Domestic Violence. Ha ha ha!

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

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

Around this time, I noticed the amount of domestic violence used for comic effect in movies. It generally goes like this

Male character is trying to get on with his adventure. This is either a comedy or an action film that doesn't take itself too seriously, so his adventure has some ludicrous elements (although it will all turn out well in the end). Female character – wife, girlfriend, occasionally mother – identifies his behaviour as ludicrous and becomes upset. They argue, he says all the wrong things and she ends up slapping him, hitting him with something, kicking him in the goolies etc.. He goes on his way and continues his adventure, intending to make it up to her – or win her back if she's told him to go to hell – when his mission is accomplished.

It's funny because the protagonist is a tough guy who is going to bring down some really bad guys and she's just a woman. A staple of comedy is when someone we perceive as vulnerable (e.g. a mouse, a little old lady, a small boy left home alone at Christmas) attacks and defeats someone we had hitherto perceived as invincible (e.g. a cat, a trained assassin, a pair of hardened burglars). This is why it is funny for our tough hero, loveable as he is, to be humiliated and assaulted by a woman. And it doesn't matter. Women's violence is so utterly inconsequential that it is actually funny.

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.

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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

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

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

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

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

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

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.