

One of the most disturbing, well actually in my opinion, the most disturbing case of assisted suicide by a British person was a few years ago, a 23 year old lad, who was quadraplegic, took his own life at Dignitas in Switzerland, with the help of his parents, only 18 months after he had the initial accident that left him paralysed. And that's really scary for me. Lots of things go wrong for 23 year olds, and when you're that age, you do tend to take things in the worst possible way and you can feel like your life is over, because of the end of a relationship, because you started on one course of a career that suddenly you realise it's not going to work out the way you thought it would, because of financial problems – all kinds of things can go wrong for you. But given enough time, you sort of work it out. And certainly with illness and injury, 18 months is no time at all. The sort of peak of my feeling that my illness couldn't be lived with was about three years in, before the point where I thought, well it's not actually going to get any better and it could get a lot worse than this, then I really wanted out for a while. 18 months is no time at all.

And I think that's the scary thing, that whatever else might have gone wrong for that young man, any of those other things, people would have said, “Well, something will come up.” or “You will find another way of doing things.” But because it was something physical

S: And it sounds like it was a sporting family.

D: Yeah, I think so. I mean, this is one of the difficult things about the way that different impairments effect people. There's perhaps something especially tragic about Alzheimer's effecting a writer.

S: Hmm.

D: And when paralysis effects a sporty person, somebody who lives in their body a lot, that's perhaps worse than when paralysis effect someone whose intellectual. But even so, I struggle to see, but I feel that if we ever did put this in place, we would have to have some sort of system of defining how long and what options had been explored before people make that ultimate choice.

S: And who makes that decision? And who makes up the board that oversees who gets the chance to kill themselves? And who doesn't?

D: Yeah, I've always thought that perhaps some sort of tribunal that included a sort of pro-life disability activist, to sort of offer all the alternatives. Or an occupational therapist to sort of say “Well, you know, you feel you can't...”

S: I don't see how anyone with Motor Neurone who is in a better state than Mick, from the programme, could possibly kill themselves having seen what he achieves in his capacity in the hospice.

D: I mean, in fairness, I think one of the problems with assisted suicide and Switzerland being the only option for people in the UK, is that there's this issue of travelling and this issue of how far it gets along. Cause I mean, Motor Neurone Disease can go downhill quite quickly and people can reach the point where travelling becomes extremely difficult to do. And I think

S: And also the issue of cost.

D: Yeah. Well, yeah I know but that doesn't change when people do it.

S: Well, it changes whether they have the option to do it, which doesn't seem fair to me.

D: So you think it should be legal in the UK?

S: On the NHS. I don't know if it should be available on the NHS but I do have a problem with any service that is only available to someone who has the capacity to pay £10K for it.

D: Anyway, my point was before, about travelling, was that when people are forced to travel, they are forced to make a decision in advance of falling severely ill. And I do think that fear is such a big part of terminal illness. The fear that it's going to move beyond point. Last year I lived with friends, one of whom had emphysema and was heading – he died at Christmas in the end. But he was very frightened about what the end could be and in the end he had a very gently passing. But he could have effectively drowned to death and that could have happened quite slowly. So he longed to have some means of getting out if he could. Some days he wanted to just die because he was unhappy, because to be honest he was quite depressed. But I think, if he had had some means of getting out, it would have made him feel safer and more comfortable in facing his natural death.

I think it's Oregon in the US where you can effectively get a prescription for deadly drugs, and many of these prescriptions are filed but very few of them are actually taken, because once people have the means to get out, if they want to, they generally end up facing natural death. Because I think, as I said, with palliative care as it is, there are very few natural deaths which are these nightmare scenario of being locked in a body in agony for days or weeks or months, without being able to communicate with others, etc.

S: And I can't help but think, and it might just be the Yorkshireman in me thinking this, that if you've travelled all the way to Switzerland and have paid £10K, that when you're sat there, being offered a pair of drinks that are going to end you, you're not going to say, “Oh, on second thoughts, perhaps not today.”

D: Well yeah, this is a bit like the argument against prostitution, the idea that if you involve money, then consent isn't 100% pure any more. And the poorer you are, if you're spending £10K, you're going to go through with it. And of course, there's also the problem, one of the big arguments against assisted suicide is the fact that disabled people can become very costly, to the state and to their families, and in the case of elderly disabled people, they may feel like they're using up the inheritance they meant to pass on. And that becomes a big problem when you give people an out, because people in our culture are made to feel like burdens. I mean, especially in the political culture at the moment, we're really made to feel like Ballastexistenz.

S: And with that, I think we should leave it. I hope that wherever you are, and whatever you're doing and whatever you're feeling, that you're not wanting to die. And that listening to this has not made you any more eager to pop your clogs. So listen to us next time, we'll try to be a bit more cheery.

D: We should write, we should do some sort of podcast about the Joys of Life

S: Choose Life! Next time.

Looking After Yourself as Radical Political Activism

2011-06-07T12:42:00.002+01:00

In the last year or so, the world has turned out to be a much better place than I thought it was. This despite the fact that the political situation in the UK has begun to deteriorate sharply. In fact, just a year later and I would have been in a far worse position and may have struggled to escape my violent marriage – not merely in terms of financial insecurity, but in terms of whether I would have had the practical and legal help I needed. This frightens me.

With their decimation of the welfare state and public services, this government is implicitly repeating the messages of my abusive ex and everyone else who seeks to abuse and oppress others. My health doesn't really matter, my happiness doesn't really matter. My relationships with friends and family don't really matter. My dreams don't really matter.

And obviously, I have to do something about that. Two things. One thing speaks for itself. The other is rarely spoken about but is actually more important. It is the cornerstone of every struggle for equality and social justice. It is a necessary condition for making a difference.

Looking after yourself is radical political activism.

It's radical because this is a message you are unlikely to receive anywhere in the media or from culture. You may receive messages advocating material self-interest. You may receive messages advocating a healthy lifestyle, but very often these messages come with a dose of shame and angst for your inevitable failure to follow all available advice. If you watch television, read the news or step outside in a built-up area today, you will receive lots and lots of messages. None of them will tell you that you matter and you need to look after yourself. Many of them will suggest reasons why you don't really matter.

The only people likely to give you this message are your friends and family. They might not - they might not think it even needs saying. But even if they do, you may be inclined to think that they are over-invested, that they think you matter more than you actually do. But they don't. They're right. You matter at least as much as that.

Looking after yourself is an act of modesty.

No need to get big-headed about this business of mattering. Projects and movements are often bigger than the individuals within them, but the point about this is not that it doesn't matter if you get flattened – it means that if you step back, it carries on without you. If something matters, there are always other people around to step up and help out. Often there are other people around who won't step up until you step back. You have to be very careful if you ever get to think that you're the only person who can fulfil a certain mission. Sometimes, I suppose, somebody might be. I've certainly never have been, so I wouldn't know.

Looking after yourself is a necessary condition for looking after others.

Over the years, I have often pushed myself to achieve something – battled through an afternoon at the cost of a week or three in bed – and this has sometimes been worth it. But times I have run myself into the ground, got myself into terrific debt with the Spoon Gods, costing me a long-term deterioration in my health? It has never been worth it. Not only because I suffer too much, although that matters. But also because then I render myself less useful, and for periods of time, pretty much useless. If I wreck my already damaged health, I am certainly no use as an activist, but I'm also less useful as a friend to people who need me.

Looking after yourself is setting a good example to others.

Looking after yourself gives permission to those around you to do likewise. Self-sacrifice is not a personal virtue that one can claim for oneself without harming others. If you don't rest, it makes it jolly hard for people around you to rest – and they may need it even more than you do.

Looking after yourself is an act of feminism, disability equality, queer pride etc..

As women, we're supposed to put most of our energy into looking after others and what is left into keeping ourselves attractive. As men, we're supposed to be putting individual success before everything. As disabled people, we're supposed to be constantly triumphing over adversity and as such, we're supposed to keep pushing, no matter what, to avoid being overcome by the tragedy of our existence. As queer people, we're supposed to be proving that we have wonderful perfect lives and relationships and nothing than needs working out or working on. I'm too white to talk about the demands placed on other ethnic identities which make it harder to look after oneself but I know they exist.

And yet...

Looking after yourself keeps identity politics in its place.

The goal of egalitarianism is a world where there are far fewer contexts in which we'd be forced think about our gender, sexuality, disability, the colour of our skin and so forth. In a world where this stuff comes up as often as it does, we need to spend as much time as possible just being people. I don't mean we should ever avoid the subject (it won't avoid us), but that we should spend time with ourselves and with people who would use words to describe us that have nothing to do with social and political constructs.

Looking after yourself is an act of courage.

Two of the most frightening social interactions are saying “No” and asking for help, despite the fact that other people usually respond very well to both. It's not all that courageous to carry on regardless and fall into a hole – in fact, self-neglect is often the path of least resistance, involving a downward trajectory and all.

Looking after yourself defies your enemies.

Very few people or organisations are actually invested in our suffering, but there are certainly those – including our current government – who are invested in our powerlessness. Political injustice is so often a matter of attrition rather than victimisation; things are made to be difficult not so our lives fall apart (that's collateral damage), but things are made difficult so that we give up. And it is entirely understandable when people do.

It is radical political activism that we take steps to keep ourselves in a position where we can cope with our own battles, have as good lives as we possibly can and hopefully have some energy left over for contributing to the bigger picture. We need to work on living the lives we want, even when we're still fighting for the right to live them.

Catfish, Lies & On-line Identities

2011-05-24T10:11:00.005+01:00

cross-posted at Single Lens Reflections

Full Transcript:

D: Hello. We've decided to do an audio-review of the film, Catfish, in order to test out Stephen's new microphone. The film Catfish is one where there's no way to review it without major spoilers, so if you want to watch the film and enjoy it in its completeness, you need to stop listening now.

S: Quite right. And thank you very much for the microphone. It's very beautiful, thank you.

D: You're welcome. Would you like to tell the listeners – I was about to say “viewers” - would you like to tell the listeners what the film is about?

S: I don't think the microphone is that good.

D: No.

S: The film is about – it's a documentary following a photographer, who has an office in New York, who strikes up an on-line friendship with “Abby” who is a seven year old girl from an American state beginning with M.

D: Michigan.

S: Michigan. I keep on forgetting this. We've had a trial run and I came up with Massachusetts and

D: Demure

S: Des Moines. Even I know that there isn't an American state called “Demure”

D: There isn't an American state called “Des Moines”.

S: Is there not? Is that a city?

D: I don't know but I know there aren't any

S: I so want to Google it and I can't really do an “Excuse me a minute while I get out my phone”

Right so, Michigan.

D: It was Michigan.

S: Michigan. And he was in New York and apparently there is quite a large space between those two places.

D: Cause it's in America.

S: Cause it's in America and America is big.

D: It's all spaced out.

S: Is it? News to me. Okay. So they strike up a friendship via Facebook. She paints his photos that are published in various magazines.

D: Makes paintings from his photos.

S: Yep, paintings of his photos. And he then becomes friendly with her mother Angela and her sister Megan and in fact the relationship with Megan becomes very romantically-inclined.

D: Yes, I think he thinks he's in love with her.

S: Yeah. And the thing is filmed by his two friends who both use his office space. But the documentary starts out as really looking at his relationship with this family. They call it the Facebook family because he “friends” them all on Facebook. And we see all of these lives meshed together. A brother who worries about how he's treating Megan. And it's quite in depth and detailed. But the action takes a bit of a tumble when he realises that a song that Megan claims to have produced within about twenty minutes or something - he requests a song

D: Yeah, he requests a cover of a song and suddenly

S: Tennessee Stud, I believe it was.

D: Yes it was.

S: Yeah, see I can remember that. And Tennessee is somewhere in America.

D: And uh, yeah. No it wasn't, it's the name of a playright, Tennessee Williams.

S: Oh I see.

D: I think perhaps they named a place after Tennessee Williams.

S: It makes sense.

D: It's a bit like Denver and John Denver.

S: And Denzel Washington.

D: Yeah, I don't know, I think perhaps Washington was there before Denzel Washington.

S: Okay. So, this song. He receives this song as an MP3 or whatever. And I can't remember why but they go looking for other versions and they actually find the song on Youtube.

D: I think it was a different song. They were getting lots of songs and it was a different song that they searched for but they realised that the recording sounded exactly the same as a cover on Youtube.

S: So they'd recorded the audio stream from Youtube and then sent it on to him. So initially he thinks, “Oh no, this love of my life is a plagiarist.” But the story unravels more and he ends up with his friends – because they're relatively near to where these people live – going and dropping in on them and so the secret unravels.

Now we were, prior to this point, or certainly you were convinced that this was a “Mockumentary”.

D: Not a Mockumentary! I thought it was a “Blair Witch” style fake

S: A spooky unsettling horror type thing.

D: Or “Spinal Tap”. I thought it was a drama pretending to be a documentary. And it is beautifully done.

S: Yes it is beautifully done. The filming, some of the scenes

D: The use of technology, the use of Google Earth when they're moving about

S: And Street View to kind of focus in on these places

D: Really nice use of tech, which is still quite rare in films, to use on-line technology that looks like the on-line technology that we all use. But it just, it is real. It really was real. I think we realise this, without a doubt, when we finally meet the character of Angela.

S: Or the person who is really Angela.

D: The person is really Angela, who doesn't look anything like the photographs we've seen. And turns out to be responsible for all these identities.

S: Twelve separate accounts on Facebook.

D: Which include the daughter. She does have a daughter, but the daughter doesn't resemble – well she physically resembles but she isn't a painter, she isn't this bright spark that has been having this e-mail correspondence with the photographer. And the older daughter, who the photographer believes himself in love with, as well as a brother, some cousins, some friends. And she's fabricated the whole thing. And we were talking about the way that that's changed. You know, having been on-line since the late 90s, I think we feel a lot safer with the people we meet on-line now because we are so interconnected.

S: Yeah, the evolution of social media has created a smaller degree of separation. Just the other day on Twitter, someone I follow who is involved in electric vehicles ended up retweeting from someone I am aware of through disability activism so the reality of both people becomes more solid as they're both linked together.

D: And the people, certainly the people I know. I mean, I don't use Facebook but the people I know through blogging and Twitter and all of that, there are sort of strange connections between people. But you're not having to appraise one person who could be fooling you, if they're fooling you, they're fooling a lot of people. Because they're interconnected. But of course this woman had created an entire network of people, all of which were backing up this narrative. I mean, she was a frustrated novelist really, she didn't know that that's what she should have been doing with her time. But she was managing twelve Facebook accounts and presumably Twitter accounts and things, as well as having two mobile phones so she could pick up the phone as herself and she could pick up the phone as her imaginary daughter. And the whole thing, all these characters and interactions and everything they were doing amongst themselves were an entire fabrication.

S: And she had been the person producing these paintings. Really out of a love for this

D: She was very much in love with the photographer.

S: He was – I think with his interest in dance, which she shared and

D: They did have a lot in common.

S: They did have a lot in common and they seemed to get on very well.

D: Except for the fact that she had obviously deceived him in a terrific way. She'd made him fall in love with someone who didn't exist. And she was terrifically in love with him.

S: Whilst being a married housewife. But we begin to understand her situation as we begin to her house in – what I would say was a very isolated community?

D: It's difficult to judge.

S: It's difficult to judge, but. And looking after, it would appear looking after full time, two young men who were both physically and mentally disabled. And she seemed to have a very empty life? Is that fair?

D: I think she had a very frustrated life. She obviously had a lot of time on her hands. And I think, compared to the life of a photographer working in New York, going to all kinds of Arts things, I think she felt very frustrated. She didn't have the access to that kind of art. She had a very frustrating life.

S: And this had driven her to trying to create something better, something richer. Which I think is a symptom of society that reduces a degree of social care which is necessary. People need the connections she was creating. People need rich lives.

D: She was one of these characters that you do know – I think, when she appeared, you knew straight away that there was no doubt that this was a genuine documentary because she was not a character you normally get in films. She was a compulsive liar really, but she wasn't a crafty criminal mastermind type. She sort of – she was a very sympathetic character, you felt quite sorry for her even though you could tell that she was

S: And even the break down of her life on film was heart-breaking.

D: It was.

S: Because she's confronted very gently. They did do very well. They weren't angry with her.

D: I think they were a bit angry but they were keeping it under control.

S: They weren't vindictive, sorry.

D: No, they weren't malicious or... They could have humiliated her or just bamboozled her with what she'd done.

S: Yeah. But the truth is relatively gently brought to light. And she's given the opportunity to almost come clean. She doesn't quite get there, she does produce quite a few more lies.

D: One of the things that really shoke – was very familiar was um... She had very long hair which she was very proud of. And she'd sent them a photograph that was supposed to be her and the only similarity between that and her was that the woman in the photograph had very long hair. She was complimented on this and she said, “Well, I won't have it for long because I'm on chemotherapy.” Which really kind of struck a chord because, of all the sort of stories that you hear of romances that turn out to be other than they are, on-line, cancer does seem to be a recurring theme.

S: And it also does stop any further conversation because it is the topic to end all topics.

D: Yeah. In the late 90s, the very first one I came across was a friend, a sort-of friend who had this girlfriend who was supposedly in hospital dying of cancer, although she had internet access, which seems unlikely given the time. And she had a PO Box address which seemed a bit suspect. And it seemed unbelievable then to everybody. Most of us hadn't been on-line very long and we just couldn't see how someone could get sucked in like that. But the guy felt himself in love.

And then a couple of years later there was another friend who was exactly the same – well not exactly the same thing happened. But again there was this guy who had seemed to have had a very tragic life and then he had cancer and there wasn't much time and so the whole relationship was very intense. And of course people do have cancer and people do have very intense relationships at the end of their lives but it does sort of, it is a bit too familiar, isn't it?

S: So this was the film. It was quite shocking. We were both – we chose it because it would be – we had a choice between this and Titus Andronicus and I think we went with the lighter option.

D: I still think it was probably the lighter option than Titus Andronicus.

S: Well you say that. Yeah perhaps okay. But we were both quite shocked.

D: Could we do like a Facebook version of Titus Andronicus?

S: Um, well Livinia does have her hands cut off which would limit her options for, anyway. So we were both quite shocked by the end of the film and as well as wanting to test the microphone, we wanted to talk a bit about it because it moved us.

D: Yes, it was very moving. And we talked about, I mean we've both been on-line since our... I don't know, how old were you?

S: I was a teenager still.

D: Well, I was a teenager still. I was going to say late teens and I thought perhaps it was your mid teens.

S: It may have well been mid-teens.

D: When you were young and naïve.

S: And I was called “The Very Cowardly Lion”.

D: That's really – the very cowardly lion?

S: The very cowardly lion. I know, it's really sad isn't it? But anyway.

D: [pause] Yes. Um.

S: That's a bit of a stopper, isn't it? Sorry.

D: That's a bit of a stopper.

S: I wasn't. I was just called Stephen. That was what my username was, it wasn't the Very Cowardly Lion. And I didn't go onto very early chatrooms and not say much apart from “Hello, I'm the Very Cowardly Lion.”

D: Yeah. I can't remember an awful lot of my old usernames and things.

S: That's probably for the best, I now feel very embarrassed. In fact I may cut this bit.

D: I don't think you should. Because people will want to Google it to see if there's any evidence of you.

S: I bet there isn't. That was in the days of Netscape.

D: Wow. So were you ever tempted to be someone you weren't?

S: Well I almost signed up for Second Life, after a friend of mine joined. But I think there's a desire often with, especially people who are ill and could be – aren't very satisfied with there lives, to try and create a new, more fulfilling existence. And the internet's a wonderful tool for this, because you don't have to show you're physical form. You can build a physical form that works with your idea of what you want to be.

D: Amanda Baggs, who blogs at Ballastexistenz. She is non-verbal autistic and she is a wheelchair-user and she's talked about using (bless you) using Second Life and that experience being completely different, because she is non-verbal, to be able to talk and interact and not be a wheelchair-user and her whole experience of life is completely different.

S: And it allows an extra dimension to life.

D: I don't think that is on any level pretending to be other than you are. I mean, Second Life, it is to do with a version of yourself, I don't think it's even an idealised version of yourself.

S: It depends on the person.

D: Yeah. It's a bit like in the Matrix when he incorrectly says, I think he says, “It's a mental picture of your digital self” when he really means – it's one of those many points in the Matrix when he gets his words wrong.

S: I did have a Yahoo chat account with several different identities. And I used them for times when I didn't want to be contacted.

D: I think organised crime is another issue altogether.

S: Yeah, back in the days of the Yahoo Mob, yeah. No, that was when I wanted to. When I was unable to socialise and yet wanted to be around some form of people.

D: Like in a petri dish.

S: Yeah, when I used to experiment on these poor tormented internet souls. I used to a put on a disguise to just sit quietly. But I didn't use that to become someone else. I just had one that was a Latin term and one that was actually a couple of words from a Portishead lyric, both of whom allowed me to sit quietly in a room and not be bothered.

D: Was that “Machine Gun”?
S: Um, no. It was “slave to sensation”. Which, if you've ever been to Yahoo chat, makes you sound like, um...

D: I think we know what that makes you sound like.

S: And so you never ever get bothered, which is wonderful.

D: I'm quite surprised you don't get bothered. I'm quite surprised people weren't interested in what particular sensations you were slave to.

S: Anyway, that was a long time ago. And uh, sorry, I have forgotten where I was.

D: I've pretended to be a man on-line.

S: Have you?

D: Yes, I put on a deep voice like this. [convincing masculine voice] Hello. Hello darling. [resumes feminine voice] That's my

S: It's very convincing! I can almost hear the chest hair.

D: But I've not actually

S: Just a warning to anyone who hasn't watched the film and yet is still listening to this, in which case shame on you. You do see an awful lot of chest hair. He has, he has got an awful lot and you know, in this society where chest hair is banished from the front of magazines, it is quite shocking.

D: Okay. I have pretended to be a man on-line but not actually, to be honest I didn't really try hard. I just let people refer to me in the masculine and call me mister and so on, and not challenge them. Especially when I was younger, I think I very much felt that people – especially on political matters – I felt people took me more seriously if they thought I was a man. I wouldn't do that now.

S: I'm glad.

D: Because I think the sort – I mean it's an implicit bias, so it's not actually people who are horrendously sexist, but at the same time I think it's better that I might be taken a little less seriously but that people see that my point of view is that of a woman.

S: Yes.

D: A lady. I think it's particularly interesting for people who

S: have some sort of internet existence.

D: Yeah and also know people who are – I have know people who are – I mean we've obviously both been isolated at different times. But people who are isolated who turn to online communities to resolve isolation and there's nothing unhealthy about that in itself. But I think it sort of demonstrates where it can go.

S: The power of honesty. The importance of honesty. And the inevitability of lies.

D: Because you meet people and you don't believe who they are. I mean you meet people in real life and you don't buy, you know, there are lots of people who are full of...

S: Yeah.

D: We need a word that isn't a swearword to describe...

S: I do have that Bleep App on my phone. But I'd have to go and get my phone.

D: Yeah. Okay, how about you go “Beep” and I say it? There are people who are full of b....

S: [silence]

D: You've got to beep! There are people who are full of b...

S: I think you're all very glad I didn't beep, aren't you? Because that was far more funny as it was. I think they get the point.

D: There are people who are full of [beep]. Can we beep that afterwards?

S: There are indeed. There are people who lie, and we do have to be careful. But we also have to be caring because often people lie for a reason, a reason that is... well no, often don't, some of them are just idiots.

D: But lots of people do tell lies for a reason. Unfortunately though, they do tend to carry on lying, in experience. I think this is the thing. I think they get found out and, because it's a defence mechanism and as such it is very difficult to help people who tell lots of fibs.

S: So I think that's just about it.

D: Yes, I think it is.

S: So thank you for listening.

D: Yes, thank you. I hope we haven't wasted too much of your day.

S: And if we have, tough luck.

D: Yeah, you should have spent it on Facebook. [phone noise] Oops! Sorry.

S: And with that beep of modern technology, we bid you Adieu.

D: Goodbye.

Abstinence, Victim-Blaming & Female Empowerment

2011-05-19T17:16:00.007+01:00

So if anyone had any doubts how messed up we are about sexual violence, this was the week to learn otherwise.

Earlier this month, a bill passed through the preliminary stages of parliamentary process to teach abstinence to 13-16 year old girls in UK schools. The bill is unlikely to become law as it was proposed by Nadine “70% Fiction” Dorries who has throw a lot of issues around porn in newsagents, sexy children's clothes and all sorts into the debate about Sex Education. Then on Monday, she gave an interview on daytime TV in which she said

“...one of the reasons for [the push for abstinence] is that some of the evidence that I’ve heard is that if a stronger just say no message was given to children in school that there might be an impact on sex abuse. Because a lot of girls, when sex abuse takes place, don’t realise until later that that was a wrong thing to do. [...] Society is so over-sexualised that I don’t think people realise that if we did empower this message into girls, imbued this message in schools, we’d probably have less sex abuse.”

which didn't so much take the biscuit, as gobble a whole packet of ginger nuts. And a box of crackers. And half a dozen custard-creams.

Much of what needs to be said about this was covered by last Monday's post about Slutwalk, except before Monday, Dorries wasn't talking explicitly about rape - although the implication of her proposal to teach abstinence to girls only is that girls are gatekeepers and boys are beasts and so it is up to girls to take responsibility for everything.

Some bloggers have written about their experiences of childhood sexual abuse and how very deeply offensive – and damaging – such comments are. To have a serving politician suggest that there was something these children could have done which they failed to do, to throw discussion of sexual abuse in with girly magazines and masturbation is utterly perverse. This especially in the light of recent major child rape scandals like say, within the Catholic Church, where children undoubtedly talk of nothing but putting condoms on bananas.

It is difficult not to get very very angry with this individual. But I'm sure she didn't really think about what she was saying – she's thrown in so many issues in with her crusade against our over-sexed society that she's probably lost track (I know I have). She also has a history of tackling highly emotive subjects without research and she will probably issue a statement along the lines that what she says in interviews is 70% nonsense (fiction suggests at least a modicum of creative process).

Instead of getting angry (or more angry than I am), I wanted to talk a little about empowerment.

When it comes to child abuse, the single most effective way of protecting any given child is by instilling him or her with confidence and trust in other people. This isn't to say that confident and trusting children will never be harmed, but they are difficult to manipulate and silence and are thus very unattractive to abusers. The same goes for adults. One of the great tragedies for abused children is that they are much more likely to be abused as adults. Similarly, once a woman has experienced rape, she becomes statistically more likely to be raped again. This isn't because abused people take undue risks, but because these people are vulnerable, their self-worth and trust in others is damaged, and such vulnerability is very attractive to abusive people.

Cultural anxiety around sexual behaviour – including sexual abuse – can be damaging to the children it seeks to protect. And this is where a cultural obsession with sex is a problem – but Dorries is part of that problem. Attitudes like hers makes sex into a big bad shameful thing. When you grow up understanding sex to be dark and shameful, it is unsurprising when you have sexual experiences which make you feel unhappy and ashamed. The message that girls are corrupted little temptresses for whom sexual expression is dangerous is a very useful one for abusers. This is one of several reasons why abuse carried on for so long in the Catholic Church; if sex is horrible sinful thing, then children can be made to feel guilty and thus silent and co-operative about anything sexual that happens to them, even when it was utterly against their will.*

Our culture has messed up with this stuff too. The level of anxiety around paedophilia, the amount of scrutiny levelled at adults – especially men – who work with children, as well as things like the “no touch rules” which discourage supervising adults to physically comfort children might not be doing any good. Children who have good relationships with a variety of adults and experience appropriate touch from people other than their parents are going to be quicker to identify relationships and behaviour that don't fit. There's anxiety about a lack of male role models for boys, but I think they are just as important for girls – girls who have good relationships with men growing up will better know what men are like (i.e. they vary a great deal and anyone who mistreats you and excuses himself on the grounds of gender is a problem).

But when it comes to those things that girls do have control over, we need to teach girls that there is much more to them than sex. To use an old feminist concept, Dorries condemns woman to being the Sex Class every bit as much as the padded-bikinis and the sexualised images of women we see everywhere. A girl can either have sex or abstain from sex, and what sort of girl she is, what sort of life she has, depends on that decision. Sex is all about girls and girls are all about sex.

The single greatest thing we can do to help girls and women avoid making bad choices is to empower them in every aspect of their lives. When I was a teenager, the principle difference between those female friends of mine who became sexually active early on and took risks (the two did seem to go together) and those who waited longer and were then very careful was how they saw themselves – it had nothing to do with their knowledge of or interest in or moral ideas about sex.

Some of my friends had ambitions, hobbies and a lot of things going on as well. It wasn't that they were being kept busy or that they were any less hormonal and horny, but the way they saw themselves meant that boys might be lovers and some of these relationships were serious, but none were all-consuming and having a child was utterly unthinkable that side of twenty-five. For some of my friends, boyfriends and the soap opera style intrigues of teenage sexual shenanigans were all that was going on. One such friend said, aged fifteen, “Of course I don't want to get pregnant, but if it happens, it happens.” Poor lass needed something to happen.

Another difference between these girls? Massive social and socio-economic privilege on the part of that first group of girls. Not intelligence or temperament, but big difference in education and thus life prospects. But that's a rather trickier political matter than “Just say no”.

* Obviously part of that scandal was the great number of children and their families who weren't silent but were ignored anyway, but my point still stands. I should also add that I realise that very many Catholics think sex is a wonderful heaven-sent gift.

Slutwalk, Victim-Blaming & The Demonisation of Straight Men

2011-05-16T16:09:00.007+01:00

I have a few reservations about Slutwalk, but not nearly so many about the media coverage. The project has inadvertently provided newspapers with an opportunity to publish pictures of pretty young barely-dressed white women before opening on-line “debate” about whether or not such women are asking for it. Most of the participants, like the cop who originally warned women not to dress “like sluts” take the view that the compulsion to rape is a natural part of male heterosexuality and it is up to women to avoid rape by removing the temptation. Recurring analogies seem to be all about car theft; sometimes a sluttily-dressed woman is a car left with the keys in the lock, sometimes she's a shiny new cars versus an old rusty one. And of course, there are plenty of comments about how the women photographed aren't up to standard and thus in no danger of rape anyway.

But of course, the temptation to rape has almost nothing to do with sexual attraction. Because, guess what? Most men who are sexually attracted to women are not rapists. Most straight and bisexual men are capable of experiencing an infinite amount of lust and longing without turning to violence. It's not that rape doesn't have anything to do with sex – I think a lot of the solutions to rape are about female sexual empowerment. But the compulsion to rape is not a sexual one.

To say that rape is mostly about power is not just an abstract feminist analysis. We know this to be the case because sometimes straight men rape other men as a punishment or assertion of power; the rape of male prisoners of war is commonplace and the men who rape men in prisons are frequently heterosexual on the outside. We also know this because those women most vulnerable to rape are not those who are considered most sexually attractive – for example, disabled women are more likely to be raped than non-disabled women, despite our lack of conventional attractiveness.

Meanwhile, men who admit to rape (in crafty studies where they phrase questions around physical aggression, sex and consent, so not to actually use the word rape) are not generally sexually-frustrated, but typically men who have a lot of sex with a lot of people. The number of famous sportsmen convicted of rape demonstrates this point very clearly; it is not that these wealthy, famous, often physically attractive young men have any trouble getting consenting sexual partners, they just get nasty when they find that they can't do whatever they like to whomever they like. This comes from entitlement, arrogance and an utter contempt for women. And of course, if rape was matter of lust, then there wouldn't be such variation in rape statistics between cultures. There are entirely non-sexual reasons why in the US, a woman is one and a half times more likely to experience rape than in the UK.

Rapists use sex as an excuse and the rest of us often prefer a narrative of sexual provocation and frustration because it somehow makes rape less horrific than it is – it puts rape on a spectrum of regrettable sexual behaviours and indiscretions. Even rape victims can fall foul of this. At the height of the Julian Assange scandal, I read a blogger writing in Assange's defence, describe her own experience of being physically forced into sex despite objections and physical resistance as “just something that happens between men and women, which is sad, but it's not a crime.”* Which I found very sad indeed.

We also know that women are statistically less vulnerable to rape alone on a street or around strangers than they are indoors with a date, a male friend, boyfriend or husband. Thus, according to the numbers, a woman in a short skirt and high heels walking alone down a dark alley is not creating nearly such a good opportunity to a potential rapist as a woman in baggy jeans and a sweatshirt sitting at home with her boyfriend. The scantily-clad woman on the street has places to run to, maybe people to call out to, probably a phone inches from her hand. And if she is attacked, then there's less confusion. It may even possible she has more chance of conviction than the girlfriend of a rapist, I don't know.

The idea of masculine heterosexuality as something out of control, compelling men to take every opportunity for sexual contact with women, lets straight men off many social hooks. There is still a double standard about sexual morality, whereby girls and women are expected to take responsibility for sexual decisions, contraception and so on, whilst the idea that boys will be boys is used to excuse almost anything, up to and including the rape of children by adult men. There's absolutely no doubt about the effect this has on women's lives, our sexual and mental health, our freedom of movement and expression and our relationships with men.

However these same ideas demonise the sexuality of straight and bisexual men. It removes the value of men's sexual choices, it diminishes any sense of their free will. It makes the sexual assault of a straight man by a woman impossible, since no real man would ever say no to anything. It places a great deal of pressure on boys and men to be sexually active whether they want to be or not, whether they want the available kinds of realtionships or not. It alienates men who are shy, romantic or uncertain about sex, let alone those have religious beliefs around chastity. It makes male celibacy into something deeply sinister. And of course, it makes male sexuality out to be inherently dangerous, leading to a culture of suspicion towards men who work around children and other vulnerable people.

It's not an accident that straight men perpetrate the vast majority of rapes, but it is not because being a straight man makes you bad. This is all about power. And it is up to straight men to take the power away from those within their ranks who use these excuses for violence.

Hannah has written a very good review of some of the more reasoned coverage and discussion around Slutwalk, the reclamation of language, whether it is a feminist movement and so on. I've read other good things written about it, but just now the only thing I can remember is the Germaine Greer piece in the Telegraph, which gave the rallying cry, "If they're to be liberated, women have to demand the right to be dirty. By declaring themselves sluts, they lay down the Cillit Bang and take up the instruments of pleasure."

*I paraphrase for anonymity.

News, Numbers and Nonsense

2011-05-09T16:58:00.001+01:00

Cross-posted at Where's the Benefit?

The news that mental health conditions are now the most common reason for somebody to be on incapacity benefits is only the latest in a great slew of statistics published lately about disability benefit which are being used to imply something far beyond their significance. Statistics only become news when they are seen to be interesting - usually when something is going dramatically up, or down.

In this case, the real story here is that the numbers of people with chronic back pain on Incapacity Benefit dropped by 50% between 1997 and 2007 - that's the newsworthy bit, that should be the headline. Not because it's good news, but because it indicates an actual change. And whilst the Occupational Therapists looking at the data couldn't see why they could be responsible for this change, I think it says positive things about workplace conditions - both that workers have been made less vulnerable to back injury and strain at work and after the introduction of DDA, workers with chronic back pain have rights to accommodation so many can carry on working. I'm sure there's also better advice from GPs, maybe other improvements in medical treatment too.

But no, the story is about mental illness, to imply that it is remarkable so many people should be incapacity benefit with mental illness. Only it's not very many at all.

One in four people in the UK will experience mental illness at some point in their lives. According to the article's statitistics (once we do some maths of our own) about one in two hundred and fifty of the country's population is currently incapacitated due to mental ill health.

The same sum is useful to apply to that obesity statistic published a few weeks back. The headline was that 80,000 people are on incapacity benefits because of alcoholism, drug addiction or obesity, but it was the smallest proportion of this group, people with obesity, that gained the attention. My Dad had heard the news and declared that 80,000 people incapacitated by obesity. The Mirror delighted in the imagery, “People who are too fat to work are biting a huge hole in the country’s finances, figures revealed yesterday.”

In fact, it was more like 1800 who were obese. Almost one in four of us is obese, but these figures mean that only one in thirty-five-thousand of us are actually incapacitated by obesity, making the “Loads of people are too fat to work” trope rather moot.

These statistics demonstrate that it is very rare for mental illness or obesity to lead to incapacity. Given that these conditions, along with chronic back pain (usually reported as “a bad back” in the press and usually in inverted commas), are common*, this should lead to empathy as opposed to dismissal.

I have had chronic back pain and mental illness and I have been obese. Had I not been chronically ill as it was, the back pain and mental illness would have lead to significant time off work but neither would have been bad enough for long enough to take me out of work. Despite that, my mental health experiences have been by far the worst experiences of my life, far worse than any level of pain I have experienced. My back pain was intensely painful, tremendously frustrating, very sensitive to emotional tension and presented a constant battle between the need for rest and the need for movement. So when I hear about people being incapacitated by mental ill health or “a bad back”, I have great sympathy – they have what I had but probably worse and definitely for much longer.

The obesity was only a problem to me because I had put on weight very quickly and felt very self-conscious about it, so goodness knows how much more severe a person's condition has to be before it stops them working. People who are incapacitated with obesity are significantly unwell. To carry that kind of weight in the first place, there must be an underlying physical or mental health problem - if someone actually eats their way to that size, they have an eating disorder as serious and dangerous as anorexia or bulimia.

But my sympathy is utterly irrelevant. The point is that someone has to experience a significant level of functional impairment in order to qualify for any disability benefits. Just because a condition is common doesn't mean that a minority of people don't get it very bad. Almost everyone has had the flu at some point in their lives, but that doesn't make it remarkable that a few thousand people who die of it each winter.

* Mental illness can of course be a hundred different things, including relatively rare conditions, but for these purposes all these mental ill health is lumped in together. I'm not going to go to great pains to put this right because the whole matter of diagnostic labels and incapacity is highly problematic and plays into the hierarchy of disability.

Live Long and Prosper

2011-05-04T11:32:00.005+01:00

(It's probably too late in the day to say "May the Fourth be With You")

Thank you so much for all your support with Blogging Against Disablism Day!

Numbers-wise, I think it was a relatively quiet year. The numbers go up and down and so far I've not seen an obvious pattern, except Sunday is usually a quiet blog day and there were some groups that seemed to be thin on the ground this year – fewer techies and parent-bloggers than previous years. However, I think we may have had more readers than normal – almost 2,500 hits on Sunday and over a thousand on both Monday and Tuesday.

There was also some excellent writing, and I'm still trying to get round and leave all the comments I wanted to write on May 1st. In the meantime, thank you very much to everyone who left such kind comments on my own posts. Very much appreciated.

I should have said this earlier, but if anybody has any “Round-Up” posts of their favourite BADD posts, let me know and I shall post a link on the archive page. Lisa already did one at Where's the Benefit?

Naturally, I have since been sleeping a lot and I still am.

Blogging Against Disablism Day 2011

2011-05-01T00:03:00.020+01:00

Welcome to Blogging Against Disablism Day 2011!

Thanks very much to everyone who helped to spread the word and to everyone who posted about disability discrimination today. This year there was a very good turn out (especially considering it was a Sunday) and some truly excellent writing.

If you happen to write a "round-up" of your favourite BADD posts, give me a link and I shall include it here. So far I know Lisa has done one at Where's the Benefit?

Blogging Against Disablism 2011

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

Cheaper than Therapy: The Road to Hell...
Everyone Else Has a Blog: A Definition of Irony
Stickman Communications: The Good, the Bad and the Ugly
This Ain't Livin': Disability and Work

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

32 Days Remaining: In Memoriam: On the closure of SKILL, the UKs National Bureau for Students with Disabilities
Believe in Who You Are: Unsent Thank yous, getting it right
Education on the Plate: Opening Minds for More than One Day
HelenBowesCatton: Structure, agency, discrimination and privilege
Radical Neurodivergence Speaking: The fights we fight
SpEdChange: Whose Identity is it?
Urbania to Stoneheads: Researching disability in Ancient Greece

Technology and Web Accessibility

Crippie's Corner: Internet Disability
Gilbert and Me: Raising Awareness about an Inaccessible Information Age
Ubuntu Accessibility Team Blog: The Invisible Exhibition at UDS
Ubuntu Linux Tips & Tricks: ASL (cross-posted at Maco)

Other Access Issues
(Posts about any kind of access issue in the built environment, shops, services and various organisations. By "access issues" I mean anything which enables or disenables a person from doing what everyone else is able to do.)

Accessible Insights Blog: It’s On Aisle 5
Cripple Extraordinaire: On Being Able
Elf: Disability and Jury Duty
Footpath-Hogging Menace: A Few Days In My Seat
Memo to Self: Accessibility Fail
Moose J. Finklestein: Pittsburgh: The Most Liveable City - for the able-bodied or seniors
Normal Is Overrated: A Guide For Discouraging Self-Advocacy
Savette Gazette: My Daydream
To Gyre & Gambol: Desperately Seeking Parking
Trabasack: Choosing your battles
Working at Perfect: Steps

Definition and Analysis of Disablism/ Ableism

Crimsoncrip's Blog: Invalids no more, but are we still invalid?
Fatfu: (In)(di)visability
Me Despite M.E.: Blogging Against Disablism Day 2011
Ruth Madison: Spying on Disablism

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

Indigo Jo Blogs: No more Yuppie Flu!
Marian ilmestyskirja: Päivitä sanavarastosi / Update your vocabulary

Disablism Interacting with Other 'Isms'
(Posts about the way in which various discriminations interact; the way that the prejudice experienced as a disabled person may be compounded by race, gender, age, sexuality etc..)

Fat Heffalump: Fat and Disablism
The Files of Mason Dixon, Autistic: Case #3 Mortal Combat
Gilded Cage: Come talk to me
Incredible Hippy: Let us in! (Cross posted to The F Word)
Huimin Magdala Writes: More Deserving of Annihilation
Oi With the Poodles Already: The Body (In)Visable

Disablism in Literature, Culture and the Media

After Gadget: Please Don’t Send Me This Video
Cripz the Comic: A fitting celebration for 1 year on-line
Funky Mango's Musings: Gleeless
Geoff Holt MBE: Letter to the Press
Plato's Nightmare/ Aessop's Dream: The Lame Smith God and Two Sides of "Myth"
Urbania to Stoneheads: Demonisation of the disabled
Where's Lulu: Ten Disabled People with Regular TV Roles Right Now

History

Disability Studies, Temple U.: Disability History

Relationships, Love and Sex

L'Azile: A few thoughts about sex and disability
Diary of a Goldfish: The political and the deeply personal
Lisybabe: Somebody tell me why I'm on my own, if there's a soulmate for everyone...
This is my blog: It is possible

Non-English Language Blogs

Other

Embracing Chaos: A Glimpse of Success

Poetry against Disablism

Same Difference: Hello, I'm A Wheelchair

General Thoughts on Disablism

Anglers Rest: Blogging Against Disablism Day
Artyeggs: Crafting Against Disablism
Believe In Who You Are: Selecting my spoons
Composite: How I bought a bike
The CRPS Girl: What You Say
Dismantling Disabilities: Blogging Against Disablism Day
Dreamwidth: You're doing it wrong
Exploring the World Through the Web: Invisible Illness - Just because you can't see it, doesn't mean it's not there.
Fausterella: Being Vincible
Genderqueer in Your Closet: Appearances & Functioning
Just Stimming…: This is why
The Language of Respect: Impairment and Disablism: A World of Difference
Life Decanted: Somewhere...
Mimi Cummins: There's no shame in identifying yourself with the disabled community
Monastic Musings Too: Empathy: the antidote to -ism
Nightengale of Samarkand: Independence
Riparians at the Gate: The vast middle
Some Assembly Required: This divisive world we live in
Sunny Dreamer: This and that
TAL9000: Belated BADD post
Thoughts from the bear's den: Why does disablism exist?
Touched with Fire: Taking Up the Flaming Sword
The Trick Is To Keep Reading: A wee rant
UCP of the Golden Gate: Apathy could be the root of most disablism
Warped Woman's Wonderings: Blogging Against Disablism Day
Wheelchair Dancer: Closing Fissures
Wheelie Catholic: Being Youer Than You

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

All our lives: Adoption, Special Needs & Choice
I won't wear gray: Blogging Against Disablism Day

Healthcare Issues
(For example, the provision of healthcare, institutionalistaion of disabled people, reproductive ethics and euthanasia)

Accessibility NZ: The Ultimate Disability Discrimination
All our lives: Reproductive Violence and Injustice Against Disabled People
RoseRodent: Blogging Against Disablism Day

Impairment-Specific Prejudice

The Alternate Lexicon: So this is it
Chronically Crafted: Mobility Scooters and the Posts I didn't Write
Diary of a Benefit Scrounger: Blogging Against Disablism Day
enlighten.me.uk: Reopening Old Wounds
Life and Times of a Teenager With Disabilities: My name is AZ not az
Liguanaut.co.uk: White Stick Pride
Multi-faceted Abnormal /blog: Fighting the stigma of Mental Illness
A Multitude of Musings: “You Are Fake.”: DID and Ableism from Within
Paws for Thought: Independent living
A Quaker Witch: Why I'm tired
Transabled: Discrimination, Transsexual and BIID

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

A Little Something For Me: 15.32
Butterfly Dreams: My little ableist friend
Care in the UK: “I’m not disabled – I’m just not able to walk”
E. is for Epilepsy: The Bell
Life in a So-called Strap of Steel: Enjoying Life's Ride and Disabilities
Midlife And Treachery: Resurrection Day/ A Room of One’s Own
Painting: The Unexpected Positive Sides of Injury & Disability Discrimination
People Aren't Broken: Disability from the Inside Out: Forget Kindness, Try Fairness
People with Disabilities: Learners blog against Disablism
Perpetually Myself: Figuring out a not-quite-normal childhood
Strangely Blogged: Disablism - it's really about any of us, isn't it?
Views from the Reading Room: Blogging Against Disablism Day
Witticisms: Be aware of My Best Buddy
A Writer in a Wheelchair: The Fight Never Ends

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

Benefit Scrounging Scum: "The Ministry of Magic has fallen. He is coming. HE is coming"
A Blog about a Bloke-living with WHS: Exclusion and Government Funding
branchingouttrees: Mental Health and Care in the Community
The Crimson Crip: Disablism is no longer random its systemic
DWgism: What’s Wrong With Our Society?
Fighting Monsters: Disability, Language and Respect
The Meanderings of a Politically Incorrect Crip: "They're coming to get you, Barbara!"
Psychosis & Soyabeans: Little Brown Envelopes
Single Lens Reflections: Oh Boris, Where Art Thou?
Where's the benefit?: Integrity, Honesty, Objectivity, Impartiality
Where's the benefit?: People like me
Where's the benefit?: Vulnerability

Blogging Against Disablism Day: People Like Me

2011-05-01T00:01:00.001+01:00

Cross-posted at Where's the Benefit?

Please click the "CC" button at the bottom right of the frame for subtitles / captions.

This is my vlog for Blogging Against Disablism Day 2011. It's not terribly articulate but I was rather tired and nervous.

Filmed and edited by Stephen.

Blogging Against Disablism Day: The political and the deeply personal

2011-05-01T00:00:00.002+01:00

One Blogging Against Disablism Day, I was struggling to update the archive page. When overwhelmed, cognitive dysfunction can deny me access to very basic bits of information – I have forgotten my own name before, let alone my address or telephone number. At this point, I was having trouble listing the contributions in alphabetical order – something lots of people might struggle with when tired. In particular, I couldn't for the life of me work out whether M came before N or vice versa. So I asked my then husband which came first.

A brief exchanged followed. It was impossible that I couldn't remember which came first - I wasn't that stupid. I said that honestly, I couldn't remember, and reached for the dictionary, which I should have done first. Asking might have been quicker, but I had obviously picked a bad moment. My husband got up and punched the back of my laptop screen, cracking the case. For a moment I thought the screen was going to die and I would lose my computer in the middle of BADD. That's why I know what the date was.

The damage was kind of unlikely – I guess he meant to punch the laptop shut, but instead it cracked. My ex-husband did not value my things very highly, except when he wanted to criticise. He referred to my things as shit. As in, “There's some of your shit on the kitchen table.” or “Make sure you tidy your shit away before someone comes round.” After I left, I found I was in the habit of referring to my things as my shit, even though I had always objected to it.

The political is sometimes deeply personal.

Disabled people don't get abused because we inspire abusive behaviour in others. It's not even a matter of physical vulnerability and social isolation – although these can play a role. Marginalised people of all variety get abused because we are marginalised, and with marginalisation comes vulnerability, even attractiveness to those people who feel more comfortable with power and control rather than love and respect.

In the last year, I have been asking myself a lot of questions about how and why I remained in a relationship where I was shouted at, mocked, undermined and physically assaulted on a regular basis. There are a lot of answers that I'm still sorting through, about my vulnerability, about the mechanisms of abuse and also about my capacity to see the good in people, my capacity for love, loyalty, hope and so on. But disablity is a big part of what made me vulnerable.

Statistically, being disabled made me three times more likely to be abused than other women – which means that pretty much half of us will experience violence at some time. Disabled men are twice as likely to be abused as non-disabled men and are likely to have even more trouble identifying their abuse and getting appropriate help. I feel it is a near-certainty that somebody reading this is in an abusive relationship right now, which is a big part of why I am writing this.

Initially, it was very difficult to see my personal experience as anything other than the effect of a particular dynamic between my ex and I. After all, I was well aware of the relationship between disability and abuse (physical, verbal, sexual and financial) and thought it had nothing to do with me. My ex was not a monster – I was never more than bruised - and I was an outspoken feminist disability-activist type who wouldn't put up with anything too awful. But now I see that my cultural experience of disability left me particularly vulnerable to accepting all kinds of perverse normalities in my every day life.

For example, I honestly thought it was normal that what I could and couldn't do should be constantly questioned and cast into doubt. It seemed normal that I should have to defend myself against the ever-present suspicion that I must be either milking it, exaggerating my pain and fatigue or not simply pushing as hard as I might. There was a regular, baffling accusation that I acted more sick when I was at home with my ex than on days when I was out with family and friends. Of course, I only ever went out on good days and then with all that extra stimulation, the adrenalin kicked in to make them very good days before I returned home to crash for a week or so. My family and friends never saw me on mediocre days, let alone bad days.

As disabled people in education or at work, claiming benefits or special equipment, attempting to access goods and services, even in healthcare, we are treated as if any accommodation is a privilege, as if none of our experiences are legitimate until we have convinced other people. Our culture struggles with the inconsistency of chronic illness, the idea that variable limitations are real limitations and it allows this to be other people's business. We should be far more outraged by the social sport of judging other people who don't seem very ill, who have a disabled parking badge but who have been seen walking, people who's illnesses have dragged on so long that maybe they aren't trying hard enough.

Speculating about the honesty with which another person reports their health is as intrusive as speculation about the honesty with which someone expresses their feelings for loved ones. I don't even believe that this doubt was genuine – it was even less consistent than the ups and downs in my health – but this was a weapon our culture made available.

It honestly seemed normal that providing someone with help that they needed because of an impairment should be considered special, burdensome and deserving of infinite gratitude. Making a meal for yourself and your partner because someone has to do it is no work at all, but making a meal for yourself and your partner because she can't physically do it is an encumbrance – especially when a disabled woman depends on her male partner. Other men, I was told, wouldn't put up with it. I was lectured on how difficult it was to transport and push my wheelchair, how difficult it was to include me in any trip out. I was repeatedly warned not to make myself a problem for other people, as if anyone who did me any kind of favour was performing a great act of self-sacrifice. Sometimes I received these warnings in front of other people, creating the impression that I was ungrateful and demanding and making it impossible to protest without sounding even worse.

In reality, I may have provided more practical help to my ex than he did for me (we ate very badly and my washing-up and laundry was well below his standards) but because of the few things I absolutely couldn't do without help, I was constantly reminded of my burdensome nature, my incompetence and my dependence on him. And every piece of help I received was first held to ransom. If I was going out somewhere, if someone was coming round, often even when he was cooking dinner, I would be warned to tread carefully or the trip, the visit, even the meal would be withdrawn.

We give “care” special status in our culture, when very few of these tasks are special. I have needed very little intimate care, but I need help with food preparation and housework and I need help getting out and about. When I live with other people, I believe I can make a contribution to a household roughly equal to the help I need, and this is the sort of thing that family members and friends do for one another all the time anyway. The only special thing about the help I need is that I couldn't manage by myself and if I lived alone I would have to pay for help. But then some non-disabled people who live alone and work very long hours pay for help because they don't have time for the kinds of tasks which I don't have the energy for.

I honestly thought it was normal that my competence should be repeatedly called into question. My cognitive dysfunction and poor co-ordination was met with anger, sometimes mockery. If I struggled for words, I was incoherent, inarticulate and it was a joke that I should consider myself a writer. If I was slow to answer, I was living in a “cloud cuckoo land”. If I fainted or collapsed, if I split things or dropped things, then I was stupid and careless. When I argued that it was a symptom of illness, I was told that I obviously wasn't safe doing anything on my own and thus threatened with a further loss of independence.

Disabled people, especially those with mental ill health, cognitive dysfunction and intellectual impairments, are regularly treated as if we are not capable. Having an impairment in one area – or even having experienced a temporary lapse – is seen to signify pathological incompetence. This leads people to be afraid of admitting diagnoses and asking for help. It is also a self-fulfilling prophecy; there is nothing so sure to damage a person's ability to perform any given task than repeatedly telling them they are rubbish at it. Since I left, my ability to manage my poor co-ordination has improved a great deal because I'm no longer in constant danger of being shouted at if I slip up.

People with long-term conditions usually acquire a high level of self-awareness, which often includes an awareness of circumstances in which we lack self-awareness. I have a very good idea about what I can and can't trust myself to do, and although I still undoubtedly make mistakes, everyone does. I think I behave far more sensibly than many non-disabled people do when they experience excessive tiredness – let alone when they are drunk.

It honestly seemed normal that my physical appearance and weight should be a cause of constant criticism and mockery. My body was sometimes disappointing, sometimes disgusting but most often simply hilarious. Every day I would hear jokes about how fat I was, accompanied by sincere concerned remarks that my physical difficulties were not down to my ill health but to my weight. This is about how heavy I was at my absolute heaviest. Most criticisms were about things which I had especially little control over because of my condition such as my weight, my unhealthy-looking pallor, the general lack of firmness and muscle definition in a body with serious problems exercising.

Disabled people receive the same nonsense messages about physical appearance, sexual attraction and personal value as the rest of us, except that we are frequently excluded by default; images of disabled people are extraordinarily rare in our culture (except the obligatory wheelchair-user on politically-correct information leaflets). There are even fewer circumstances where people with physical impairments are portrayed as sexually attractive. In fiction – especially English detective fiction, incidentally, I don't know why – disabled wives are a standard explanation for a frustrated and adulterous husband. In a culture where romantic love is sometimes spoken about as a transaction between people of varying looks, status, brains etc., disability is considered a major disadvantage.

In real life, disabled people are often attractive, some of us are beautiful and it is especially perverse that anyone should be criticised on their looks by their own lover. I also think I made a mistake in feeling it shouldn't matter, that to believe in equality meant thinking that it didn't matter if I was made to feel ugly. It did. None of us should ever feel ashamed to be seen.

The society in which I live does not condone what happened to me. However, disability contributed to my vulnerability because of how society treats disabled people. The experience of disability rocked my self-worth to the extent that it took a long time to see that I did not deserve to be shouted at, laughed at or assaulted at all, let alone in my own home.

The good news is that I got away and now I have recovered enough to be able to open up about some of this. The bad news is that many disabled women and men remain vulnerable to these kinds of relationships. Not just with partners, but with anybody in any position of power over us. Disabled people in the UK are increasingly vulnerable to abuse as their financial independence and the independence brought by care provision slips away. Meanwhile toned-down versions of the messages that abusers use about our integrity, our burdensome nature, our competence and our unattractiveness remain all over our mainstream media.

This post has taken a tremendous amount of courage to publish. I have combed through the archives to make sure that my ex is utterly anonymous, but my anonymity here is paper thin. I considered posting elsewhere or pretending this was a guest post, but I think it is important to say this here, as myself, because I have the strength to do so.

I am Woman, Hear me Rawr!

2011-04-28T13:10:00.007+01:00

Kate Middleton's dress is only the second most important fashion revelation this week - and probably won't be quite so funky. Ladies and gentleman, I present to you, the gigantic pink dinosaur look - or the dinosaur rose colossal as they're calling it on the catwalks of Paris.

A month or so ago, Elizabeth made this dino hoody for her young lad and as I increasingly take my style cues from four year old boys, I knew I had to have one.

On eBay, I found a dip-dyed pink hoody and a very loud but very small pink tartan skirt from which I harvested the fabric for the spikes. I cut triangles with one side rounded to make cones. The tartan is polyester and whilst not especially thick, is rigid enough to stick out without stuffing, so it's perfectly comfortable to sit and lie down in - an advantage considering that that's what I do.

One of the cones I flattened and attached to pink ribbon for a tail, but that wasn't hanging at its best angle for the photo.

I began to write a little treatise here on the colour pink, which I see as a very politically-loaded colour, but to be honest I didn't think about anything political when buying the materials. I guess my thoughts were, this is going to look extraordinary silly anyway - pink may well take it to another level. Anyway, I've written about pink before.

Did I mention I was thirty? I love being thirty.

You can see more examples of dinosaur hoodies here.

If you haven't already, please sign up to Blogging Against Disablism Day and help spread the word. Everything seems to be going really well so far.

[Image descriptions: Three pictures of me, a tallish white woman with brown hair, modeling a pink hooded sweatshirt with dinosaur-style tartan spikes sticking out in a link up my spine and over the centre of the hood.]

Blogging Against Disablism Day will be May 1st, 2011

2011-04-18T09:30:00.003+01:00

Blogging Against Disablism Day is now Under Way! Please click here to see this year's contributions.

Blogging Against Disablism day will be on Sunday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination, disablism or ableism. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we've made.

This will be the fifth anniversary of our first Blogging Against Disablism Day in 2006 and this year promises to be a particularly good one. The disability blogosophere continues to grow from strength to strength and more people are motivated to speak out about disability issues than ever before.

How to take part.

1. Post a comment below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog. Everyone is welcome and everybody's experience matters.

2. Spread the word by linking back to this post, displaying our banner and/ or telling everyone about it. The entire success of Blogging Against Disablism Day depends entirely on bloggers telling other bloggers and readers in advance, on your blogs, on forums, wherever you can get the word out.

The abbreviated URL for this page is http://tinyurl.com/badd2011 and our twitter hashtag is #badd2011

3. Write a post on the subject of disability discrimination, disablism or ableism and publish it on Sunday May 1st - or as close as you are able. Podcasts, videocasts, art and photography are also welcome. You can cover any subject, specific or general, personal, social or political. In the previous five BADDs, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with other "isms", the history of disability discrimination and much more. You can browse through the archives for previous years here: 2006, 2007, 2008, 2009, 2010.

Every year I have been asked, so it's worth saying; the discrimination experienced by people with mental ill health is disablism, so naturally such posts are as welcome as the rest.

Blogging Against Disablism Day is not a carnival of previously published material. The point about doing this around one day is that it is a communal effort and all the posts connect to one another. You can of course use your own post to promote other things you've written as you wish.

4. Come back here to Diary of a Goldfish on May 1st to let everyone know that you've posted and to check out what other people have written. I shall post links to everyone's posts (slowly) throughout the day, creating an archive. However, I will need you to comment and leave the URL of your post or else I shan't find your post and won't be able to link to it.

Accessibility

Naturally, Blogging Against Disablism Day invites contributions from people with all variety of impairments and none at all. You are welcome to contribute with podcasts, video-blogging, photography or anything else that allows you to take part. And whilst May 1st is when this all takes place, nobody who happens to have a bad day that Saturday is going to be left out of the archive.

If anyone has any questions about web accessibility,Ｉrecommend the Accessify Forum. I am not an expert on web accessibility myself, so if there are any suggestions about how I can make this day more accessible, please e-mail me at diaryofagoldfish at googlemail.com

The Linguistic Amnesty

Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, please respect the language that people use, particularly to describe themselves in their own contributions. We all have personal preferences, there are cultural variations and different political positions which affect the language we use. Sometimes people use language to describe themselves which you may find offensive or upsetting. Meanwhile, non-disabled contributors can become nervous about using the most appropriate language to use, so please cut everyone as much slack as possible on the day.

At the same time, do not feel you have to use the same language that I do, even to talk about "disablism". If you prefer to blog against disability discrimination, ableism or blog for disability equality, then feel free to do so.

In 2008 I wrote a very basic guide to the Language of Disability which I hope might explain some of the thinking behind the different language disabled people prefer to use about themselves.

Links & Banners

To link back to this post, simply copy and paste the following code:

These banners have seemed popular over the last couple of years and I am yet to think of anything better. If anyone fancies editing these images or coming up with something new, then please do so. You are free to use and mess with these as you like, so long as you use them in support of Blogging Against Disablism Day. If you already have the banner, you just need to change the URL that it links to from last year's BADD. Otherwise, you simply need to copy the contents of one of these boxes and paste it on your blog, in a post or on the sidebar as you like. The banners come in two colour combinations and two sizes. The sizes are a 206 pixels square or 150 x 200 pixels.

This is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:

And here's the code for the narrower one (which can be seen here):

This is the colourful banner which reads "Blogging Against Disablism". This is the code for the square one:

And here's the code for the narrower one (which can be seen here):

Please leave a (comment including the URL of your blog) to let everyone know you are joining in and I shall add a link to you on the sidebar.

If you have any questions, please ask here or e-mail at diaryofagoldfish at googlemail.com

Losing Ambiguity

2011-04-14T21:33:00.005+01:00

Recently, I began watching modern adaptations of two of my absolute favouritist books in the whole wide world ever; the new BBC adaptation D. H. Lawrence's Women in Love (which turned out to be a heretical mash-up of the book of that title and The Rainbow) and the 2008 film of Evelyn Waugh's Brideshead Revisited. Truthfully, I didn't finish watching either and yes, that means I'm not allowed to review them. They might be okay - sometimes film-makers do magic with a book by ripping it to pieces and sewing it back together again (e.g.,Trainspotting where the film is ten miles better than the book). I'm afraid these two books were a little too precious to allow me to persist.

Both adaptations, as far as I saw them, wound me up in various ways but there was one thing they had in common. Both books have a major bisexual male character (Rupert Birkin and Charles Ryder) and in both adaptations, their sexuality was changed. Birkin becomes a homosexual who dabbles with women, and Ryder becomes a heterosexual who dabbles with (horribly caricatured camp) men. It is as if, in the early twenty-first century, we are less able to cope with sexual ambiguity than in the mid-twentieth when these books were published. Or indeed the late twentieth when we saw Alan Bates and Oliver Reed wrestling naked and a young Jeremy Irons gaze longingly and lovingly at the beautiful Anthony Andrews.

Our culture seems to struggle with sexual ambiguity and fluidity, outside the context of an attractive young women who might be prepared to swing both ways for our titillation – but that's sexual performance rather than sexuality. Apart from Captain Jack, bisexual men are almost totally absent from film and television drama. Everyone must be gay or straight and easily identified as such. Even if a character has sexual or romantic relationships with members of more than one gender, they must always turn out to be one way or the other.

I guess there are a few things going on here. One is our cultural obsession with labelling. Trouble is, there are contexts in which labels are essential, to help us talk about our experiences and most especially in the context of addressing social injustice. But people try to make our labels more than they are.

For example, take being gay man - there are, after all, far more gay men in films and drama than any other queer people.

In real life, being a gay man does not equal

being partnered to a man
finding most men sexually attractive
having sex with lots of men or indeed
having ever had sex with any man
having never had sex with women or indeed
never being sexually attracted to women

and that's before we get onto being flamboyant and sensitive, having an interest in fashion, musical theatre and the rest of the stereotype. Being a gay man only means that the people one is sexually and romantically attracted to are overwhelmingly men. Roughly. But even then, I'm thinking, it's not that simple. Even so, sexuality does not equal sexual behaviour, let alone social behaviour – in fact, historically, many people have lived their entire lives without expressing their sexuality at all.

Neither Lawrence nor Waugh used the word bisexual, but the characters of Rupert Birkin and Charles Ryder both had deep romantic and sexual feelings towards both men and women. Ryder has a romantic affair with a man and later has a romantic affair with a woman, who he wants to marry. Birkin is somewhat in love with his best male friend and gets a tremendous kick of physical contact with him (as his friend does) as well as other men. But he is also properly in love with a woman, even if he is a bit sexist and will insist in over-thinking it all (Birkin, the merkin, over-thinks everything).

I wonder sometimes if there is even more scepticism about bisexuality or pansexuality now than in days of yore when homosexual behaviour was unacceptable. Many gay people experience hopeful disbelief from family members that perhaps they just haven't found the right man/ woman, but I think there is more general scepticism around non-binary sexualities – even among gay people. Of course, many male public figures have describes themselves as bisexual before later coming out as gay, which doesn't help. But there is also this utterly bizarre cultural presumption that men are so hot that androphilia is the default. Bisexual women are generally presumed to be particularly adventurous straight women and bisexual men are presumed to be closeted gay men.

It seems that we have become especially wedded to the idea that there are two paths of masculinity and no cross-over; there are men who love women and there are men who love men, who are completely different in every conceivable way. In films and television drama, they play very different roles, they frequently walk and talk differently for ease of identification, they have very different motivations and interests. Bisexual men would mess up this binary – what's the chap going to do? Is he going to blow up the building or merely replace the curtains? Is he going to to fall for the helpless blonde or the geeky male sidekick? A dramatic world in which there are no gay heroes (unless they are very very tragic or very very comic) limits what everyone is allowed to be and eliminates bisexual characters altogether.

And this wasn't always the case. Big Hollywood movies force some degree of simplification and come from a different country anyway - here, gay characters from books, even history books, are frequently straightened out. But I honestly wonder whether our culture has stopped exploring gender and sexuality. British cinema of the sixties and seventies, and much of British television drama through into the mid-nineties featured all kinds of different masculinities – often, in fairness, neglecting any variation in femininity. But it's not like women's representation in films and drama has improved in leaps and bounds during this period of masculine stagnancy – our screens are still abound with worlds in which the only women who matter are young, white, pretty with the same motivations as the young, white and pretty women of the 1950s (except they had natural curves).

When making adaptations of sixty-three and ninety-one year old books means simplifying and sanitising sexual matters, then I think that we're not nearly so sexually progressive as we imagine we are.

-----

Being published in 1920, Women in Love is out of copyright and is on Gutenberg and Librivox. Brideshead Revisited was published in 1945 so we have a few more years, but it is absolutely delicious and well worth paying for.

Throughout this post, I've used bisexual when that's not exactly what I mean. See Generbitch's excellent post on Bisexuality, Binarism and Why Everyone Has It Wrong. Unfortunately, I wasn't sure how to phrase this more accurately without using a lot more words and possibly a glossary. But this is the trouble we have; labels which liberate in one context, are frequently inadequate to describe the subtleties of human experience. And when we lose these subtleties, we leave some people and their experiences out.

On Naivety and Renewed Hope

2011-03-26T13:39:00.001Z

Cross-posted at Where's the Benefit?

Three years ago I wrote a terrifically naïve post for the BBC Ouch! Blog entitled Who's afraid of Wellfare Reform? At the time I believed that there was some real fear-mongering going on, brought about by conjecture on the part of a desperate unpopular government heading into a financial crash. I thought that it was all rhetoric – categorising unemployable people as employable makes for bad statistics. A financial crash was coming and in the next few years, the last thing any government would want to do was risk an artificial rise in unemployment.

I have to counteract the humility with which I admit to such a mistake with the only explanation I have; I am smarter than the government. It's not exactly a boast. Even if I shared the current administration's contempt for people without alarm clocks, the assault on disability benefits is becoming a political disaster. If things are allowed to carry on as they are going, hundreds of thousands of unemployable people will be added to the already record unemployment. Further hundreds of thousands, who they government is spending money on trying to support into work, will never get into work because either they are totally unfit for work or there is no work flexible enough to employ them. And then there is the shift in the media and public feeling, as the human cost increases.

There are three dominant narratives in our culture about disability; triumph, tragedy and villainry. Disabled villains are self-pitying wretches who frequently exaggerate or even fabricate their impairments in order to manipulate others. Thus the media's love of disability benefit fraud - the more audacious, the better. And thus the Daily Mails's recent glee in spinning disablity benefits statistics to make unremarkable facts, like some people have been disabled for more than ten years, sound scandalous.

But that can't last. Until recently, everyone had an anecdote about their friend's uncle's neighbour who claimed Incapacity Benefit for an ingrowing toenail, had one of those mythical free cars and spent half the year skiing on the Costa Brava. Increasingly, everyone has an anecdote about someone they know who has a serious chronic illness, but who has been denied disability benefits, is being subjected to months of stress as they appeal, isn't able to leave the house any more because they can't afford the energy and expense, isn't getting the practical care they need to keep clean and eat properly and so on.

Some people are in deadly danger. Only being a notch or two smarter than the government, three years ago I wrote “All we can be subjected to is yet more hassle and insecurity - not good, but not disasterous.” It was very clumsy to suggest that any increase in the hassle and insecurity we have always experienced wouldn't be disasterous for some of us, but I can't berate myself for failing to imagine that things could be handled this badly. There has always hassle and insecurity - this autumn I was dealing with DLA renewal forms and divorce papers at the same time, and I really couldn't say which was the greatest source of stress. But it is as if the holes in the safety net are widening and falling straight through is becoming a serious prospect for people who don't have the resources or the energy to reach out and cling on. Our most vulnerable have become so much more vulnerable.

It was a matter of time before the tragedies associated with the disability benefit cuts became the story. This has already begun, chiefly in the Guardian and the Mirror. And this government have done as much as they could to turn the public against disabled people – hate crime which includes a reference to DLA simply cannot be unconnected to government rhetoric on disability benefits. But they have forgotten that disabled people are the public. Disabled people are the public's friends, neighbours and family members. Disabled people are what non-disabled people frequently become with age. Disability benefits and the public services we rely upon are part of the deal that everyone has been paying tax for, so that if they or those they love have the need, the support will be there.

Thanks and good wishes to everyone marching today from those of us whose impairments prevent us from doing so. If you're at home today, you can still participate in the DPAC virtual protest and follow the @wheresbenefit gang on Twitter.

My young man is a feminist

2011-03-25T09:49:00.001Z

Of course, Stephen was always a feminist. Feminism is simply the acknowledgement that there is social, cultural and political inequality between the genders and although that can hurt everybody, this is especially disadvantageous to women. Stephen already knew all that, but he didn't imagine that he could be called a feminist - even after I pointed out that he shares a birthday with that great he-feminist and father of liberalism, John Stuart Mill.

I have always called myself a feminist and it was very late in the day that I realised that many people who share this world-view nevertheless find the word problematic. And they give similar objections to those that Stephen raised:

Feminists believe that men and women have exactly equal attributes and abilities.

Stephen thought this because he had encountered self-proclaimed feminists who really did believe that.

Feminism rejects gender essentialism – the idea that there are fundamental physical, intellectual and psychological differences between all men and all women. There are approximate physical markers when we talk about sex, but all these differences are about typicalities – typical combinations of X and Y chromosomes, typical shape and function of reproductive organs and so on. Sex is biological and messy enough, but gender is a social construct and much much messier. (See Sex and Gender: An Introduction, which gets daily hits from people looking for the "gender" of their goldfish.)

When it comes to non-reproductive attributes and abilities, again, there are some typical differences. For example, a typical man can run faster than a typical woman of his age and equivalent level of fitness, but a younger woman is likely able to outrun an older man and an athletic woman can outrun most men. This means that out of any group of people, your fastest runner is likely to be a man, but it wouldn't be remarkable if it turned out to be a woman.

There also appear to be some subtle differences between a typical man and a typical woman when it comes to intellectual and psychological attributes. However, it is impossible to say which of these, if any, are innate, because gender programming is all-pervading and starts at birth. It is very difficult to study gender without inadvertently encouraging participants to live-up to gender stereotypes within tests.

But popular science, especially sound-bite science in the news media, loves stories about how gender stereotypes are either being proved or dramatically disproved, frequently missing the point of the original research in order to exchange a knowing “Men, eh?” or “Women, eh?” with the reader. From the last 24 hours we have Modern Men Prefer Powerful Women, some research by a gaming company, Women as Likely as Men to Enjoy Casual Sex, some research which spoke only to men and women who did enjoy casual sex, and Losing Virginity Makes Women Feel Less Pretty, more thorough but depressing research which concluded that over the course of college, everyone's self image deteriorated.

This is not to say that there are no innate intellectual or psychological differences between the typical man and the typical woman. There may well be lots. But, they will be subtle, there will be a great deal of variation and it seems extremely unlikely that any difference will ever justify unequal treatment or opportunities.

Many feminists hate men.

This is a very difficult area, because (a) the idea that feminists hate men is the basis for all lazy refutations of feminist arguments (b) feminist arguments are frequently misconstrued because the most extreme position is the most attention-grabbing one and (c) some feminists probably do hate men. There are a lot of troubled people in the world and feminism is yet to exercise an effective vetting program.

The idea that feminists hate men is an (ironically) ad hominem argument which people get away with because to hate men is a ludicrous, irrational and immoral position. If you're disagreeing with man-haters, who wouldn't be on your side? But feminism is not a position on what men are like - in fact, in rejecting gender-essentialism, the sentiment that all men are bastards (or cheats or rapists or whatever else) is decidedly unfeminist.

Which brings me onto misconstruction. Marilyn French was the feminist who is often accredited as stating that “All men are rapists.” Only she didn't. A fictional character (complex and not wholly sympathetic) in a novel she wrote, The Women's Room, said, “All men are rapists and that's all they are. They rape us with their eyes, their laws and their codes.” So not only the words of a fictional character, but one talking about metaphorical rape. It was years after having read The Women's Room that I realised that this was the context in which that famous "feminist" sentiment was uttered. And yet all over the internet this and other sentiments are attributed to feminists, paraphrased and out of context.

I have, however, occasionally encountered female feminists who have such a profound mistrust of men that it is prejudice. This is a problem for feminism. However, in all my reading and listening, the worst any misandrist feminist wishes on a man is distance. This cannot be compared to the misogynists of this world who never want distance from women. They want to control and dominate women and often feel that violence is justified against those who deviate from their ideals. All hatred is bad, but some hatred is more dangerous than others.

Feminists are unconcerned with ways in which gender inequality effects boys and men.

My favourite feminist group blog, The Pursuit of Harpyness, helped me correct this misconception with three posts from the last few weeks:

(a) A blogger reports on a news article which makes titillation out of sexual exploitation of male prisoners by female prison guards in NY Post sez Prison Sex is Romance, Not Rape

(b) One blogger's husband is driven to desperation by unemployment and the cultural expectations of the masculine provider and protector in On Shaking It Off and Moving Forward

(c) A male blogger talks about his frustrated desire to be a father and the lack of sympathy he gets from those around him in Guy, Interrupted.

Anything which hurts women hurts men and vice versa. The whole point of feminism is that we are all human beings, all equally deserving of respect, freedom and protection, socially and politically. There are ways in which men and boys are disadvantaged by dominant ideas of masculinity and femininity. There are even some ways in which things are getting worse -like the problems of boys, especially black boys, in education. But feminism isn't doing that.

Gender equality or inequality are not travelling on a smooth trajectory, powered by feminism and always heading in the same direction. Overall, things are improving, here and throughout the world. But sometimes things get worse for women, sometimes things get worse for men and it all matters to feminists.

Whether feminists talk about the problems of men enough, I really can't say. But lots of people feel marginalised by that vague entity of mainstream feminism, the sort of you see in major blogs and newspaper columns, which tends to focus almost exclusively on the experiences of middle class, highly educated, heterosexual, white, young, non-disabled, cis-gendered women. But if something isn't being spoken about enough, the only solution is to start talking about it.

[Image description: A black and white image of a handsome young white man with dark hair and spectacles pulling a very silly face, as if suddenly alarmed at the realisation of his lifelong feminism.]

Being, Doing and Nothingness

2011-03-09T12:14:00.000Z

Recently, I've been feeling rather positive about my health. I'm not used to thinking about my health at all, except in terms of how much can I do today and when something changes. But recently, a little hope has crept in. My health is not improving dramatically, but I am now in a better position to really take care of myself than I have been for as long as I have been ill. As a result, I feel a very great deal healthier. Functional impairment has barely shifted, but my skin is clearer, my muscle-tone is wonderful by my standards and I haven't had so much as a cold in eighteen months. I am more robust than I can ever remember being.

It's an alarming thought that I have been sick for approaching fifteen years, and up until the last six months or so, I have always lived in a very physically and psychologically difficult environment. I have never really had a chance to look after myself properly.

One downright dangerous thought to follow this would be how well might I have been now if things had been different? But therein lies madness, or at least profound silliness – some of the the journey was no fun at all, but I wouldn't have wanted to change the destination. Much.

I hadn't noticed how much the way I experience illness has changed until the random but substantial dip that I'm climbing out of now. For many years, there was tremendous pressure, both internal and external, for me to be as functional as possible. To be able to do things. To be able to study or write or keep house or look after other people. This meant I was in the habit of pushing through things until I collapsed, sometimes literally. I took the existence of this pressure for granted - I thought it was an inevitable part of the reality of living with chronic illness. I took the constant questioning of what my limitations were to be an inevitable consequence of living with another person whilst having chronic illness. And then suddenly, the pressure lifted.

If I am under any pressure at all at the moment, it is to look after myself. Not so that I can get well enough to be able to do more, but simply so that I am okay. Because I keep moving about the country, there are up to five people at any one time, who are highly invested in my being as comfortable, calm and contented as possible and nothing more than that.

Even so, it is difficult to shake off the idea that to be more ill is to be in people's way, holding them up, making work for them and inviting the suspicion that I'm milking it and that my perception is not to be trusted. And this makes me a difficult patient. Pushing myself, expecting to be ignored and apologising for everything makes people worry and fuss. It is a revelation to me that, if I'm hurting a great deal and struggling to stay awake, the best thing I can do for other people is stay still and ask for the things I need.

A part of me thinks that I am being spoilt in my current situation, because I am being looked after, unconditionally. And I know it is a lucky position to be in. But the idea that there is anything wrong here only works if you believe that every individual must fend for themselves, practically and financially. And most people don't. Most people live and work in teams of some sort or other, disabled or not. I have my dips, but so do everybody.

Yes, a bit of a ramble. But so much is changing in my life at the moment, I feel inclined to put some of that down. But of course I am living mid-story and I'm still not terribly awake.

More nonsense about the Work-Shy

2011-02-15T15:17:00.003Z

I guess I'm letting myself get a bit wound up by things in the news in order to get back to writing regularly.

Another problematic BBC News article UK needs to adopt tough US stance on earning welfare - another opinionated assertion posing as a news headline. From the main site, this was linked to as simply Workshy Britons. The article itself neither explains why the UK needs to adopt a tougher stance, nor does it demonstrate that there are any work-shy Britons.

Lawrie Mead, a US academic, visits Liverpool and laments how unemployed people feel entitled to having enough money to stay warm and have something to eat. Some telling sentences are

“One initial surprise was that the city did not appear down-at-heel.”

and

“The parents and children I encountered in Anfield seemed to me upbeat and well-organised. The community did not manifest the deeper disarray that one often encounters in poor areas in America.”

Thing is, being unemployed in the UK is a very different thing to being unemployed in the US. People are impoverished, but most people are not made desperate. The UK welfare state has been historically based on the idea that everyone pays into an insurance scheme and when someone does fall on hard times and need to claim from it, they do not have to give up their self-respect. Benefits are relatively generous and things like the National Health Service means that people don't so easily fall through the cracks. The vast majority of people who claim benefits work most of their lives and claim only briefly before returning to work. Just now, there are a lot of hard-working people on benefits because jobs are being lost all the time. These people do not need to be made to earn benefits – they already did. They simply need to be supported until such a time that they can earn a living and recommence paying into the pot

Another reason why impoverished parts of the country aren't so bad as impoverished parts of the US is that we have a minimum wage. It is illegal to employ people for less than £5.93 an hour (for those over 21). So if people are to work for their benefits, they cannot be expected to work more than 11 hours a week. That's just over two hours a day for the highest rate of Job Seekers Allowance.

But the biggest practical problem for getting unemployed people to work for their benefits is that there is no work. If the state had work that needed doing, it would surely employ peopl? . Unless of course the plan is to save the state money by first cutting public sector jobs, then forcing all these newly unemployed folk to work for illegally low pay under the guise of giving the work-shy incentives to work... well, it's a plan, I guess. Mead continues

“More important is the fact that many people still believe in entitlement - this is the idea that you have a right to get benefits if you qualify under the income rules, and you should not have to work for them.”

But you do. As a British citizen, you do have this right. Just as you have a right to claim on your car insurance if you have a bump. Everyone is entitled to claim benefits when they are out of work.

Something that really bugs me about the recent rhetoric around benefits is that there are lots of different ways in which the welfare state can work. There are lots of ways in which things could be reformed, made fairer, where we could guard against fraud and abuse and so on. There are even some ways in which costs could be cut.

But the principles underlining the benefits system are fundamentally fair. It is not a charity pot. The people of this country are not divided into hard-working tax-payers and work-shy layabouts. And just now, when more and more tax-payers are needing to claim from the pot – our pot - this rhetoric is particularly insulting.

ADHD and DLA Fraud

2011-02-06T17:48:00.004Z

cross-posted at Where's the Benefit?

There's an article on the BBC News website is entitled Unscrupulous parents seek ADHD diagnosis for benefits

The evidence for this assertion is that two anonymous headteachers claim this to be the case.

"Susan" has asked to remain anonymous, because she knows what she says is controversial and does not want to stigmatise the parents of every child with a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD).

Not sure how anonymous sources make any difference to the stigmatising effect of the article. ADHD is already a massively stigmatised condition. Many people, including teachers, are sceptical as to whether the condition isn't simply a way for bad parents to excuse the bad behaviour of their children. I have heard it theorised that ADHD is a problem caused by middle class parents who aren't prepared to smack their children and demand a label when their children struggle at school, or that ADHD is a problem caused by working class parents who feed their children junk food and abandon them to the television. Bringing benefit fraud into this can only add to the stigma.

Psychiatric diagnoses with subjective criteria are always tricky and identifying abnormality in children's behaviour is particularly fraught, so there are bound to be misdiagnoses. But for children with these impairments, attempting to navigate the world and an inflexible education system, a diagnosis of ADHD can be a tremendous gateway, not to extra cash for their parents, but to proper treatment and the help they need to succeed. DLA can be used to buy time, peace, practical adjustments and special arrangments so that these children and their families can have as full and normal life as possible. Which in turn promotes normal development.

Their anonymous source continues

"Every child I have on medication, we are asked to fill part of the forms that they [parents] submit as benefit claimants, to verify they have ADHD, so it goes hand-in-hand."

As the article later points out, both NICE and the Royal College of Psychiatrist believe that Ritalin should only be prescribed to chlidren with severe behavioural problems. Therefore, it follows, those families whose children are actually prescribed Ritalin are likely to be in greastest need for help.

Only of course, there are only 328,000 people on DLA under the age of 16, including all those with mobility and special care needs, whereas there are many more children taking Ritalin (I can't find a figure that agrees, but somewhere past half a million). Ritalin prescription and DLA do not go hand in hand.

Then finally,

Abuse of the Disability Living Allowance by parents is one reason the Department for Work and Pensions (DWP) is discussing reform.

No, it's not. It has been said before, but it has to be said again and again, DLA fraud is reckoned to stand at 0.5%. There are only 328,000 people under 16 claiming DLA, including all those children with mobility and special care needs. Presuming that fraud is as common amongst parents and guardians claiming for their children than amongst adults claiming for themselves – which seems extremely unlikely given the much stricter criteria for under 16s – then that's about 1600 cases in the country. The DWP are not reforming anything for the sake of 1600 fraudulent parents.

This article rattled me because it is such weak reporting and by the BBC, from whom I'd expect better. Disability fraud and the urgent need for reform has become a bandwagon, where an argument is built up around the word of anonymous sources who have no expertise beyond their anecdotal experience. Because there must be fraud. There must be massive fraud or else the government wouldn't be able to justify the cuts and increased stress and scrutiny in store for everyone on disability benefits.

The website article relates to a radio piece on this matter at 9pm tonight (Sunday, 6 February) on BBC Radio 5 Live. No, me neither.

Muscular Liberalism and Stories About Islam

2011-02-05T14:56:00.009Z

"Frankly, we need a lot less of the passive tolerance of recent years and much more active, muscular liberalism." - David Cameron, speaking about Islamic extremism at the Munich Security Conference.

Liberalism is jolly hard work. It means arguing for a society in which, inevitably, sooner or later, you will hear something that upsets or offends you, or a false statement on a subject that matters. People will behave in ways that unsetttle you, and yet you have to keep fighting for their right to do so. When I hear a phrase like muscular liberalism from a serving politician, I would expect something like some adjustments to our recent terrorism laws which criminalise various non-violent behaviours and allow police tremendous powers to interfere in the lives of those who come under suspicion.

No such luck...

“We must ban preachers of hate from coming to our countries. We must also proscribe organisations that incite terrorism - against people at home and abroad. Governments must also be shrewder in dealing with those that, while not violent, are certainly, in some cases, part of the problem.”

Cameron spoke to the EU in Munich today about Islamic Extremism and the failure of multiculturalism, the day after the anti-Islamic English Defence League took to the streets of Luton. The timing was appalling, but the rhetoric was worse.

“So when a white person holds objectionable views - racism, for example - we rightly condemn them. But when equally unacceptable views or practices have come from someone who isn't white, we've been too cautious, frankly even fearful, to stand up to them.”

Common narratives around race, religion and immigration are extraordinarily dangerous. We like stories. We also like simplicity, irony, colour-coding, heroes and villains. So stories about the way things are that appeal tend to stick better than stories which are true.

Privileged groups have been using the “one rule for them, another rule for us” complaint forever. I daresay a Pharoah once complained, “When a Hebrew kills an Egyptian overseer, he gets a burning bush and a pat on the back. But when an upstanding Egyptian accidentally drops a few thousand babies in the Nile and enslaves their parents, God goes and sends ten bloody plagues! It's political correctness gone mad!”

And it is blatantly untrue. There may be some people who imagine that outrageous views held by a member of a minority are somehow okay, or even part of their culture and therefore worthy of respect. But a Muslim only needs to moan about Western culture as much as the average pub bore and there is mass media coverage. Anjem Choudary, who appears to represent nobody but himself, is rarely out of the news. Yesterday, two Muslims made the national news by silently abstaining from a standing ovation for a man who had won the George Cross (please don't make me link, it was in the Daily Star).

It's almost a shame that the story isn't true, because it would make some sort of sense. Like Jack Straw's comments about sexually frustrated single Asian young men preying on white girls because Asian girls are sexually unavailable. Would make some sort of sense if it wasn't for the fact that the Asian men recently prosecuted for abusing young women and children were married, in their late twenties and anyway, rape has little to do with sexually frustation. But these stories have great appeal, they make some kind of sense of something in equal parts complex and horrible. But they do so at the cost of a scapegoat, at the cost of these communities who are always being spoken about in the third person.

We cannot ignore crimes committed by anybody, and terrorism is a very serious crime. But I think that as white folk, we have a greater responsibility to confront white voices who preach hatred and falsehood (and thus, provoke hate in others) than we do to confront non-white haters. We're the majority, we have the privilege and these people frequently claim to speak for our interests. And it's a very watered-down, cowardly liberalism that resorts to banning individuals who only want to speak. Even if what they have to say is as vile as vile can be.

This is a bit of a ramble but I've been struggling and I went and pressed publish by accident again half way through - so folks on feed-readers already got a preview.

An Entirely Biased Who's Who of the Disability Blogosphere, January 2011

2011-01-27T14:15:00.003Z

@_louhicky who draws Crip Strips recently asked me about the movers and shakers within the disability movement on-line. The part of the disability movement I know most about is in the blogosphere, and when I began to think of important bloggers to tell Lou about, I thought it might make something of a celebratory post. As it turned out, I've had a few poorly weeks and during such times it is other bloggers who help me feel connected to things.

However, I am no particular authority on this, not all important disability blogger will have appeared on my radar and I'm bound to have forgotten some of those that have. I've also struggled to categorise these in any meaningful way. So it occurs to me, maybe other folk can blog their own lists of important disability bloggers. Hmm... I have vague amorphous thoughts about compiling a gigantic map of the disability blogosphere, but as I say, poorly weeks. Please at least comment with links to important bloggers I've forgotten. Right...

Penny at Disability Studies, Temple U., was one of the first bloggers on disability I encountered, a real community blogger who writes fascinating posts about disabled people in history and initiated the monthly Disability Blog Carnivals (the most recent having been at Butterfly Dreams).

I think the best academic disability bloggers are the great Ira Socol who wrote The Drool Room and blogs at SpeEdChange, frugal feminist Irational Point at Modus Dopens and Deven Black at Education on the Plate. Someone I regard as academic because she write seriously about autism research and psychology is Lindsay at Autist's Corner. Ballastexistenz and Bev at Square 8 are perhaps the most prominent bloggers writing about neurodiversity.

The most glamourous disability bloggers I know are Wheelchair Dancer (who is a professional dancer, funnily enough) and writer and TV presenter Mik Scarlet at Scarlet Sees Red. Two very important writers on disability are articulator-of-pain Elizabeth McClung at Screw Bronze and Dave Hingsburger at Rolling Around Life. Poet Cripchick has been a pivotal in the disability blogging community, but has been quiet since November. Hope she is okay.

Entrepreneur and bride-to-be Mary at This is my Blog writes honestly and engagingly about a huge range of personal-political issues. Wheelie Catholic writes about politics, post lots of links and videos as well as moving pieces about everyday greatness and injustice. Lawyer and sometime revolutionary Mark Siegel at the 19th Floor writes about disability in culture and US politics, as does Imfunnytoo at Midlife and Treachery and Stephen Kuusisto at Planet of the Blind. William Peace at Bad Cripple is another American writing especially about medical ethics, as well as recently charting his own ill health with considerable courage and candour.

Two of the UK's most prominent and prolific disability bloggers are nautical knitter Emma at Writer in a Wheelchair and death-walking diva BendyGirl at Benefit Scrounging Scum, who were the ring-leaders of the recent One Month Before Heartbreak. BendyGirl also started the Broken of Britain blog, collecting stories of disabled people affected by UK benefit reform. They both in turn write for Where's the Benefit? about UK disabilty benefits, as does writer and sweetheart of the twitterati Lisa at Lisy Babe's Blog and Incurable Hippie who blogs at Incurable Hippie's Musings and Rants as well as The F-Word on occasion. Other important British writers on disability include kinky Claire Lewis at Disabled People Fight Back, Sara at Same Difference and brevity being the soul of wit, Katie at Everyone Else Has a Blog.

I don't actually think of these as Mommy Bloggers, but these ladies are all joyful and articulate parents of disabled children; Starlife at Life Decanted , Stephanie at Embracing Chaos and Maddy at Whitterer on Autism. Casdok at Mother of Shrek has a 22 year old autistic lad.

The now defunct FWD/ Forward: Feminists with Disabilities blog will remain an important resource long after the cobwebs are formed. Former contributors include another academic Anna at Trouble is a State of Mind, US military veteran Ouyang Dan at Random Babble, Annaham at Ham Blog and Lauredhel at the big Austrailian feminist blog Hoyden about Town. There are lots of different feminist voices at Womanist Musings but Renee who runs the blog frequently writes about disability and how it intersects with race, gender and size. Bint Ashama at My Private Casbah is another important writer on disabiliy and race.

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This second section doesn't mean to imply inferiority, but these are different kinds of blogs which contain different kinds of content and may be more specialist that those above. This is a difficult excercise so please forgive my struggle to categorise.

Never That Easy and Diane at A Stellarlife are great writers about living with chronic illness.

Other academic bloggers who are worth reading about disability who I haven't mentioned above include Lilwatchergirl at Through Myself and Back Again, Naomi at Uncovering the Roof, Lili at Silly Legal, Miss Shuguah at Fumbling About in the Dark and Kethry at Urbania to Stoneheads who has recently returned to education.

Gary at AWTS, James at A Pretty Simple Blog and Makayla Lewis are the people to read about web accessibility.

Best disabled photographer I know of is my own amazing Stephen who blogs at Single Lens Reflections. Other disabled creative types include Rachel at Rachel Creative, Cusp at L'Ombre de mon Ombre, Katya Robin, Gaina at The Mouth on Wheels and embroiderer Elmsley Rose. See also the Disability Arts Online collection of blogs.

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There is, of course, plenty disability community activity outside blogging, on Twitter, Tumblr and on forums and social networks throughout the web. But I think these folks I've listed here are a good place to start.

Your Kicks For Free

2011-01-19T09:44:00.004Z

Censorship, within the arts, is almost always a very bad thing. Art not only makes our lives much more enjoyable; we use art as a mirror in whose reflection we can better understand ourselves, our lives and the world around us. I don't really need to defend art or variation within it. Where art is stifled by censorship, life itself is stifled.

And alas, art has to mean everything. Everything anybody calls art, music, drama, creative writing, even if to our own eyes it lacks all merit. This is not to say all art must be revered or indeed given any time or space at all, but it must be protected from interference. And freedom of expression is always a too way thing – we have both the freedom to express ourselves and the freedom to access those expressions.

A far more worthy post than this one would be about budget cuts to the arts in the UK, both in direct arts funding and in education, as well as the closure of libraries and all sorts of other heinous crimes against our culture being committed at this time. But I feel I am a blogger in rehabilitation and I need to pace myself. So let me start with Dire Straits.

When I first heard that Canadian radio stations will now only be allowed to play a censored version of Money for Nothing by Dire Straits, I thought it was a bit ridiculous. The song (unedited version here) is about a removals gang who envy and mock the easy and hedonistic life of rock musicians, referring to one of the musicians as a faggot. This context is self-evident from the lyrics. It's rock musicians mocking their own self-image; the irony is not at all subtle. And it is a classic song.

Sparky wrote about this and has been quite upset. Some folk who are against the censorship have used the opportunity to use the offending word repeatedly and mockingly. Others have attempted to defend the word as inoffensive and still others have used the events to attack gay men as tyrannous and over-sensitive - all those classic rants about political correctness. And reading Sparky's considerable discomfort at the debate (if it can be called a debate), I swung towards his position.

And this brings us to an often neglected but vital part of freedom of expression. Part of the freedom to express oneself is the freedom to be silent. Artists have the right not to make art, the media have the right not to publish or broadcast things. And part of the freedom to access art is, for lack of a better way of putting it, the freedom to remove oneself from the experience.

Nobody has a right not to be offended, but people do have a right to opt out, within reason, of listening to or looking at things which offend them. This is why what is allowed on a billboard is quite different to what is allowed between the covers of a magazine – most people who pass have no choice but to at least glimpse the billboard, whereas a magazine must be bought and a page can be easily and swiftly turned to hide offending words or images. All mediums have different responsibilities according to how active or passive a person has to be in order to access the art.

There are lots of situations where you can't opt out of listening to a radio. In various places of work, in stores and restaurants, in taxis, even in the streets in the summer when folk have the volume up and their windows open. So where a word is well-established as being both offensive and discriminatory, then maybe it is fair enough to keep it off the radio? It is extremely easy to access uncensored music, so nobody is really missing out.

But I'm not entirely happy with this. The biggest problem with this kind of censorship is inconsistency. Sparky wrote a bit about this too, and lists some bizarre examples of words which have been deemed unpalatable. It's a very small list of words which are totally offensiveness in any context *. One of the more difficult words for me to hear is bitch, which is often used in deeply unpleasant contexts, but I've never been upset by Elton John or Meredith Brooks singing it, where it is self-referential. Context does matter with many offensive words, if not all of them.

It isn't such a challenge to edit out individual words, but there are songs where the entire lyric is homophobic or misogynistic or otherwise hateful. This is both far more problematic and usually very difficult to define - at what point does a song about a heartbroken man cursing all womankind slip into actual misogyny? Homophobic songs, at least all the ones I can think of, tend to have such a profound lack of subtlety that they are swiftly identified and more or less removed from radio playlists. There are entire genres of music where misogynist lyrics come as standard.

I have to say that I would distinguish between these arguments, about offensive discriminatory words or content, and arguments about art encouraging certain behaviour - like Money for Nothing encouraging people to use the slur within it. I think the argument that some people can't understand the ironic usage and would think it gives them license to use such language is the top of a very slippery slope.

Art is often about emotional extremes, including hate and violent inclination. There have been lots of popular songs about romanticised murder coming through from folk music, sometimes sung from the perpetrator's point of view. Violence has always featured in gripping and moving narratives, without calling us to violence. That issue is not uncomplicated of course, but this issue of art corrupting our minds is more dangerous when it comes to our freedoms of expression.

Anyway, I don't have a particular conclusion here because I'm still pondering it all myself.

Incidentally, this matter is a million billion miles from the nonsense about taking the N word out of Huckleberry Finn, which has been written about very eloquently elsewhere (such as here). In summary, when a book is being used in education, context is everything, and removing the word dilutes a vitally important context

* My wee nephew was singing a somewhat illegible nursery rhyme and I tried to identify it using Spotify. On one album of nursery rhymes I spotted P*ssy's in the Well. Which did make me giggle. Proving that censorship itself can corrupt young minds – chiefly my own.

One Month Before Heartbreak: Judgement Day

2011-01-15T23:32:00.000Z

More or less cross-posted at Single Lens Reflections

I've had a very busy and exhausting week, but really wanted to participate in the One Month Before Heartbreak blogswarm, campaigning against UK disability benefit cuts and in particular, the proposed abolition of Disability Living Allowance. But I haven't been able to write anything. I was lamenting this to Stephen and we decided to have a IM chat about it and use that, however it came up. So it is a little cringe-worthy, but better than nothing.

-------

Goldfish: A few months ago, I mentioned to my new GP that my DLA was up for renewal. He warned me that if I got turned down, I shouldn't take it personally - he knew many people who were being refused now, despite having very severe impairments. I know not to take it personally, of course, and yet the current system, political rhetoric, media coverage and the tone of proposed reforms are such that anything we have to do with disability benefits feels very very personal.

Stephen: And indeed it is personal. As much as it'd be nice to live in a communists utopia, we need money to live and as such are reliant upon national insurance to pay out for our survival. But not only that, we, the disabled, are made to jump through hoops to determine whether or not we're capable of work. Which is especially galling when the hoop jumping can be as difficult or impossible as work.

Goldfish: "The disabled"? You're proposing to put this on my blog, honey.

Stephen: You know me - I call a spade a shovel. Dear reader, please forgive my horrendous grasp of correct terminology. I care about you all deeply, even though I'm insulting you at the same time.

Goldfish: Anyway.

Stephen: Anyway.

Goldfish: I think another thing which makes it so personal is the fact that politicians talk about the workshy and other variations on the undeserving poor, the media take that a step further and render most of us scroungers or cheats, but then people around us use the same language - worse language even than "the disabled". They talk about welfare cuts as a universally good thing because of the scroungers, because of the so-called disabled. And if they notice your discomfort, they insist that they don't mean people like you.

What they don't realise is that almost all claimants are people like you, and me. And we're not magically protected from the effect of cuts just because they happen to consider us worthy of protection.

Stephen: Okay okay not so subtle point taken. People who might not be quite so able but who are still dashingly handsome and/or ravishingly beautiful are, indeed, clumped together. I mean, the DLA form itself is only really relative just so long as you stick to a certain set of disabilities. If you're outside of those pre-defined multiple choice answers then you have to write a huge amount to try to explain why you don't fit in and yet why you still need this money.

Goldfish: And I imagine most people are outside those boxes; most disabled people aren't full-time wheelchair users, don't experience total blindness or deafness etc..

Stephen: Do you think that the forms mirror public perception? The good disabled person who's deserving of the money that they so generously donate from their children's piggy banks is the one who answers all those questions by ticking the top most box (and who, sadly, but also thankfully, might not live too long and so not be a long term financial drain)?

Goldfish: In fairness, I don't think the public feels very generous towards those who tick the top box of the mental health questions.

Stephen: True...as we saw recently in the aftermath of the Giffords shooting. The stance of Sheriff Dupnik was that the world was a safer place with the mentally ill locked up rather than integrated into the community. So our ideal disabled victim (because surely they are a victim - of a random virus, a terrible car accident [just so long as they didn't cause it] or, if possible, falling from a height whilst trying to save a poor little girl and her kitten from a tree house fire) is a full time wheelchair user, possibly also blind, very grateful and entirely sane. Is that even possible?

I'm not sure I'd be that sane after all that bad luck.

Goldfish: *rolls eyes

Stephen: What?

Goldfish: I will have to apologise to any heroic blind wheelchair-users who pass by my blog now.

In any case, we were talking about this issue of how difficult it is not to take this stuff personally. You've been trying to sort out your exam conditions for your final university exams.

(Do you like the subtlety there? - I should work on daytime TV.)

Stephen: Indeed. I'm studying for a BA in Classics via distance learning. Because of the setup, it's 100% exam graded. As you can imagine, that means that come exam time there's a considerable amount of pressure. Indeed, for the last few months I've been hell to live with, isn't that right, Darling?

Goldfish: Hades, sweetheart - I thought it was Hades?

Stephen: I've failed already. Anyway, because I'm a person who might not be quite so able but who is still dashingly handsome and/or ravishingly beautiful (or a PWmnbqsAbwisDH/RB to those in the know) I need some help when it comes to exam time. I get to take my exam locally, for example, rather than having to travel to London. And I am able to use a computer keyboard rather than handwrite. And in order to qualify for these I have to get a doctor's letter explaining that I'm a PWmnbqsAbwisDH/RB and so should be allowed these things. In my first year the system was so poorly set up that I wasn't aware as to whether I was going to get the special arrangements or not until two days before the exam.

So although I got the help I needed to make my chances as fair as the next wannabe classicist, I had a considerable amount of extra stress that none of the other candidates did.

Goldfish: (Incidentally, dear reader, he has not been at all difficult, only has occasional flashes of self doubt, such as "I've failed already." What this man doesn't know about the motivations of Ajax when he set upon his "wooly captives" is not worth knowing. )

(That's the lesser Ajax, by the way. Or is it the greater one?)

Stephen: (Greater)

Goldfish: (Okay)

Stephen: (You know when I said - could you take the exam for me..?)

Goldfish: Anyway

You were trying to make sure the exam conditions were sorted for this May, love. And like any large institution, the wheels were turning very slowly...

Stephen: Yes. I had been told that there would be no need to reapply, but things have changed and now I have to get a new doctor's letter. Of course, getting an appointment with the GP isn't that easy and I've got that booked for just over a week away. The expectation was that I should be able to get a letter posted off to them instantly, so straight away I wasn't conforming with the idea of what I should be doing.

Then there was the issue of a local exam centre. If you're one of the idealised disabled, the process of getting to London *shouldn't* be a problem. But for me it's impossible.

But the problem is...the people in the special needs department haven't specifically questioned these things. They just mentioned them (in, I think it's fair to say, a rather clumsy way. Even more clumsy than my terminology. Yeah, I know, I didn't think it was possible either). The problem is that I feel under pressure to conform to ideas of what I should be capable of doing. I feel that I am being judged. And, well, I *am* being judged. Someone has to look at my medical evidence and say whether what I'm asking is appropriate. But that's a horrible position to be in. Especially when I am actually paying for the privilege of taking the degree!

By the way, dear reader, Deborah's just popped to the loo. So we're alone now. We can talk about whatever we want! Have you seen the new Mercedes SLK? What do you think of the front end redesign? I'm afraid it's a bit too clunky to me. that sort of front heaviness works on the SLS, but then that's an entirely different vehicle...

Goldfish: Sweetheart, I think you are getting distracted.

Stephen: Er...yes, maybe.

Goldfish: When you got that e-mail from the Special Needs people, you said that you felt that they were suspicious of you?

Stephen: Yes. Well, just the act of asking again. When you're living with something, especially a disability, it leaves you very sensitive to any mention of it. Or it does me. Being told that they would collect the information so that they could make the 'right decision' upset me. What is the right decision? Is it right for me? For the university? For the world in general?

And what's right got to do with it?

If the world were right I'd not have to be dealing with extra process to get to a point of equality.

Goldfish: And I tried to reassure you that they probably weren't suspicious of you, just clumsy and uncreative in the way big institutions often are. But this is how we're made to feel. Like every need, however simple, has to be justified.

And this is the case in many areas. Lilwatchgirl is going through this with Access to Work, you've got this with your exam conditions, but I think it all comes down to the way that we talk about disability in society.

And so much of that is to do with politics, and so long as disabled people are a political scapegoat, so long as money-saving measures are so often focussed on us and how expensive we are, then people are going to think that it is the natural order of things that we have to justify our existence in that society.